Every Breath I Take

Hello? Hello! Anybody out there?

2012-01-14T11:56:00.000-06:00

[peeping my head up out of the ground]

Wow. I just realized that my last post was on July 29, 2011. I honestly didn't realize I'd been gone that long. You know what they say about having good intentions - I've been meaning to put pen to paper (or hand to keyboard) for quite a while but I have let time escape me.

I think most of my family and friends have kept up with me on Facebook, but I needed to write a longer post to write the update I've promised to so many. I'm home from the hospital, but still not functioning at 100%. I was in the hospital for 28 days in December (the second longest stay I've ever had), for a visit that just didn't go as planned. Here's a quick overview of what's happened.

November 10th - Clinic visit. PFTs were down and probably worthy of IV meds, but I wanted to try and "plan" my next admission so that it fell between Thanksgiving and Christmas. My doctor and I made an agreement that I would be seen in two weeks and do a 14 day course of Avelox. He made me agree to an admission if my next FEV1 was less than 45%.

November 22nd - Clinic visit with my nurse practitioner. An odd day, because my PFTs were actually higher than expected, but I sounded like a freight train was rumbling through my chest. I "presented" as being sick, so my NP wanted to admit me. Once again, I begged and pleaded my way to holding the admission until after Thanksgiving. I was already scheduled to be off the remainder of the week (Wednesday, Turkey Day, and Black Friday), so I would be able to rest and finish out the 2nd course of antibiotics that my ENT had prescribed. "Patient reluctantly agreed to admission on Monday" (as my nurse stated in my progress notes).

November 28th - Showed up (suitcase in hand) and prepared myself for 21 fun-filled days of doctors and antibiotics. For all intents and purposes this was supposed to be a "routine" visit. Through many years of trial and error, I have found that 21 days of antibiotics gives me my best outcome - bringing any infection under control and giving me a boost to stay out of the hospital for the next ten or twelve weeks.

Let the fun begin...

At my first clinic visit in November I talked to my doctor about the hip and leg pain that I had been experiencing since September. As it had been getting progressively worse, he agreed to order a hip x-ray and MRI to see if we could find the cause of the problem. The results: two compressed discs in my lower back (in between L4 & L5 and L5 & S1) that are strategically positioned to sit right on the nerve root. This explained the sharp, stabbing pain I was feeling in my hip that radiated down my leg and the numbness/tingling sensation in my foot.

By the time the x-ray and MRI were ordered, my pain had worsened significantly - bringing me to tears, barely able to walk from my bed to the bathroom. While my normal "drug of choice" for pain is Tylenol or Advil, I was to the point of begging for something stronger.

[Cue massive drama and theatrics] . Consults had been made with Neurosurgery and Anesthesiology (the god-like creatures who deign to treat the pain in mere mortals held captive at UAB). To make a long story short, there was a difference in opinion in how I was to be treated. Of course, those differences tend to happen when the resident assigned to the case fails to read the MRI results before concluding that said patient is merely "drug-seeking" and states there is no evidence of why she would be in pain. Interesting theory, considering both the radiologist and neurosurgeon had identified two compressed discs in my lower back that are sitting directly on the nerve root. That explain exactly why I was in excruciating pain.

I was, of course, just the slightest bit pissed off that a resident I had never laid eyes upon was standing in my room accusing me of a drug problem. I kindly showed him the way out and proceeded to raise holy hell with my pulmonary doctor and NP. I am very fortunate to have an outstanding relationship with my NP, and although the attending Dr. that was seeing patients in December may not know me that well, he knew enough to be able to rely on my nurse's assessment of the situation.

In the end, my pain was managed by my pulmonary team. I was discharged with a stack of prescriptions and referrals to both the Pain Clinic and Neurosurgery. The plan-of-care recommended trying a steroid dose pack (which was done in the hospital, but with no benefit). Up next in the play book are an epidural block and/or surgery.

On the Pulmonary front, things went from bad to worse. My pulmonary functions declined throughout my hospital visit rather than improving as they normally would. Overall, I never felt that I was truly "getting well" - on Day 21, I felt as bad if not worse as when I was admitted. On Day 24 (the Friday before Christmas), my PFTs were extremely poor (FEV1 = 25%), which kind of sent me into a downward spiral. To be perfectly honest, I am normally one of those people that can just put on a happy face, even if I am upset or frustrated. After such a long and intense stay, though, I lost my cool.

I ended up completing 28 days of antibiotics and received a Solumedrol kick in the ass (high octane steroids) my last weekend there. Unfortunately I was in the hospital over Christmas, but was able to go home the day after. The hospital is never where you want to spend the holidays, but we made a go of it. I dressed up in my Christmas PJs (a gift from my mother) and my family came to visit. My aunt made her famous fried chicken nuggets, so I enjoyed a good meal that day (Thanks, Cheryl!).

I've been home for two (almost three) weeks now and recovery has been slow. When I was younger, I was always raring to go the day after I got home. The older I get, the longer that seems to take. I would say that, on average, it now takes me almost a full week (at least four or five days) to get myself back in the swing of things. The negative side of receiving the steroid boost at the very end of my hospital visit meant that I had to come home on Prednisone. And although my lungs appreciate the effects of the steroids, the rest of my body does not. My taper runs for two more weeks. This means two more weeks of insomnia offset by moments of pred-mania. I am also suffering from a severe case of pred-munchies and cravings of the weirdest sort (Arby's mozzarella cheese sticks and a vanilla milkshake, anybody?).

So, where are we now?

Well, if you've made it this far, then I applaud you! Because my PFTs were so low when I left the hospital, my doctors wanted to see me in clinic in two weeks rather than the usual four-week followup. I went to clinic on Monday. My PFTs were up some from my discharge (FEV1 = 34%), but not at all close to my "well" standards. Generally speaking, if I blew a 34%, I would be admitted, but since we had just finished 28 days of strong antibiotics, my Dr. and I agreed that adding another seven or fourteen days would not be helpful. So, fortunately, I was able to hold off on being re-admitted to the hospital.

Right now, our goal is to find out what is causing my PFTs to drop so suddenly and not bounce back like they usually do. My Dr. wanted to check for ABPA (Allergic Bronchopulmonary Aspergillosis), which is a fungus that can wreak havoc in CF lungs. Technically, I have not met the criteria for diagnosis (having a serum IgE greater than 1000), but previous studies have shown that I have had an elevated IgE for quite some time (in the 700-800 range). Because I have a history of ABPA (in high school), my Dr. wanted to order a special test (which is, of course, expensive) that is more sensitive and may be able to determine if ABPA is causing my current issues. If it is, then the plan is to treat with anti-fungals and steroids. Honestly, although I do want to find out what is wrong, I really don't want it to be ABPA because I'm not sure I can stand to be on steroids for much longer.

If the test for ABPA is negative, then my Dr. wants to do a bronch to take a peek at what is going on inside my lungs. Right now, this is currently scheduled for February 6th. I'll also have a clinic appointment the same day so that we can discuss the results of the bronch.

Finally, we discussed the possibility of a referral over to the transplant clinic. The appointment would be more of a "meet & greet" (although I know most of the doctors because they rotate in and out of our CF clinic). We would discuss the possibility of beginning the evaluation process. It does not necessarily mean that I would be listed right now (or any time in the near future), but if I get the tests done, they will be good for two years. Although I'm OK with the eventual possibility of a transplant, I'm not quite ready to jump the gun. However, once a Girl Scout, always a Girl Scout, so I will at least look through the window of that future possibility and "Be Prepared."

I think that about sums up everything that has been going on for the past month and a half. I will try and do a better job of updating my blog with the latest information.

And now I'm off to do something FAR more interesting -- getting the hair did! Catch y'all on the flip side.

New medical FICO score sparks controversy, questions

2011-07-29T10:18:00.000-05:00

See the original article here.

Within the next 12 months, whether you like it or not, about 10 million Americans are expected to be scored -- much like a credit score -- on how likely they are to fill a prescription and take all the pills the doctor ordered, on schedule.

FICO , creator of the widely used credit score that predicts whether you'll borrow responsibly, is now rolling out its new Medication Adherence Score.

FICO based its score on a formula that predicts whether you will take your prescription drugs. FICO says that since correct use of medication is important for patients, medical providers, insurers and pharmaceutical companies, the Medication Adherence Score will help achieve that goal. They predict it will improve therapy effectiveness and reduce health care costs.

The company says those who score low can be targeted for extra reminders and educational efforts, with the goal of making patients more likely to complete their prescribed regimens.

"It's very important to identify those people who may need that additional education and that additional help," says Dave Shellenberger, senior principal consultant in FICO's health care division.

Critics aren't so sure. Since the score uses information on patients' employment, homeownership and living situations, they say that in the current economic environment, the Medication Adherence Score may unfairly target people who have found themselves in challenging financial situations. It could also, they say, open the door for a new way for insurance companies to charge different prices for different scores. This happened in recent years to consumers buying auto insurance: The cost of those policies are now likely based on an auto insurance credit score .

What's in the score?
FICO launched the Medication Adherence Score on June 23, 2011. To create the scoring algorithm, FICO looked at data from a random sample of several million anonymous patients provided by a large pharmacy benefits manager. FICO observed patients who filled (or refilled) their prescriptions and patients who failed to, with the company then identifying those variables that best predicted medication adherence. For the Medication Adherence Score, those variables include age, gender, family size and asset information -- such as the likelihood of car ownership -- data also used by direct marketing companies. FICO says that with only a patient's name and address, it can pull the remainder of the necessary information from publicly available sources.

The scores range from 1 to 500. "The higher the score, the higher the likelihood a patient will be adherent to a drug regimen," FICO's Shellenberger says. FICO says patients who score 400 or higher are likely to take medication as prescribed, while those who score below 200 are at high risk of not taking medication. According to FICO, patients who earn a low score may receive a medication reminder in the form of an email, letter or phone call from their doctor -- tactics that would be too costly to apply across the board.
FICO says those who wouldn't want to receive notices should contact their health care providers and ask about their opt-out policies. High scorers who appear likely to take all their meds probably won't be contacted.

FICO: No insurance implications
What won't happen, FICO says, is your insurance taking a hit because of a low score. "No decision is being made as to whether someone is getting access to health care," says Shellenberger. That's because companies can't use the Medication Adherence Score when deciding whether to provide health insurance and how much to charge for it. "The score was not designed, tested or validated to serve as an underwriting tool. And, underwriting is not an allowable use of the score under the terms of our client contracts," Shellenberger says.

FICO declined a request for a copy of the contract. FICO says consumers can find out if they have scores by asking their health care providers.

Age, gender taken into account
Who's likely to score low? Shellenberger notes that older patients are typically better about taking their medication than younger patients -- until those older patients begin to reach their 80s and 90s -- and men typically are a little better about taking medication than women. "One hypothesis is that women tend to be caregivers and take care of others rather than care for themselves to the extent that they should," he says.

It's against the law for FICO to factor some information into its more-familiar credit scoring formula. It's forbidden from considering, for example, your race, religion, national origin or sex. In addition, it voluntarily does not consider your age or salary. But gender and age are two factors in the Medical Adherence Score. FICO says that's because the score only results in communication with a patient and only uses "publicly available third-party data sources, such as the U.S. Census," Shellenberger says. None of your personal credit information -- the data used to determine your FICO credit score, which is regulated by the Fair Credit Reporting Act -- is used in the medical score, he says.

Whatever it includes, your own personal Medication Adherence Score is coming. FICO estimates that by the end of 2011, 2 million to 3 million patients will have been given a FICO Medication Adherence Score, with a total of 10 million patients expected to be scored during the next 12 months. As a patient, you probably won't be informed of your actual score, however.

A very real problem ...
FICO and medical industry experts both say that medication noncompliance warranted the creation of the new scoring system. According to FICO's press release , medical industry estimates show that up to half of the 3.2 billion prescriptions in the United States annually aren't taken as prescribed, with nonadherence "cited as the primary cause for 10 percent of hospital admissions and 23 percent of nursing home admissions each year." It's also costly. According to a company fact sheet , the cost of medication nonadherence to the U.S. health care system totals an estimated $290 billion a year.

Pharmacists agree that nonadherence represents a challenge. "We recognize that adherence to medication has been a problem for 40 or 50 years. And the ability to identify people who would most benefit from interventions would provide pharmacists and others an advantage in their ability to target services to where they are needed the most. No one would argue about that," says Lucinda Maine, chief executive of the American Association of Colleges of Pharmacy (AACP) in Alexandria, Va.

Patients are unreliable medicine-takers for a variety of reasons. "Some people don't understand the condition that they have. Some people might have high blood pressure but they're not experiencing symptoms every day," says Anne Burns, senior vice president of professional affairs with the American Pharmacists Association in Washington, D.C. Such a lack of symptoms could discourage patients from consistently taking their medication, causing their health problems to return.

As a result, "programs like this are starting to appear in the marketplace," Burns says.

... But is the score the answer?
While there's general agreement about the problem, not everyone thinks FICO has the solution. "There are many programs and assessments for patient adherence currently available and whether this algorithm is better than any others has yet to be seen," says Dr. Richard Perry, an assistant professor of pharmacy practice at Long Island University.

Experts stress that medication adherence is a complex issue, with many factors -- some tied to a patient's finances, culture or attitude -- contributing to failures to take medicine.

For example, Dave deBronkart, also known as "e-Patient Dave," a personal health data rights advocate based in Nashua, N.H., says financial problems once kept him from buying a prescribed medication.

When deBronkart left his last full-time job -- but before his COBRA insurance kicked in to provide continued health benefits -- he went to refill his prescription for generic blood pressure medication. "I was very short on cash," deBronkart says. His prescription, which cost just $4 with insurance, nearly tripled in cost to $11. "All of a sudden, I don't have insurance and the price goes up," deBronkart says. Due to that jump in price, "I didn't buy it," he says, instead delaying the purchase until his COBRA took effect.

Those types of situations may be increasingly common as more patients find themselves unemployed in the tough economy. That could mean low Medication Adherence Scores for otherwise responsible patients. "Apparently under this scoring model, you are at higher risk for not taking your medication and thus have a low score if you, among other things, don't have a job, don't own a home or a car and live alone," says Tena Friery, research director with the nonprofit consumer group Privacy Rights Clearinghouse.

Although some critics have voiced concerns over the Medication Adherence Score and possible privacy issues, other experts say that privacy isn't the problem. "Health plans already have information on what drugs you're on and which ones you went to the drugstore and picked up or got through mail order. The third step, the piece they don't know, is whether you took the drugs," says Deven McGraw, director of Health Privacy Project at the Center for Democracy & Technology.

"I think it's far less of a privacy concern than an age-old concern about how people can use health data to discriminate against people in the insurance marketplace or employment," McGraw says.

What's next?
Looking ahead, FICO says the Medication Adherence Score -- like any of its scoring models -- can be updated about every 18 to 24 months to make it work better. Just don't expect too many details when the company does. FICO guards all its algorithms closely as proprietary information. "I don't know whether they will ever allow researchers to look behind that green curtain of Oz to know what their analytic model is," says the AACP's Maine.

And FICO also isn't identifying additional scoring formulas it could create to predict other areas of everyday life. If it were to do that, however, Privacy Rights Clearinghouse's Friery guesses that it could be some sort of "lifestyle" score. Since poor lifestyle choices can result in high health care costs, the score could be used to target individuals about health initiatives, such as weight loss or smoking cessation.

"Reports are that people of low income or those who live in certain areas are more likely to be overweight, to smoke, to be inactive. I assume that any future scoring, like the Medication Adherence Score, would not be based on an individual's past behavior but rather certain factors that would put them into the high-risk category," says Friery.

Although the "objective of lowering health care costs is certainly a good thing," Friery says that with such a score, consumers may receive unwanted phone calls or other contact about services that don't apply to them. "I can only hope that users of such scores would use caution in initiating these contacts. As a minimum, consumers should be given the right to opt out, to stop future contact, whether or not the targeted behavior applies to them," she says.

Clinic Update

2011-07-14T15:28:00.000-05:00

Today was my one-month post hospital clinic appointment and I'm happy to report that, overall, it was a fairly good visit. My FEV1 has finally shown some improvement after being in the tank last time I was in the hospital and is near baseline. I'm still hanging out around 44% lung capacity, which I'm happy with. Given that a few years ago I was struggling to keep it in the 30's (when I was battling back-to-back pneumonia infections -- SIX times in one year), I am always thrilled to see a higher #.

So the plan for now is to keep on keeping on. My stomach issues are still rampant, but my GI doctors have been less than forthcoming in ways to fix or improve it and I'm just in for the long haul. I have been on the Domperidone for over a month now and while I will say that while I see some improvement over the Reglan (which was doing absolutely nothing to treat my gastroparesis), it is still an everyday problem. In addition to the stomach issues, my doctors are having me checked for possible gallstones, so I have an abdominal ultrasound scheduled for Monday. I have been having sharp, stabbing pains in the area of my gall bladder every time I eat, particularly if I eat anything high-fat (which I typically try to avoid).

I talked with my NP today about scheduling a tune-up in August because I want to be in tip-top shape for September when I go on a cruise. Two of my BFFs, Angela & Brien are getting hitched and are doing a wedding cruise out of Mobile. It's actually the same cruise I went on last year (to Progreso and Cozumel), but ANY cruise is a good cruise in my books. I am definitely looking forward to some true vacation time (even though I qualify for four weeks of vacation with my employer, I typically only get one week and forfeit the rest when I am in the hospital).

And that's about all the updates I have for now. That, and the fact that my legs are numb from allowing my sixteen pound beast to sit in my lap while I've been typing this blog (love ya, Beau-ba-lo!).

Catch y'all on the flip side!

Work Day Survival Kit

2011-05-11T14:41:00.000-05:00

Our volume has been a little light over in the Complaints arena recently, so we've been outsourced on a few different projects that our team is currently involved in. Even still, today has been one of those days where I've watched the minutes tick, tick, tick S-L-O-W-L-Y. It's made me think of all the various things I use to survive the day (and it also gave me a chance to play with the Hipstamatic app on my iPhone).

Sustenance
Yes, I'm a caffeine junkie and Diet Coke is my drug of choice.

The Sound of Music
I absolutely have to have music playing to be able to focus on the task at hand. For some reason, that little bit of background noise helps me concentrate better, whereas utter silence sends me off into la-la land. Pandora rocks my world!

Flower Power
A little splash of color helps brighten up my officle.

Fortitude
You win some, you lose some. The overall strategy to dealing with complaints around-the-clock is being able to step back and laugh. And then put on your big girl panties when you have to face a Federal examiner and answer their questions.

This is the touchstone that I was given at the UAB memorial service for Lauren. It sits on my desk for remembrance, as a reminder. A single glance has served me well at work and at home.

A to Z

2011-05-03T09:56:00.000-05:00

I haven't participated in a fun little me-me in awhile, so while I have some free time, I figured, what the heck...

A - Age: 33

B - Bed size: Queen (just enough room for me and the three kittehs who think the bed belongs to them).

C - Chore you hate: Getting the clean clothes from the dryer back into the closet.

D - Dog's name: Louis, Louie, Rose, Simba, Bailey, Henry and Argyle (aka "Pooter"). No, none of them actually live with me, but they are all my adopted babies.

E - Essential start your day item: Caffeine

F - Favorite color: Pink

G - Gold or Silver: Silver

H - Height: 5' 3"

I - Instruments you play(ed): I took piano lessons as a kid, played the recorder in fifth grade, attempted to play the clarinet (briefly) in middle school and then played handbells in high school. Handbells were, by far, my favorite.

J - Job title: Compliance Analyst III

K - Kid(s): My kittehs (Issy, Beau, and Hallow) are the only children I'll ever have.

L - Living arrangements: I'm a city girl.

M - Mom's name: Mona Lynn

N - Nicknames: B, B-Ri, Shortcakes (that's an oldie from high school).

O - Overnight hospital stay other than birth: To many too count!

P - Pet Peeve: Bad grammar and misspelled words. Hypocrites.

Q - Quote from a movie: "I'm your huckleberry..."

R - Right or left handed: Right.

S - Siblings: Not a single one.

T - Time you wake up: During the week, I am usually up around 6 AM. I don't need an alarm clock, I have cats. On the weekends, I like to sleep until 8:30 or 9.

U- Underwear: Yep, I wear underoos.

V - Vegetable you dislike: BRUSSEL SPROUTS.

W - Ways you run late: I'm usually a pretty on-time person.

X - X-rays you've had: I couldn't begin to count the number of chest x-rays that I've had. I've also had my ankles, wrists, and elbow x-rayed at different points, usually due to sprains or breaks.

Y - Yummy food you make: I don't. I can handle brownies from a box, but that's about the extent of my cooking ability.

Z - Zoo favorite: Penguins, sea lions and big cats.

Thankful Thursday

2011-04-28T14:12:00.003-05:00

I've never participated in one of Ronnie's (of RunSickBoyRun fame) Thankful Thursday postings before. I probably don't say it often enough, but I am thankful for all of the wonderful things that I have in my life (my friends, my family, my co-workers, and my health among others), but today seems like a most appropriate day to truly be thankful.

Yesterday was -- weather-wise -- one of the most tragic days that we've seen in the great state of Alabama. The death toll is currently 162 and it will be several more days before the final counts are complete. Why? Tornado season, which typically runs from March to May for the Heart of Dixie. We experienced an EF4, possibly an EF5, tornado that was ON THE GROUND from Tuscaloosa, AL to Birmingham, AL (about 60 miles) that was at times more than a mile wide. Below is a video of the devastation that can be seen in Central Alabama from ABC 33/40 (home of James Spann, the world's greatest meteorologist).

Please take about five minutes out of your day to watch this video and remember all of the families and businesses that have been devastated by the power of Mother Earth.

Fortunately, my little corner of the world escaped damage. I live downtown and the storm tracked about five miles north of me. My condo is on Red Mountain, directly below the TV stations, so the view from the cameras atop the station were essentially exactly what I was seeing from my front window. What appeared to be a wall of clouds a mile wide was actually a tornado devastating my hometown.

This picture is from the UAB campus, which is about six blocks north of me. What looks like a wall of clouds is actually the tornado that struck north Birmingham.

I'm not sure of the exact location of this picture in relation to my house (it appears to be a little west of my condo looking back downtown). The white office building in the center of the photo is where I work.

This is a view of the tornado from BBVA Compass' corporate headquarters (my employer). This is a block south of my office (the building in the left corner of the photo is actually my office).

Great Strides 2011 - We're going to BLOW CF AWAY!

2011-04-06T15:09:00.004-05:00

Dear Family and Friends,

It's that time again! Please consider joining us for the annual Great Strides event in Birmingham, AL on May 14, 2011. Our goal this year is a simple one ... it's all about BREATHING EASIER! GREAT STRIDES is the CF Foundation’s biggest fundraiser and provides us an opportunity to help make a difference in the lives of those with Cystic Fibrosis.

Cystic Fibrosis is a genetic, life-threatening disease that affects approximately 30,000 children and adults in the United States. According to the CF Foundation’s National Patient Registry, the median age of survival for a person with CF is now approaching 37 years.

Advances continue to be made in finding a cure, but your help is needed to help keep up the momentum of this life-saving research. I know that the last few years have been hard on many, but I hope that you will be able to help us raise money for a cure. Remember, every donation - large or small - goes towards supporting the Foundation's goal of finding new & novel therapies for CF patients. As you may know, the CF Foundation receives no government funding. Therefore, the funds that you donate go directly to helping us find a cure.

This year, I will be walking with the other members of the UAB Adult CF Team, with a goal of raising at least $3,000 by May 14, 2011 in Birmingham, AL. With that in mind, please save the date in your calendar! Plan on joining the members of the UAB Adult CF Team for food, fun, and music at Veteran's Park in Birmingham (Hoover), AL. I know this year’s goal can be met with your help!

If you would like to participate in the walk, you can log on to my website at: http://www.cff.org/great_strides/BrandiThorpe. If you have any problems registering online, please let me know and I will be happy to process your registration manually. You can reach me via e-mail at bankrgrl -@- gmail.com

If you can't join us for the walk, please consider making a donation. Donations are accepted online, through a secure server, provided by the Cystic Fibrosis Foundation. Just click the "Donate Now" button on my blog to make a donation that will be credited to our team. Any amount you can donate is greatly appreciated!

I look forward to seeing all of you who participated last year and hopefully a few new faces. Please help this be an outstanding year ~ let's start taking GREAT STRIDES to cure CF.

Thank you!!!

Updates, Updates, Updates

2011-04-05T12:59:00.003-05:00

At the end of February, early March, I had the opportunity to travel to Orlando, FL for work. I attended a conference (training) related to my job. For four days, I studied the basics of Deposit & Lending Compliance. I know that might not sound exciting to many of you, but YES, I actually enjoyed it. I was familiar with most of the deposit regulations (Reg CC, Reg DD, Reg E, among others) but the lending session really kicked my butt (especially Reg Z & RESPA ... my brain was toast by the end of Day 2!)

While I was in Orlando, I also got to have a little bit of fun. (Don't tell my boss that!)

On Wednesday night, I met up with an old friend ... we haven't seen each other since 5th grade, when she moved back to Japan. We'd kept in touch over the years via letters (yes, real ones) and then found each other on Facebook not too long ago. When she saw my post about being in Orlando, she contacted me that night and we immediately decided that we had to get together. We met up in Downtown Disney and enjoyed dinner at an Irish Pub (where we had meat pies ... savory & sweet pies for you Sweeney Todd fans). Later that night we went over to the Magic Kingdom where I got to do some shopping and we watched the fireworks show. All in all, it was a great night!

On my last night there (after the conference was over) I decided to catch the final performance of Wicked. I love, love, love this show and this was my second time seeing it. Although the Bob Carr Performing Arts Center was a little smaller than I expected for a city the size of Orlando, it was a nice setting. Even better, the tickets I scored were three rows back (which I had no idea when I purchased). To say I was thrilled would be putting it lightly.

15 minutes til curtain!

After a whirlwind week, I was glad to arrive home on Saturday. I was in kitteh withdrawal after a week in a hotel (Although I highly recommend the Homewood Suites in Maitland, FL if you are ever visiting the area, it was a little off the beaten path. However, it was very close to the office my training classes were being held in and the rooms and free food made it even better).

I was home for a couple of days when my body crashed and I had to be re-admitted to UAB Hospital. So, on March 9, I checked in for sixteen fun-filled and exciting days. Although it meant celebrating my birthday in the hospital, it wasn't a bad visit overall. I am now officially back to work and back up to all of my old tricks!

Happy Heart Day!

2011-02-14T12:57:00.002-06:00

Happy Valentine’s Day to all of my lovely friends and family!

A Lesson Learned

2011-02-01T18:55:00.000-06:00

Word to the wise: When you own three cats who think your closet is their personal playground, take an extra close look at yourself before you leave the house in the morning.

For some reason I was in the mood to dig out a shirt from the depths of my closet that I haven't worn in quite a while. It's a cute black & white silk floral top from Ann Taylor. It's short sleeved, so I grabbed a jacket to wear over it (the temperature in my office building fluctuates wildly - usually somewhere between the Mojave Desert & Antartica depending on the time of day).

On my first restroom break, I happened to glance in the mirror and what do I see? A tear in the front of my shirt, held together by a couple of threads. Looking more closely, I realized it was the nefarious work of one of my kittehs. My guess is that some unknown hellcat probably used the shirt to pull himself up so they could prance along the rod.

Fortunately, the pattern in the shirt hid most of the damage and LUCKILY I decided to wear the jacket this morning. Granted, we might be "business casual" in the office, but I think wearing cat-clawed attire is taking it a bit far.

Hello? Hello? Anybody out there?

2011-01-20T15:20:00.000-06:00

It's been a while. My apologies for playing least in the sight the past few months, but I've had a serious lack of motivation to write - which is unusual for me. I hesitate to write when I have nothing new to report and (fortunately) life has been pretty routine lately (you know the drill - work, sleep, play, hospital {rinse & repeat}).

I survived another 20-day visit to Club Med in December and made it home just in time for the holidays. Spent lots of time with the fam, which was fabulous and started back to le job two days after Christmas. Since then I've been absorbed in work and trying to stay well.

Today was my one-month post-hospital clinic visit. Not exactly a stellar report, but it's been a pretty sub-par month for me. I haven't been Sick (in my world there's "Sick" (which equates to hospital time) and "sick" (which means I don't feel great, but not bad enough that I'm willing to do anything about it). I've had a stomach bug and some other infection that I couldn't really pinpoint (but I knew my body was fighting something because my lymph nodes were swollen to about the size of a nickel for about a week & a half).

So today, my FEV1 was down 7% from discharge, which was Not. Cool. The nurse threatened me with another round of IV abx but I managed to sweet talk my way into two weeks of oral abx (Levaquin & Bactrim).

It also appears that Cayston and I are going to have to part ways. After six days of SOB & wheezing and three days of hemoptysis, I decided to take a break. Determined to give it the old college try, I waited three days and decided to go one more round. Cayston = 2, Brandi = 0. Based on that, the docs recommended stopping the Cayston for now. If we have to bring it back into the arsenal later, we'll see if I can tolerate it then.

In other news, I'm very excited about an opportunity that I've received at work. Beginning Monday, I'll be shadowing a new manager and will begin learning how to do Compliance Monitoring (reviews). I'm very excited because this keeps me with the same team that I've been working with, but allows me to move outside the world of official complaints. Seeing as how I've been working with complaints in some form or fashion for the past seven years, I'm really looking forward to the change. It will also be a great opportunity to learn each regulation more in-depth which will be a huge bonus when I start studying for my CRCM (Certified Regulatory Compliance Manager) next year.

That's all for now, folks. Catch ya on the flip side!

Playing Dress Up

2010-11-08T11:55:00.001-06:00

This blog is going to be a double feature! Although I initially intended to write separate posts about the past two weekends, I've somehow managed to let time escape me yet again. Therefore, it's a 2-in-1 pictorial about how I've gotten to do one of my favorite things for the past two weekends - play dress up!

Three weeks ago, my aunt, cousin and I ventured up to Florence, AL and spent the day at the Alabama Renaissance Faire. This is our second year to attend the Faire, but our first dressing up for the event. My aunt opted for the look of a noble lady, my cousin was a medieval sorcerer and I was your local tavern wench. In all, the day was an absolute blast.

Among the sites to see, there were men in kilts, trolls, ruffians & barbarians, powerful magicians, enchanted statues and, of course, the nobility.

For more pics of the day, check out Facebook.

And last weekend we celebrated my favorite holiday of all - HALLOWEEN! In case you don't know, Halloween is kind of a BIG deal in my family. As soon as one Halloween ends, we start planning the next year's theme (seriously, my cousin and I just had a lengthy discussion yesterday over lunch about an escaped psycho-Hannibal Lecter type theme next year). Anyway, this year we opted for a medical horror and it turned out better than we could have asked. We easily had 300+ trick or treaters, went through eleven large bags of candy PLUS my aunt's secret stash and still ran out by 8:30 PM.

We've spent so much time talking about how great Halloween night is that my family from Virginia decided to venture down and check out the shenanigans. That's my cousin, the devil & me this year.

Again, more pics are up on Facebook. Check 'em out if you have time! How did you scare away the spirits this Halloween?

We Took Their Breath Away!

2010-10-27T14:27:00.000-05:00

Our first event as a Young Professionals Board - A Breathtakingly Artistic Event was Friday, October 22, 2010 and was - in one word - FABULOUS! Although the final totals aren't in yet, I believe we raised close to $500 for the Cystic Fibrosis Foundation.

The event was planned and coordinated by Alexis McBrayer in honor of her husband, David, who passed away from Cystic Fibrosis last August.

Working with various members of the YP Board & Véronique Vanblaere from the Naked Art Gallery in Birmingham, AL, we enjoyed some wonderful wine & food (donated by Whole Foods Market), and the opportunity to browse Véro's collection of fun & funky art. Véro was also generous enough to contribute 10% of the night's sales to the Foundation.

The doors opened around 5:30 PM and our first guest showed up shortly thereafter. I think he might have enjoyed the wine & snacks more than the art, but we certainly didn't mind. It was just exciting to have people there, showing support for the Cystic Fibrosis Foundation. In all, I would say that we enjoyed seeing between fifty and seventy-five people attend the event.

Throughout the night, people bid on items and enjoyed browsing the store:

Miss H. may have been our youngest customer, but even she found something to buy (thanks, Mom!):

We had to call an end to the bidding wars around 8:00 PM so that we could start announcing winners. With tickets to upcoming events like the Ray Lamontagne and Levon Helm Show, the ASC Holiday Comedy Show starring Joan Rivers, gift certificates to Silvertron Café and some amazing art by local artists, the auction was a success!

Thanks to all those involved with putting together a successful first event. Way to go!

Here she is ... Mrs. Bachelor Girl

2010-10-25T13:33:00.000-05:00

My friend and sister, Kelly of Bachelor Girl fame (soon to be Mrs. Bachelor Girl) got married last weekend! FINALLY! I have nothing to say, other than ...

Congratulations, KPP!

Here are a few of my favorite pictures from the day:

Magic in the Moonlight

2010-10-25T12:59:00.003-05:00

Our CFF Gala is right around the corner. Unfortunately, I'm not going to be able to volunteer this year as I have other Halloween plans, but I wanted to share information about this upcoming event with my readers. If you are interested in attending this fantastic event, see below.

SATURDAY EVENING, OCTOBER 30, 2010

PRESENTED BY: ROGER & DIANE APPELL

HOSTED BY: DR. & MRS. BARRY GINSBURG

ENTERTAINMENT BY: VANN BURCHFIELD

"Magic in the Moonlight," presented by UAB Administration / UAB Health Systems and AT&T, is set this year for Saturday, October 30th, with a relaxed atmosphere in the home of Dr. & Mrs. Barry Ginsburg. Co-Chairs Roger & Diane Appell have once again brought together some of the best restaurants and chefs in Birmingham who will present their signature dishes, including Michael's, Bongiorno's, John's City Diner, Gianmarco's and Zea Rotisserie & Grill, as well as Chef Andy Camardella. World class saxophonist Vann Burchfield will entertain us. Vann has had the honor of performing at the White House for their Annual Holiday Open House during the Christmas season for the past four years. You’ll want to be sure to bid on a variety of auction items, as well as our “Diamond on Ice” courtesy of Barton-Clay Fine Jewelers.

We are very pleased to announce that Dr. J.P. Clancy is our Honoree this year, and will be presented the Sheena Diane Ayers Humanitarian Award that evening. Dr. Clancy is well known and loved by so many of our CF families he has helped care for. Dr. Clancy also plays a huge role in our CF research shared worldwide including recent breakthrough studies.

For tickets, sponsorship or additional information on Magic in the Moonlight, contact Jennifer McEuen of the CFF Alabama Chapter at (205) 870-8565. You can also buy tickets online through the CFF Alabama Chapter.

An Artistic Fundraiser

2010-10-18T11:02:00.000-05:00

I thought I would share a few of the fun & funky pieces that are going to be available at our Breathtakingly Artistic Event.

This is just a small sampling of what will be available on Friday. Check out the Naked Art Gallery for more amazing art!

A Breathtakingly Artistic Event

2010-10-14T13:25:00.000-05:00

Save The Date!

Art Show & Silent Auction Benefiting Cystic Fibrosis Foundation

Location: Naked Art Gallery, 3831 Clairmont Avenue, Birmingham, AL 35222
Date: October 22, 2010
Time: 5:30-8:30 pm
Sponsored by: Naked Art Gallery, Silverton Cafe, Zoe's, and the historical Forest Park Village

This is our first event sponsored by our newly formed Young Professionals Board. It was coordinated by Alexis McBrayer, who recently lost her husband to Cystic Fibrosis. This fundraiser is in honor of David McBrayer and all the other wonderful people who have fought the battle against CF.

Please join us! In addition to the Art Show & Silent, Vero VanBlaere (of the Naked Art Gallery) has agreed to donate 10% of all sales during the event to the CF Foundation.

FSA Accounts - New Rules 2011 & 2013

2010-10-13T19:21:00.001-05:00

I'm not sure how many others utilize the tax benefits of an FSA account, but be forewarned, things are about to change.

In 2013, the maximum contribution to your FSA account will be limited to $2500.00. This is going to be a huge drawback for me as I currently contribute $5000/yr to my FSA and that barely covers 1/2 of my medical expenses. $2500 will cover one hospital co-pay ($1725 for me) and about half of the expense for one order of prescription refills (a three month supply), which (obviously) I spend three or four times a year. Needless to say, this is going to be quite a hit on the budget for me.

Also, in 2011, if you use your FSA account to buy over-the-counter items such as Nyquil, Benadryl, Claritin, etc., you will have to provide a prescription from your doctor in order for it to be an approved FSA purchase. You can still buy these items out of pocket without a prescription. Read this IRS.gov article for more details.

These are two new regulations that are part of the Patient Protection and Affordable Care Act enacted by Obama that will greatly affect the lives of CF patients. BE INFORMED! You can read news releases and legal guidance from the IRS here.

Halloween Fever

2010-10-13T10:02:00.000-05:00

Samhain ("sow-en") is, without a doubt, my most favorite holiday of the year. I'm the girl that starts planning my costume sometime around January and begins dreaming up the gory details for the night throughout the year (it's kind of A. BIG. DEAL.). This year my plans are two-fold - I'll start the night over at C.'s house with my family and about 300 trick or treaters and then end up the night at The Greatest Halloween Bash Ever, hosted by my friends.

This year, we're planning for a medical / gory / slasher / zombie setup. My cousin, A. will be the evil doctor and I'll be the assistant nurse who was attacked by zombies on her way to work. I ordered three costumes this year, just to make sure I had a good selection. There was the original Zombie Nurse outfit:

Unfortunately, this costume didn't fit right, even though I really liked it. Next up was Nurse Mercy:

This one didn't work at all. You know, when you order a $29 costume, you should expect it to look like a $29 costume. Not at all what I was going for. Finally, there was the little costume that had quite a bit of potential:

50's style Vintage Nurse

This ended up being the PERFECT costume. I love the style of the dress and with a pair of scissors and some fake blood, I'll be be able to zombify the dress with ease. I'm especially looking forward to playing with my hair and makeup (especially the eyes) to get the effect that I'm looking for.

18 days and counting...

the new ride

2010-10-08T11:36:00.000-05:00

I've been itching to buy a new car for some time now. It's quite well known that along with the CF gene that I inherited from my Thorpe family, I also inherited a car-crazy gene. The results? An intense desire to go fast, look good, and always want something new. It's a sad affliction, but one that I am happy to suffer with.

With that said, I recently sold my car to my father (a 2003 Mercedes C32 AMG) and purchased this lovely lady about two weeks ago:

From Friends and Fun

She doesn't have a name yet, other than "the G." What do you think? Any suggestions?

Alive and kickin'...

2010-09-24T12:15:00.000-05:00

You know it's been awhile since you've posted when your doctor asks if you've forgotten about your blog at your most recent clinic visit. I haven't exactly FORGOTTEN but it has been on the back burner for quite awhile now (looking back, I'm only five days shy of a two month lapse in posting). My apologies.

Admittedly, this last hospital visit (in August) was a good opportunity to write, but I hardly touched my computer while I was there. Literally, I think I can count on one hand the number of times I used it during this admission. I was gorked out on Prednisone for the majority of my stay which makes a very anti-social Brandi. Between that and the never-ending nausea that is my life on antibiotics, you can imagine that writing a pretty little post was the least of my concerns.

Since I've been home, life has been ... well, BUSY. Looking back over my calendar for the past month or so, there hasn't been a week where I have been home more than one night a week. In between the J-O-B, I'm still the treasurer for our homeowner's board, I've written a newsletter for Delta Gamma and attended numerous board & committee meetings for our newly formed CF Young Professionals Board. Methinks I might be stretched a little thin, but I'm going to continue trying to juggle these balls for as long as possible.

In other, more exciting news, my bestie (Dā) is home from the UK for an extended visit. She gave birth to a beautiful little girl in March and I've finally gotten to lay eyes on Miss Lily, who is cuteness personified. For the girl who only has a thimbleful of maternal instinct, I've spent an awful lot of time looking for cute baby outfits at Baby Gap and Old Navy.

Last Sunday was an absolute blast! Dā and I ventured over to an old friend's house to spend some time with an amazing group of people that we haven't seen in fourteen years. If you're counting, you'll be able to guess that these were my old friends from high school. We spent the entire afternoon (and well into the evening) catching up on everybody's happenings since our glory days at THS. It was wonderful to reminisce, laugh at pictures and compare stories. Turns out, my friends rock as much now as they did then.

What else? What else? I know I'm forgetting a million and one things that have happened since my escape from jail. Hmmm.....

--------------------------------

Oh well! Since I can't think of more of the past to tell, I'll leave you with a few things that I'm looking forward to in the next few weeks.

* the first Birmingham Broadway show of the season -- Legally Blonde;
* spending more time with Dā and Lily-bug before they hop across the pond again;
* the Renaissance Faire (I still need something to wear); and
* HALLOWEEN (I've already ordered three costumes!!!)

Ciao!

Fiddle-Dee-Dee!

2010-07-29T14:05:00.000-05:00

What a month it's been. I'm EXHAUSTED. And, I must admit, I am looking forward to a weekend of doing absolutely nothing. Since the end of June I've helped redecorate a kitchen, spent a long weekend in Virginia, hosted a pool party, and took a quick trip to Atlanta. Last week I spent the latter part of the week & the weekend with my family celebrating my cousin's graduation. In between, I've attended board meetings and birthday parties. And, lest I forget, I've worked at the real job. You know, the one that pays the bills.

I'm finishing up my first full month of Cayston. Great stuff. I'm almost three months out of a tune up (August 7) and still feeling decent. Not great, but decent. I truly am exhausted by the end of the day and typically go home and catch some zzz's before tackling any chores around the house. And, although the kittehs are enjoying the extra snuggle time, it's really cutting into the few hours I have each evening to get things accomplished.

About two weeks ago, we got an early start and headed over to the ATL. We spent Saturday afternoon exploring Margaret Mitchell's apartment (affectionately referred to as "The Dump"). This is where she spent several years writing Gone With The Wind. Later that evening, we had a fabulous dinner at Nakato Japanese Restaurant and then journeyed over to the Fox Theatre to see Phantom of the Opera.

We had a few newbies with us, which is always fun. I know that they enjoyed the show but I don't think they were quite as enthralled as my aunt, cousin & I are! According to my Playbill, this is the final season for the US Tour. It will still be showing in London, New York, and Las Vegas. What a tragedy! Actually, it just gives me that much more desire to get my tail over to England see a performance at Her Majesty's Theatre.

On Sunday we grabbed a quick breakfast at the hotel (cold cereal, anyone?) and then scurried over to the Georgia Aquarium. My favorite exhibit? The penguins, of course! Actually, all of the exhibits were fascinating and I really enjoyed seeing the beluga whales, the sea otters, and the sharks. They have a swim or dive program where you actually have the opportunity to swim with thousands of fish, sharks, and rays. It's a fairly shallow dive and I'm thinking about asking my Dr. if he thinks my lungs could handle it. I would love to learn how to scuba dive.

LA! That's all for now ... must get back to work so that I can pay the bills.

Oh, before I sign off, I'm ecstatic to hear that CysticGal finally got a new set of breathers. At last report she was already off the vent and trying to talk. Go Beth!!!

Flash Me Friday

2010-07-16T21:45:00.000-05:00

Well, I must admit that I have not done a great job at keeping up with Flash Me! Fridays (the brainchild of Jen over at The Groettum Family blog) but once I saw this week's flash, I knew I had to participate.

This week's flash: What's your favorite piece of art in your home?

This was a HARD decision because I have tons of art on every wall in my home and I love, love, love every piece. But if I had to give a nod to one particular piece, I think it would go to this one:

My grandmother had this painting commissioned by a local artist in Wilmington, NC. It was a birthday present that she and my grandfather gave me about six or seven years ago. I cherish it because, in one quick glance I can relive the many, many years I spent in a leotard & a pair of ballet slippers. Dance was (is) life!!! I don't dance as often as I used to, but I'm fortunate in the fact that the Alabama School of Ballet has a great selection of adult classes to keep my feet busy.

And the results are in ...

2010-07-14T19:19:00.001-05:00

AMBRY results, that is.

My sweet doctor e-mailed me the results of my Ambry test today, even though he is technically still on vacation. I have a copy of the report which says:

DeltaF508 / p.S945L (with a 7T/9T variant)

"This mutation has been associated with severe pulmonary disease, elevated sweat chloride levels and variable pancreatic sufficiency."

I'm guessing that the first two charecteristics are typical to the DeltaF508 mutation and the last to the p.S945L.

I've been fortunate enough to have moderate pulmonary disease for the past several years and I've been pancreatic sufficient (for the most part - I have to take enzymes when I eat high fat / greasy foods). I do have other unrelated stomach issues, mainly severe reflux and gastroparesis but that appears to be something that runs in my family.

Dr. C. said that he needed to do some homework because my second mutation is "very rare." He also mentioned that he believes it may be responsive to some of the potentiator drugs (VX770) and may also be related to some of the current research that he is doing, both of which he finds encouraging (and so do I!).

That's all the information I have for now. After doing some digging on Google, I found several articles that mentioned the p.S945L mutation but none that gave good specific information about it. A search of the Cystic Fibrosis Mutation Database didn't turn up much information either.

P.S. There is a small bitchy part of me that would like to say "suck it" to a doctor (who shall remain nameless) from my past that essentially told me I didn't have CF, just couldn't have CF and should never have been diagnosed as CF because I didn't fit the "textbook" definition. I guess I haven't been imagining things all these years.

2010: 4th of July

2010-07-07T20:26:00.000-05:00

What a wonderful weekend! I went to Charlottesville, VA this past weekend to see my mom and spend the holiday with my family. The trip was a total surprise for my mother as she had no idea that I planned on coming. When I strolled into my aunt's living room at 10 PM on Friday night, I can only say that the look on my mother's face was priceless. She literally jumped off the couch and caught me up in the biggest bear hug I think I've ever had.

On Saturday we all loaded up and headed into Scottsville, VA to see the 4th of July parade. Yes, it was the 3rd but in this small town, Sunday is still a day of rest and the volunteer firemen long ago decreed that if the holiday ever fell on a Sunday then the celebrations would be held on Saturday.

Don't let the map fool you ... I think the star representing the town might actually be bigger than the town itself. Scottsville is the epitome of small town America -- one main street, no cell phone service, and a population of around 500 people (according to Google). But it's also peaceful and idyllic. It was nice to spend a day away from a world obsessed with iPhones, Facebook, and celebrities.

The parade was much as you would imagine --

led by the mayor,

featuring bagpipe-playing men in kilts (my personal favorite!)

followed by quite a few firetrucks (with sirens!),

old cars,

middle-aged cars (???)

new cars,

tractors,

t-ball teams and pageant princesses.

All in all, it was a great display of small town America with a heaping helping of USA pride thrown in.

L. and I, beating the heat with some frozen kool-aid pops

(notice I'm sporting my fave new shirt, courtesy of Piper!)

my mom and I

After the parade, we packed up our chairs and spent the rest of the afternoon with family friends, eating massive quantities of BBQ and splashing our feet in the pool.

my cousin, A.

check out that beautiful sight

L. was absolutely enthralled and decided that she MUST have this car.

On Sunday, my family hosted our own party and quite the crowd show up for some great food ... hamburgers, hot dogs, potato casserole, potato salad, two kinds of macaroni salad, cake, and peach ice cream. Nom. Nom. Nom.

My cousins and I scrounged up a few sparklers and pop pop snappers. We finished off the night by seeing an amazing fireworks display hosted by the town at McIntire Park.

(image courtesy of http://george.loper.org/weblog/?p=1295)

On Monday, it was back to reality and time to head home. My aunt and I geared up for the 622 mile journey home which we accomplished in a little over nine hours. And although it was a great, great weekend, I was more than glad to be home in my own bed on Monday night.

All Quiet On The Western Front

2010-06-29T12:16:00.000-05:00

I've been quiet as a mouse recently because free time has been scarce and hard to come by. Looking at my calendar for the next month or so it seems I have something going on every weekend and almost every day. I'm not sure if that's a good thing or a bad thing!

This past weekend we began a much-needed renovation of my grandmother's kitchen. About fifteen years ago, when sponge painting was all the rage we painted my grandmother's kitchen.

We also thought we were being ever so creative by adding a wallpaper border. In all honesty, it was a very pretty border (reminiscent of an English tea garden) but it definitely needed to go (by the time I took these pictures we'd already spent about three hours taking it down).

Out with the old! My one requirement for this remodel was that my grandmother have new, working ceiling fans. As you can see we had to do a bit of repair work around the old ceiling fan. After that was done, we set my cousin to the ever-so-fun job of cleaning the ceilings. About a gallon and a half of 409 later, the ceilings were freshly scrubbed and ready for primer.

Progress! First coat of paint on the walls and new ceiling fan fixtures going up.

Our activities director (a/k/a Papa). He made sure everybody was working hard!

The finished project. It's rather hard to tell, but the walls are a pale ice blue ("Cool Sheets"). It's a very refreshing and peaceful color.

Somewhere in the middle of all this madness my grandmother found the time to bake a mouth-watering, delicious pound cake. Yum!!!

And you know how one project always leads to another? Next up:

new kitchen floors, and

having the bar room painted! Just in case you're wondering, yes, that's a Christmas tree. No, don't ask.

Many thanks to Cheryl, Alex, George, and Mike Green for their help in making this project happen.

Singulair - $20 Off Coupon Up For Grabs!!!

2010-06-16T20:37:00.002-05:00

Anybody take Singulair? I have a coupon for $20 off a qualifying prescription that I won't get to use before it expires. Happy to pass it on to someone that can use it.

Just leave me a comment here or on Facebook ... he/she who asks shall receive!

UPDATE: The coupon has been claimed. If I get any others that I can't use, I'll share.

The Transition

2010-06-13T10:12:00.001-05:00

My aunt, a nurse at Children's Health System, was recently working on her Magnet Recognition Program and the focus was on the transition from pediatric care to adult care. She asked me to write a couple of paragraphs about my experience:

In 2002, I was 24 years old. That year, I faced an important transition in my life – not from childhood to adulthood, as one might imagine, but similar. I was next in the group of patients being transferred from pediatric care at The Children’s Hospital of Alabama to adult care at UAB Hospital.

As one of the first patients to transfer to UAB, we were truly the “guinea pigs." Our transition was difficult. Life at Children’s was good – our nurses cared for us not just as patients, but also as family.That happens when you grow up in the hospital – spending days and weeks in “Club Med” several times a year.We were treated as “VIP” – in short, we were spoiled. While we had to adhere to a treatment program, we were allowed to essentially do as we pleased. There was an activity room with games and movies to keep us busy and we were allowed to go out on “pass” – which allowed us a chance to return to real life (even if just for a couple of hours) in the midst of doctors, antibiotics, and respiratory treatments.

Life at UAB was different. We were little fish in the big sea of patients at UAB. The doctors and nurses didn’t know us, didn’t understand our routines, and were simply not used to caring for patients like us. We were expected to stay in our rooms. For insurance reasons we were no longer allowed to leave the hospital. We had to be adults. Imagine our shock.

I know now that it wasn’t difficult just for the patients, though. Over the past eight years, we’ve faced many challenges and a steep learning curve, but we’ve done it together. Our doctors and nurses have grown as use to us as we have to them and they are now our “family” just as much as those from childhood.

What was your transition to adult care like? Were you transferring into a new adult program or one that was well established? I'd love to hear what other CF patients have encountered.

clinic and other assorted CF stuff

2010-06-04T11:27:00.003-05:00

Four weeks. That's how long I've been out of Club Dread, and my, how time has flown. Not that I'm complaining. In fact, I'm rather in the mood to celebrate.

Why?

Possibly because I blew the best #'s I've seen since 2006!

To be honest, it actually took me by surprise. My sinuses have been jacked up for the past week or so and I felt like my #'s might reflect that. Happy to say I was WRONG. The docs attribute part of it to the fact that I'm finally getting my blood sugars under control. As my body is expending less energy on keeping my sugars in check, it can spend more energy on breathing. I've also been on the Cayston for a month and I have no doubt it's also helped.

My next appointment was to participate in a CF study. I can't remember the exact name of the study but it involved taking biopsies on tissue samples to test CFTR functioning. The study has been ongoing because they were having problems recruiting people for the second part of the study.

I'd like to keep this family friendly but there's really no nice way to describe the procedure (flexible sigmoidoscopy), other than by saying it involves going in the out door. Yes, the doctor will tell you "it's only 10 centimeters," but I can guarantee you that it is the longest 10 centimeters you can imagine. Thanks the gods for Demerol and Versed. Although I can say that the whole experience wasn't that bad, there is NO WAY I would have done it without happy-I-don't-remember-anything drugs.

I'm sure you're wondering how exactly I let myself be talked into doing something like this. It's certainly not something I volunteered for! However, the whole study happened to be headed up by one of my favorite childhood doctors and he dangled a prize in front of me that I couldn't turn down -- an AMBRY genetic test.

After spending the past six months fighting with Blue Cross about WHY I should be re-tested, it was time to go another route. When Dr. C asked me what he could do to entice me into participating in the study, the little light bulb in my head flickered on. I explained the problems I've been having with insurance approvals and we quickly came to an agreement that the research program would cover the costs of the genetic screening if I would participate in the study. Too sweet of a deal to turn down, in my esteemed opinion.

Now I just have to find the patience to wait ANOTHER four weeks on the results. Argh!

Great Strides Report & T-Shirts!

2010-05-28T13:05:00.001-05:00

Just wanted to report that the UAB Adult CF Team had an amazing 2010, turning in more than $4100 at our event last Saturday. We've had a few more donations since then, but I am ecstatic about what we pulled off this year.

The weather was beautiful (a bit hot) and we FINALLY had a year with no rain in the forecast. What could make our weekend any better? The fact that the Alabama Chapter raised over $139,000 for CF research this year!!!

Like many other teams, we've been selling t-shirts to help meet our fundraising goal. Our shirts turned out great this year and I have a few extra that are available.

(back of shirt)

(front of shirt)

T-shirts are available in short sleeve or long sleeve. As of May 28th, I only have five shirts left, but if enough requests are received (minimum of 12), additional shirts can be ordered.

Sizes Available:

1 Medium (Short Sleeve)
2 Large (Long Sleeve)
1 X-Large (Short Sleeve)
1 XX-Large (Long Sleeve)

Shirts are $15 (including shipping) and payable by cash, check or via Paypal (e-mail me for instructions).

The above pictures are the artist's rendering. I'll take a few pics of an available shirt and post this evening.

CF Awareness Month

2010-05-19T18:10:00.000-05:00

With May being CF Awareness month, I wanted to do my part and spread the love. If you have a minute, check out some of my favorite blog stops:

1.RunSickBoyRun - everybody knows and loves the famous Rondi! If you are in need of exercise inspiration, this is the place to go.

2.CysticGal & A Matter of Life and Breath - Need some pre-transplant perspective? This is it.

3.The Unknown Cystic - IT. IS. HYSTERICAL.

4.Welcome to Joshland! - Check out Josh and Moganko for some education, inspiration, and general silliness.

5.My CF Journey with God - This is my IRL friend Katey and simply put, she rocks. She's an inspirational hard worker and one of the nicest people you will ever meet. Katey is a wealth of knowledge about transplant. She had a living donor transplant six years ago and has gone on to graduate college and is (hopefully!) off to nursing school next.

Our Great Strides walk is this Saturday. I'll be there with bells on!

Catching Up

2010-05-18T04:21:00.004-05:00

I have a bad habit of being quasi anti-social when I am in the hospital (of which I was for the better part of last month). Although I wasn't terribly sick upon being admitted, I had been out of the hospital for a considerable length of time (for me). In addition, a mild virus / cold decided to make its presence known around the time I was admitted precipitating yet another round of Prednisone.

Prednisone and I have a love / hate relationship, at best. I started and finished this course with the usual range of side effects, including CF-related diabetes. In the past, I've had to treat blood sugars while on Prednisone (with insulin) but my sugars tended to normalize once the course was complete.

Apparently my pancreas has decided that it doesn't want to participate in this little game any longer. I'm now an official insulin-pen carrying, blood sugar checking member of the diabetes world. Of course, CF-related diabetes is something that tends to be expected as Cystic Gal's age gracefully, but it wasn't something I planned on encountering anytime soon.

Speaking of planning, I'm fast discovering in the diabetic world that daily life requires some amount of planning, scheduling, and thinking ahead. As living by a "schedule" is the bane of my existence, it's taken some time to adjust to this new lifestyle. Of course, having experienced a few true diabetic "lows" over the past week has proved to be a great source of inspiration in getting with the program.

Along with "di-a-beet-us" (so said Wilford Brimley), I've been dealing with high blood pressure. The prevailing opinion is that the high blood pressure is because of, and/or related to the diabetes and that with control of one will come control of the other. But until it normalizes, I'm taking a small dose of blood pressure medicine once a day.

Learning to manage diabetes in the hospital was much easier than doing so at home. Rightfully so, when your food is delivered to you three times a day on ~~silver~~ plastic platters. But I'm adjusting to being home. It's been a process and I am trying to steadily improve my rather erratic eating habits and curb my consumption of the nectar of the gods (it's not my fault that I'm a good Southern girl who enjoys the occasional gallon of sweet tea).

Other than that, life is good and quickly returning to normal. Here's to another round of good health bolstered by an extra dose of healthy eating.

Words to live by...

2010-05-17T13:27:00.000-05:00

I've posted this before, but it deserves repeating:

"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather, the opportunity to skid in sideways, chocolate in one hand, wine in the other, totally worn out and screaming 'WOO HOO!!! What a ride!'."

Flash Me Friday!

2010-05-14T23:05:00.001-05:00

Today is the first edition of Flash Me Friday!

This idea comes from Jen over at The Groettum Family blog. Flash Me Friday is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever.

You can't see MY condo from here (well, I can), but we have a total of four buildings. I'm in the second from the FAR end. These units were built in 1980. When I purchased my unit I embarked on a simple bathroom remodel (or two, hah!) which turned into an all out renovation. I LOVE every square inch of my condo and the whole thing has my mark.

It was a lot of work, time, and money but, in the end, very worth it. I learned a lot ... all of which I be able to reuse on my next home purchase / remodel.

I knew him when...

2010-05-11T18:33:00.003-05:00

he wasn't a famous a MyFoxAL-playing, Do-Dah-Day performing rock star:

My co-worker, Colin!

Cruise Pics, Part Deux

2010-04-12T13:13:00.004-05:00

A slideshow of pictures from Progreso:

Unfortunately, the pictures we took with the underwater camera didn't turn out (cheap underwater cameras and brackish water don't mix particularly well), but I've included them just to prove that I really did kayak (and for almost two hours!) ... needless to say, C. and I were exhausted by the time we decided to call it quits.

And Cozumel:

I'll have a few more pictures to share from our 'Fun Day(s) at Sea' in the next go round. Laters!

Cruise Pics

2010-04-06T16:29:00.001-05:00

More to come, but I wanted to start sharing some of my pictures from last week's adventure. I think the highlight of the trip was our Dolphin Swim & Ride shore excursion in Cozumel, Mexico.

Next Week...

2010-03-28T07:24:00.000-05:00

...I'll be quiet as a mouse. The first thought that comes into my family's mind is probably, "Brandi, quiet? NEVER." However, I will be taking a short break from the bloggy world this week to enjoy myself here:

We are headed down to New Orleans today (our port of call) and will be boarding the ship sometime tomorrow. Tuesday, it'll be a "fun day at sea" as we cruise down to Progreso, in the Yucatan Peninsula.

On Wednesday, we'll spend the day in Progreso and we'll be participating in a shore excursion, the Mangrove Kayak Adventure. We cruise overnight to our next stop, Cozumel.

I am super excited about our shore excursion in Cozumel -- the Dolphin Swim & Ride. Swimming with dolphins has definitely been on my bucket list and I finally have the chance to cross it off. Woot!

On Friday, it'll be another "fun day at sea" as we cruise back to New Orleans. Camera is packed and ready to go and I'll be armed with a ton of photos upon return.

I'll have limited internet & e-mail access while I'm on the ship (not sure exactly how much it costs yet), but if I'm able to upload any pictures, I'll try and give you a sneak peek of how much fun we are having.

See ya in about a week, peeps!

Eva

2010-03-27T16:12:00.008-05:00

There's another bright and shining star in the sky.

Breathe easy, Eva. You will be missed.

Edit: I wanted to include this video about Eva's Legacy, which was shared by Nathan, Tricia, and Gwyneth Rose from Confessions of a CF Husband.

Lauren's Dogs, 03/22/10

2010-03-23T13:02:00.000-05:00

Here's a cute picture that was just forwarded to me -- Buddha & Tanooki and their three new brothers and sisters (the "pug gang"). Trixie was, of course, too busy playing to sit still for a picture.

Comments

2010-03-20T11:44:00.000-05:00

If you haven't noticed, I'm using a new template on my blog. I didn't realize that my Disqus comment form no longer worked with the new XML, so I've been without comments for a few days.

I've reset the functionality on Blogspot to allow comments, so from this post forward you should be able to leave a comment on my posts.

My apologies! I love comments so please drop me a line (or three) if you have a minute.

Adventures in Sinusland

2010-03-19T11:46:00.003-05:00

Tuesday I had another ENT appointment, this time for a follow up to last week's Adventures.

I'd like to say things are back to "Perfect!" (ah, the good old days) ... but no, my sinuses continue to be uncooperative. Srsly, I'm beginning to wonder what I've done to piss off the sinus gods.

Never mind the fact that my frontal sinuses are itsy-bitsy-teensy-weensy small. That's fine. Never mind the fact that it's just a "CF thing." Whatever. The latest and greatest is that I now have a flap of something (I didn't catch what - scar tissue or cartilage) that continues to try and block the opening to my frontal sinuses. Dr. W. snipped away a couple of pieces in the hopes that it will keep the passages clear. I'm also to continue doing the Pulmicort flushes twice a day to (hopefully) decrease any inflammation.

The only good news is that I got a three week break until my next appointment. Truthfully, he wanted to see me in two weeks but as I will be sipping a cocktail somewhere in the Caribbean then, I told him it'd just have to wait.

a few of my (new) favorite things

2010-03-19T11:10:00.000-05:00

On Tuesday, I went shopping at Z Gallerie, in my never ending quest for new house decor. My mission was to buy new pillows for the guest bedroom. Check. And three new pictures for my bedroom. And a birthday gift. And a gift for myself.

I think I may need to register for the next meeting of Shoppers Anonymous.

But, if I do say, the new pictures in my bedroom look fabulous. Here's a peek at what I bought:

As Sheri says, "Fabulous!"

10 Ways To Fix A Bad Day Fast

2010-03-18T20:12:00.001-05:00

1. Put on your highest heels -- or take those suckers off!

2. Go into closet. Shut door. Scream. Feel a little silly for screaming in closet. Carry on.

3. Just give up and put your hair in a ponytail.

4. Throw caution to the wind and actually smile at a stranger.

5. Rub your own feet. Who needs a whipped boyfriend?

6. Kiss someone. Bonus points if they're over 83 or under three.

7. Have an orgasm, maybe two. (It's how he'd handle it, right?)

8. Catnap. Preferably with a cat (or a dog). [Ed. Note: Or three.]

9. Get off that weird fad diet immediately. It's wrecking your day ... and your metabolism!

10. Stop waiting for [whatever] to make you happy. You're in charge!

--By Kimberly Bonnell & Pamela Redmond Satran

Glamour List

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I rarely (if ever) buy magazines (sorry, Laura ... I know how disappointed you'd be!). I started glancing through this issue while I was waiting in line at Publix ("Price check on prune juice, Bob. Price check on prune juice.") and I was totally engrossed in checking out The 50 Most Glam Women of 2010.

On the last page I found this month's Glamour List. I highly recommend #2, #3, and #8. They work for me!!!

Éirinn go Brách!

2010-03-17T09:42:00.001-05:00

May the lilt of Irish laughter
Lighten every load,
May the mist of Irish magic
Shorten every road,

May you taste the sweetest pleasures,
That fortune ere bestowed,

And may all your friends remember
All the favors you are owed.

Sláinte!

Time Keeps on Slipping ...

2010-03-15T14:44:00.006-05:00

away from me, apparently. Aye! What a week ~ another crazy busy one, it seems. Every time I had good intentions on sitting down to post a blog update, something came up. However, I'm at "lunch" now, so I figured it's as good a time as any to get caught up.

ENT Update:

I had my sinus "surgery" in the office last Tuesday. Not an experience I care to repeat. The actual procedure (revising scar tissue and removing polyps from my frontal sinuses) wasn't terrible in and of itself because I was numb from my eyes to my teeth, but the process of a) getting numb from my eyes to my teeth and b) recovering AFTER being numb from my eyes to my teeth was not so thrilling.

(If you don't want to read all the juicy details, skip the next few paragraphs)

After getting settled in the ~~chair of torture~~ exam chair, things got underway by spraying lidocaine up my nose. Next, a squirt of pentacaine in both nares. Step 3 involved taking a piece of cotton drenched in pentacaine and shoving it way, way, way up my left nostril (up to the frontal sinuses). After marinating for about five minutes, the fun really started. If you call fun having a 3-inch needle filled with lidocaine poked up your nose and said lidocaine being squirted into your frontal nasal cavities.

Have you ever noticed the similarity between all things ENT and medieval torture devices? I have.

To give my ENT full credit, my sinuses were completely numb. There was no "pain" involved while he was digging around in my frontal sinuses. I could feel pressure and hear the scrape, scrape, scraping sounds of instruments inside my head. It was definitely a mind game. As long as I could keep my mental hamster wheel spinning and not focus on the aforementioned, I could keep myself from crawling over the back of the chair.

The total time (from numb to done) was about 45 minutes. Not that I relish the thought of ever doing it again, but for future reference, it is possible.

And although I could have driven myself home, I was glad that my dad (thanks, Dad!) picked me up and dropped me off. Once home, especially after the -Caine sisters started wearing off, my head was ready to implode. Thanks be to Tylenol, my bed, and some kitteh love, I survived the rest of the day.

I did return to work on Wednesday (although I can't honestly say I accomplished much) and was pretty much back to normal on Thursday with only a lingering headache and some sinus pain.

Tomorrow (Tuesday) I go back for my one week post-op exam. Stay tuned for more.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

On Wednesday night I enjoyed my weekly dinner with the fam. We changed things up this week by having Mexican and it was fabulous!

Thursday night was our first CFF Young Professionals meeting. I think (I hope!) this is going to be a very interesting group to be involved in. Although this week's gathering (dinner and drinks) was more of a "meet and greet" rather than an actual meeting, I think the group has the potential to do some great things. At our first meeting we had two adult CF patients (myself and a 39 year old fibro), two CF spouses, one CF aunt, and several other people who know or have known somebody with CF and are inspired to help. I know not everybody could be at our first meeting, so I'm looking forward to seeing who attends the next meeting.

This weekend went by FAR to fast (don't they always?). My super amazing hair stylist called me and I was able to get my hair done ... no major changes this time, although I did change the light silvery-blue from before to an indigo blue. I was planning on going next Saturday, but it was nice to be able to get it done early.

I also had an appointment at Best Buy to get my new iPod adapter installed in my car. This is an after market piece that is hardwired to play your iPod through the radio without using an FM transmitter. LOVE. Even if the installation took twice as long as it should have (a very long 3.5 hours).

But it was worth it ... no more heinous FM transmitter!!! No lie, I have been through at least five FM transmitters and not a single one would play my iPod without horrible static or interference. The nice thing about this particular transmitter is that it is completely transferable - if (or rather, when) I sell my car, I can have it removed and installed in my new vehicle.

On Saturday night my family and I celebrated our birthday extravaganza (this celebration was for Alex [22], myself [32], Cheryl [52], and my grandmother [29]) at Bonefish Grill. Excellent food. Excellent fun. As always.

And last, but certainly not least, on Sunday we went to the season finale of the Birmingham Broadway Series to see The Wizard of Oz.

Fantastic performance! I can't wait to find out what will be here for the 2010 - 2011 season. In July, you'll find me at the fabulous Fox Theatre in Atlanta enjoying this:

Obsessed? It's only my eighth (ninth?) show. I'm far from obsessed.

And in November (hopefully), you will find me under the lights of Broadway:

and

What I'm Listening To...

2010-03-12T06:52:00.002-06:00

Neglectful Nelly

2010-03-07T10:51:00.001-06:00

...is what I've been lately. I'm sorry, Bloggy-boo.

In actuality, there has been a lot of excitement, a lot of headaches, and a LOT of frustration. I don't want to jinx myself, so I'm keeping quiet about the excitement, for now.

I'm not really at liberty (at least not yet) to talk about the headaches and frustration. Suffice it to say that life at Carmel has been one hell of a roller coaster ride in the last month. Some days I'm happy to be on the Board and some days I would rather be totally oblivious.

Yesterday was Alex's, 22nd birthday! He, Cheryl and I had lunch together at P.F. Chang's and went to see Alice in Wonderland 3D. It was a good movie, although it was very loosely based on Lewis Carroll's original story. I'm sure Alex could give you a lengthy discourse on the quality of the CGI, but for the average person, I thought it was great.

March = Birthday Month = $$$. After Alex, my grandmother, myself, my mom, and both of my aunts have birthdays this month. My cousin and his wife, Christine, also celebrate their third anniversary on the 12th.

Work is great. Busy, busy, busy. But great.

Lah! That's about it for now. I'll have ENT updates later this week.

Home Sweet Home

2010-03-01T13:14:00.000-06:00

I wanted to share a few new pictures of Trixie, Buddha, and Tanooki relaxing and playing at their new home --

Buddha

Tanooki

Trixie

I received the following e-mail from their new mom, Diane, today --

"Trixie is beginning to put on weight now that I have her on a raw high protein diet. She loves to play with mid size dogs. She is a sweetheart as are the pugs. They are all getting fed well, lots of treats and lots of love."

Family pics of the "the gang" coming soon!!!

The verdict? Lauren's fur babies look comfy, cozy, and all settled in. Which makes me a very happy Brandi. Isn't life grand?

ENT Update

2010-02-26T14:20:00.003-06:00

Yesterday I went back to UAB ... on the schedule, a CT scan and another appointment with ENT.

The verdict? CT Scan was a hot mess. It's about what Dr. W. expected ... scar tissue and polyps. I'm going to start the Pulmicort flushes and he is going to try and revise some of the scar tissue in the office on March 9th. Not that I'm looking forward to having him dig around in my head for a few hours (it will be numbed with Pentacaine, which is like a super-duper Lidocaine), but it's better than going back to the OR. Anesthesia does not make the lungs happy.

I did not sign up for this.

In other news, I talked to C.Fred about starting Cayston. She said there is still a study ongoing at UAB that I can possibly participate in. Meaning that I won't have to wait for the actual release (even though that is only about two weeks away). Yay! I am more than willing to try ANYTHING that may keep me away from Club Med.

Still trying to appeal BCBS's denial of being genotyped. I did find out that my company has no specific exclusions for genotyping, so it is simply a matter of convincing the insurance company that being genotyped is important for all CF patients ... it's value is not just in diagnostic or pre-pregnancy / newborn screening.

But, hey, if all I need to do is tell them that I'm thinking about getting knocked up, then it might be worth it. Just jokes.

Feb 22, 2010: FDA Approves Release of Cayston(R)

2010-02-23T09:53:00.000-06:00

U.S. Food and Drug Administration Approves Cayston(R) (Aztreonam for Inhalation Solution) for the Improvement of Respiratory Symptoms in Cystic Fibrosis Patients with Pseudomonas Aeruginosa.

FOSTER CITY, Calif., Feb 22, 2010 (BUSINESS WIRE) -- Gilead Sciences, Inc. (Nasdaq:GILD) today announced that the U.S. Food and Drug Administration (FDA) has granted marketing approval for Cayston(R)(aztreonam for inhalation solution) as a treatment to improve respiratory symptoms in cystic fibrosis (CF) patients with Pseudomonas aeruginosa (P. aeruginosa). Read more.

This is the first new inhaled therapy approved for Cystic Fibrosis patients in more than 10 years! FTW!!!

The Good, The Bad, and The Ugly

2010-02-19T15:22:00.000-06:00

I was off work yesterday, nevertheless, it was a busy day. From 7:30 AM to 2:30 PM, my day was full of doctors, waiting, tests, clinic, waiting, labs, and more waiting.

The Good
CF Clinic was grand! After dashing from St. Vincent's over to UAB, I leisurely strolled (editor's note: ran my ass off) trying to get to the 4th floor in time for my pulmonary function tests. I made it with two minutes to spare - checking in at 9:28 AM for my 9:30 AM appointment.

The Stats

FEV1 = 1.58 liters (55%) Woot!

O2 Saturation: 91% on room air

With vital signs and PFT's out of the way, I sat down to wait. Luckily, I didn't have to wait long and I enjoyed a few minutes catching up with the two Ashley's. A few minutes after 10 AM, I got called back to see the team.

First up was Karen, our new nurse practitioner. I met Karen when I was in the hospital in January and I must say, I was very impressed. She has not worked with CF patients in the past, but she is eager to learn and wants to get to know each patient individually. This is important in any case, but particularly when you are dealing with a disease like CF that affects each person differently.

Next up to bat was Dr. Y, one of the best doctors in our group (and no, I'm not just saying that because I know he reads my blog) ... he really is that good. After all, he listened to me babble on and on about the incessant itching that I've been fighting since last Friday.

By incessant I mean non-stop, never-ending, all over my body itching. For reasons unknown. I've ruled out all the obvious causes - dry skin (I've been drenching myself in Aveeno twice a day); changes in diet; new medicines; change in detergents; fleas (the kittehs are inside only so this was unlikely, but worth looking into). I've re-washed all my bedding, bathed in oatmeal, taken Benadryl, and finally - out of sheer desperation - took 20 mg of Prednisone on Thursday night. I think Dr. Y realized I was serious when I copped to taking the Pred - he knows how I detest that "evil little miracle."

After ruling out any likely reactions to my medicines, the next step is to see the Dermatologist. We tried to setup an appointment for yesterday afternoon, but the earliest available was next Thursday. Dr. Y took pity on me and prescribed me something stronger than the Benadryl to try and keep the itching at bay until then. I took my first dose last night and was able to make it through the night without scratching my arm or leg off. Sitting here ~~typing this post~~ working, the itching is itching to make a comeback, but it's tolerable.

The next topic of conversation was genotyping. I've been genotyped before (DeltaF508 + unknown), but that was when they only tested for 32 mutations, not the 1000+ that are tested for today.

Dr. Carla submitted a pre-authorization request to BCBS while I was in the hospital, but the claim was denied. The response that I received from the Medical Review Board stated that "the patient already has a diagnosis of Cystic Fibrosis" (really? you're kidding!). We are going to file an appeal - two new treatments that are currently undergoing testing (VX809 and VX770) are genotype specific. While I don't think I have the genotype necessary to be part of these studies, it will be helpful to know.

Last (but certainly not least) was the subject of my port. When I was in the hospital last month, I had developed cellulitis in the area around my port. We decided to take a "wait and see" approach hoping that with the number of abx that I was on and with some "alone time" after I got de-accessed that it would heal on its own. Happy to report that it did! The infection, inflammation, and tenderness are all completely gone. We were able to access my port and flush with zero problems and I had a beautiful, bright red blood return.

As you can tell, this appointment was a little more involved than the usual "How're you doing?" - "I'm fine." - "See ya in a month." conversation that I usually try to have. Because of that, I was running a little late for my ENT appointment, which was scheduled at 11:15 AM.

The Bad
After finishing up in clinic, I high-tailed it upstairs to ENT clinic and checked in around 11:30 AM.

Where I proceeded to wait. And wait. And wait.

About 12:15 PM, the PCT called me back, took my vitals and set me up in Room 2. Where I waited some more. Finally around 12:30 PM, the nurse came in. With a look of chagrin, she apologized profusely for the long wait. "No big deal," I said, "What happened?" "Well, umm ... you see ... mmmm, we kind of forgot you." Wow. OK.

Apparently word had not traveled from the front desk to the nurses that I arrived at 11:30 AM. Dr. W. thought he'd seen everybody and went to lunch around noon. She asked if I could wait til he returned at 1 PM and promised that I'd be the first patient he saw. Even though I was mildly annoyed at being "forgotten," I know I'm not a VIP. And I needed to have some lab work done, so I decided it was worth the wait.

Word to the wise - don't try to get labs drawn at Kirklin Clinic on your lunch hour. Apparently, everybody and their brother had the same great idea. I waited for about 25 minutes and called it quits. I hopped on the next elevator up and headed back to ENT. Fortunately, they didn't forget me this time. =)

The Ugly
To be perfectly honest, ENT is never my favorite place to be. Nobody in their right mind would enjoy having a 12-inch scope shoved up their nose. I'd rather be strapped to a spinning wheel and have daggers thrown at me. Fortunately, there's enough eye candy in the ENT office that the experience isn't a complete waste of time.

Even though my sinuses have been a little stuffy this past week, I honestly expected to hear the same pronouncement as last time -- "PERFECT." But alas, it didn't happen quite the way I planned it.

My maxillary sinuses (the ones across your cheeks) still look great. I flush my sinuses obsessively and it is well worth the time and effort. He did clean out an inconsequential bit of gunk, but nothing to write home about.

And then he got to my frontal sinuses (the ones above your eyes). Not so great. Polyps and scar tissue that weren't present last time have decided to make themselves known. GRRR. It's frustrating because there is nothing I can do about it, it's "just a CF thing."

I'm going next week to have a repeat CT scan and then meeting with Dr. W. to discuss options. I think the plan is to try and treat it with steroids (Pulmicort). From what I understand, treating sinuses with Pulmicort is not an "approved" therapy (yet), so it has to be pre-authorized through Blue Cross before he can write me a script.

Just like that, my run of "perfect" sinuses was at an end. With nothing more to be done (at least for now), my sinuses and I decided to head home after one more stop at the labs. The crowd had finally thinned out and I was in and out in about five minutes.

Whew! What a day. I was glad to see it end (well, at least that part of it). I was looking forward to the rest of my evening with family, friends and some excellent food.

And they're off!

2010-02-17T14:39:00.001-06:00

Let me start off by saying:

I'm not really an emotional person,
I'm not one to cry (unless I am really pissed off about something),

but, you are looking at two pictures that brought a tear (or two!) to my eyes last night. That's Buddha and Trixie, on their way to Colorado. Tanooki is along for the ride, but he was being camera shy.

It absolutely makes my day to know that Lauren's fur babies (who meant the world to her) are going to be home with their new family soon.

More pics to follow!

Join the UAB Adult CF Team for Great Strides '10!

2010-02-12T15:17:00.003-06:00

Please consider joining the UAB Adult CF Team for the annual Great Strides event in Birmingham, AL on May 22, 2010. Our focus for this year is to remind us that "Every Breath Is A Gift." GREAT STRIDES is the CF Foundation’s biggest fundraiser and provides us an opportunity to help make a difference in the lives of those with Cystic Fibrosis.

Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum of this life-saving research. As you may know, the CF Foundation receives no government funding. Therefore, the funds that we raise go directly to helping us find a cure.

Last year the UAB Adult CF Team raised over $6,300.

This year, I would love for you to walk with me and the other members of the UAB Adult CF Team, with a goal of raising at least $5,000 by May 22, 2010 in Birmingham, AL.

I know this year’s goal can be met with your help! Remember, every dollar that you raise is used efficiently and effectively. Each contribution is tax-deductible and goes directly toward supporting research and specialized care that improves the quality of life for those with CF.

If you would like to join the team, log on to my website. If you have any problems registering, please let me know and I will be happy to process your registration manually. You can reach me via e-mail at bankrgrl -at- gmail -dot- com. Once you are registered, the next step is the easiest - get out there and fund raise, fund raise, fund raise!

I look forward to seeing all of you who participated last year and hopefully a few new faces. Please feel free to share this e-mail with others. Help this be an outstanding year ~ let's start taking GREAT STRIDES to cure CF.

Eva

2010-02-12T08:24:00.003-06:00

Please keep Eva and her family in your thoughts and prayers today. They need it now, more than ever.

The video below shares Eva's thoughts about what is to come. It is both dark and light, and shares some very serious content.

I have been quietly following Eva's blog for awhile now. Eva was diagnosed with chronic rejection following her double lung transplant two years ago. Through it all, she has shown a zest for life that not many people know, an appreciation for the beauty that surrounds her, and a fiery spirit (which goes well with her fiery hair).

Sadly, Eva is not expected to live much longer. She was re-listed for a second transplant, but the lungs have not come in time. As Eva reminds us,

the greatest thing you'll ever learn
is just to love
and be loved in return

There is an amazing documentary, 65_RedRoses, that shares Eva's personal journey and takes an unflinching look into Eva's life as she fought to beat the odds against Cystic Fibrosis and lung transplant. The film received several awards at the 2009 Vancouver International Film Festival.

I have not had the opportunity to see the film in its final cut, but just watching the short clips posted online reveals the beautiful, quirky, funny and inspiring person known to the world as Eva Markvoort.

Breathe easy, Eva.

Lauren's Dogs, 02/04/10

2010-02-11T12:19:00.003-06:00

Buddha, Tanooki, and Trixie have a home! TOGETHER!

I last spoke with their new adoptive mom last Thursday, and plans were in motion to transport all three to their new home in Colorado. They'll have three new friends (all pugs) to keep them entertained.

In other news, Tanooki is in much better health. They were able to locate an infection and treat it appropriately. He is doing wonderful now ~ back in good spirits and happy to be with his sisters. The best news is that there were no neurological issues and NO brain tumor.

I can't begin to give enough thanks to all of the kind e-mails and phone calls that I received when I was so desperate to find a home for these babies. I have not been able to thank each of you individually, but I please know that I am beyond grateful for all of the good advice, information, and well wishes.

I've asked the new family to send me some pics once they are all settled in together. I have no doubt that Lauren knows her fur babies will be well taken care of.

New Year, New Look

2010-02-08T21:46:00.006-06:00

This weekend it was time to make a change. Lucky for me, my hairstylist-to-the-stars, Shawn, was available on Saturday and was ready to rock out a new look for me.

From this ever-so-boring dark auburn (with my pink and purple highlights being twelve weeks faded, I elected to do an all over red) that I've been sporting since the holidays:

I decided to make a leap of faith and try a color that I've never done before. Coming from me, that's saying a lot. Six hours and at least five processes later, we were done:

(highlighted by the natural light coming in from the picture window)
(you can see a hint of the blue peek-a-boo highlights on the right)

(Same look, but with indoor lighting. I was trying to show the purple highlights.)

I love, love, love it! Just to make it a fun, I added some purple and blue peek-a-boo highlights. Amazingly enough, if I turn my head just right, you can still see the pink.

The Goldwell color line and Elumen products are amazing, but be forewarned, you better love your color - it will last forever and a day.

Sneak Peek

2010-02-06T23:00:00.002-06:00

Thanks, Shawn. You rock ... as always.

Adopt-A-Pet

2010-02-02T13:46:00.005-06:00

Adopt-a-Pet.com is the world's largest non-profit pet adoption website. Essentially, they are like an ad agency for shelters and shelter pets. Sadly, there are 4 million healthy adoptable companion animals killed in shelters each year due to overcrowding. The goal of Adopt-A-Pet is to to relieve that problem and put pets from shelters in the homes of pet seekers all over the country.

The website makes it easy for anyone with an internet connection to find profiles and pictures of adoptable animals by location, breed, gender, age, size, and color. Over 8,000 shelters posts pets displaying over 125,000 pets available for adoption at any given time. They also help volunteers connect with shelters, and currently host over thousands of people listed in our volunteer database for shelters.

Please stop by and read their blog! The moderators at Adopt-a-Pet work hard to create over 100 posts a year about everything from pet care tips to good news surrounding pet adoption.

All three of my kitties are rescues - Issy and Beau lived on the local Marine base in Bessemer, AL and Hallow was found trying to cross the road outside Winonah School of Cosmetology. Of course, all three have stolen my heart (and made themselves quite comfortable in my house), but it reminds me of the importance of Adopt-a-Pet's mission.

Please spay or neuter your animals! Too much of a good thing is not a good thing ... shelters are overflowing.

Lauren's Dogs, 02/02/10

2010-02-02T12:39:00.000-06:00

I apologize for the lack of information. I was not able to be as "in the loop" regarding Lauren's dogs while I was in the hospital as I would have liked. I did exchange a few e-mails with a family in Colorado that may be interested in adopting the three dogs (together), but at the moment, everything is on hold.

I talked with Angela @ the Greater Huntsville Humane Society on January 21 and heard that all three dogs continue to do well together, but that Tanooki had to be taken to the vet for emergent care the other day.

From my understanding they are concerned because he was exhibiting symptoms ("alligator rolls") the other morning. When they took him to the vet, they could not find anything immediate, but after shaving his neck, there was indication of old scarring, so they thought he may have had some problems in the past.

I believe there was some concern about a possible brain tumor or other neurological problem. Angela explained that, for now, Tanooki would be going to go to one of the major veterinary schools (University of Tennessee) for further testing on Monday, February 1, 2010.

(Bump)

The Greater Huntsville Humane Society continues to accept directed donations on behalf of these three. If you can support Lauren's dogs, please donate to the Greater Huntsville Humane Society.

You can mail a check to:

GHHS
2012 Johnson Road
Huntsville, AL 35805

Please include a note with your check that the funds are for the care of Buddha, Tanooki, and Trixie.

You can also donate online. Again, please specify that the gift is in honor of Buddha, Tanooki and Trixie.

(Bump)

I am also continuing to raise money on behalf of Buddha, Tanooki, and Trixie, in Lauren's memory. All monies will be used for the care (boarding, food, vetting expenses) of Lauren's fur babies. At this time, we have decided that any remaining monies will be split 50/50 between the Cystic Fibrosis Foundation and the ASPCA (Lauren's favorite charity). I am using ChipIn (recommended by one of the many rescue groups that I have been in touch with) to accept online donations.

Alternatively, you can mail a donation. A bank account 'Lauren Sturdivant Memorial' has been established at Compass Bank in Birmingham, AL. This is not a tax-deductible donation as I do not have non-profit status at this time, but I will mail you a receipt for accounting purposes. If you'd like to mail a donation, please contact me via e-mail.

Great Strides 2010 - Let's Get This Party Started!

2010-01-29T01:07:00.004-06:00

Dear Family and Friends,

It is that time of year again! Please consider joining us for the annual Great Strides event in Birmingham, AL. Our focus for this year is to help remind us all that "Every Breath Is A Gift."

GREAT STRIDES is the CF Foundation’s biggest fundraiser and provides us an opportunity to help make a difference in the lives of those with Cystic Fibrosis.

Cystic Fibrosis is a genetic, life-threatening disease that affects approximately 30,000 children and adults in the United States. According to the CF Foundation’s National Patient Registry, the median age of survival for a person with CF is now approaching 37 years. Sadly though, too many young children die before having the opportunity to live to this "ripe old age."

Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum of this life-saving research. With the knowledge that the past few years have been a struggle for many Americans, please accept this as my plea to you to help us raise money for a cure. Every dollar and cent count, no matter the amount. As you may know, the CF Foundation receives no government funding. Therefore, the funds that you donate go directly to helping us find a cure.

I know, personally, what it is like to live with this devastating disease. After spending the better part of 2009 (86 days) and just completing my first 21 day stay of 2010 in the hospital, I find myself energized and ready to get the word out about "SixtyFive Roses." While I am, fortunately, strong enough to endure the many necessary treatments that CF patients need daily to survive, I also face the reality that my lungs won't work forever, and I may, one day, need a lung transplant. I take comfort in the fact that I am currently seen by the UAB Adult CF Team in Birmingham, AL. In addition to having some of the best doctors and nurses available, there is an amazing amount of research being done right here on our own doorstep.

GREAT STRIDES is the Cystic Fibrosis (CF) Foundation’s largest and most successful national fund-raising event. Last year the UAB Adult CF Team raised over $6,300. This year, I will be walking with the other members of the UAB Adult CF Team, with a goal of raising at least $5,000 by May 22, 2010 in Birmingham, AL.

With that in mind, please save the date of May 22, 2010 in your calendar! Plan on joining the members of the UAB Adult CF Team for food, fun, and music at Veteran's Park in Birmingham (Hoover), AL. I know this year’s goal can be met with your help! You will feel confident in knowing that your generous gift is used efficiently and effectively. Your tax-deductible contribution goes directly toward supporting research and specialized care that improves the quality of life for those with CF.

If you would like to participate in the actual walk, you can log on to my Great Strides website. You can also click through the link displayed on my blog. If you have any problems registering online, please let me know and I will be happy to process your registration manually. You can reach me via e-mail at bankrgrl -at- gmail -dot- com. Once you are registered, the next step is the easiest - get out there and fund raise, fund raise, fund raise!

Donations are accepted online, through a secure server, provided by the Cystic Fibrosis Foundation. Just click the "Click to Donate" button on this page to make a donation that will be credited to our team. Any amount you can donate is greatly appreciated! Alternately, you can also mail a check made payable to the Cystic Fibrosis Foundation or to the UAB Adult CF Team.

I look forward to seeing all of you who participated last year and hopefully a few new faces. Please help this be an outstanding year ~ let's start taking GREAT STRIDES to cure CF.

With many thanks!

Of Ports & Blood Cultures

2010-01-27T15:12:00.004-06:00

Update, 01/28/10:

I have cellulitis - in layman's terms that is an infection or inflammation around my port.

No definite idea on why this happened - it could be attributed to any number of reasons. One theory is that because my immune system is down due to the prednisone, it may be a contributing factor.

So, for now, we are just going to wait and see. Hopefully the infection clears up on its own (I'm on so many antibiotics that it should). Since I am so close to being done with this round of antibiotics, I elected not to re-access but did change the dressings and clean the site.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Doing blood cultures on my port.

It's been bothering me since last Friday but I thought it was because the nurse had to manipulate it so much (it also took her 3 sticks to get it reaccessed). There is some bruising, but my whole side is tender to the touch & the dressing had a lovely yellow tinge to it. Have been blaming the soreness / tenderness on Prednisone withdrawal (been dealing with that too), but that's better & my port is still hurting.

GREAT.

And the verdict is...

2010-01-26T15:49:00.004-06:00

FRIDAY!

Did PFTs this morning and saw a definite improvement in #'s. Back to normal (or "baseline") and actually I think a little bit higher. As much as I hate to say it, my lungs like the prednisone. I may hate the side effects (in case you haven't figured it out yet), but it definitely does work wonders on the airbags.

I also promised one of my doctors that I'd give him a shout out on my blog. During rounds last night we laughed at the fact that he hardly even needs to come see me, he just has to read my blog to be in the know.

So, without furher adieu ...

"Hi, Dr. Y.!" [waving]

In other news, Miss Hallow Kitty is going to the vet on Friday morning. Even though she's just four months, she's decided to flaunt her womanly wiles already. Cheryl (or Alex) will have to drop her off at the vet on Friday morning and I'll be able to pick her up on Saturday morning. Then she will have the rest of the weekend to recover at my house by herself and I'll pick up the boys and bring them home on Sunday.

Hospital, Day 17.5

2010-01-25T14:43:00.004-06:00

Time keeps on slippin', slippin', slippin'
Into the future
Time keeps on slippin', slippin', slippin'
Into the future

I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
I want to fly like an eagle
Till I'm free..

Sorry, I was channeling my inner Steve Miller Band. Yes, I'd really like to go home right now, but that doesn't appear to be in the cards. My goal is to be out of here by Friday (3 weeks) and back to work on Monday. Back to REAL life and not this-so-called-life that I've been partaking of.

My Prednisone dose has been cut back to 20 mg/day, which means the chances of me biting your head off for looking funny isn't quite as likely, but I do find that EVERY. little. THING. is frustrating, especially when it isn't done right the first time.

The 'roids still have me hyped up ... I've exhibited a few feats of superhuman strength (a la Mighty Mouse) ... for example, while trying to change out the tubing from one nebulizer to the other, I was pulling on the plastic tubing with all my strength and I ended up breaking the nebulizer into two pieces. No, I'm not kidding. If I hadn't of been so irritated about it, I would have taken a picture. Instead I just threw the nebulizer against the wall. =)

I've survived the last few days by catching "cat naps" here and there, but I don't remember the last time I had a entire night of what could actually be called sleep.

In other news, my drug levels are still not right. The lower dose of Vancomycin (1250 mg) caused my trough level to drop to 10.6, which means the medicine wasn't working as effectively as it should be. The pharmacist has now changed my dose to 1500 mgs / q 12 hours. Hopefully (fingers crossed) that will be the magic number. I am guessing they will re-do my levels after about four doses to see where I'm at. Who knows?

Off to do PFTs tomorrow.

I'm now taking suggestions on what movies to watch to kill time. Next up is the re-release of Friday the 13th (2009). After that, I'll be relying on my Netflix instant queue for entertainment.

Lah!

Hospital, Day 12 (No new news...)

2010-01-21T00:48:00.002-06:00

is ~~good news~~. Right?

WRONG! At twelve days into this visit, I was hoping to see some improvement across the board. Instead I've been plagued by shortness of breath and a low O2 saturation (%SpO2) for the past several days.

My body is used to dealing with my O2 levels hanging out in the low 90's on room air. In all honesty, I don't really start to notice a difference in my breathing until I start hitting #'s in the mid-80's. Well, for the past few days I've been monitoring my O2 saturation levels a bit more closely because I would find myself out of breath with any form of exertion, and in some cases, even while talking.

To my chagrin, I found out that my #'s were staying in the 80's most of the time, barely reading in the low 90's, even with supplemental O2. Since that's kind of out of the ordinary for me, I ever so nicely asked my doc to figure out what was going on. (Actually, given my temperament of late, it would probably be more accurate to say I asked "Dr. Y., what the hell is going on?"

So today, Day 12, I went and had another CXR (chest x-ray). According to my nurse practitioner, I essentially had shown no improvement on my x-ray over the past two weeks and that I am still showing a lot of "junk in my trunk."

Also, it seems as if my body is not enjoying the lovely doses of Vancomycin that I've been receiving. With most antibiotics, doctors will typically monitor the peak and trough of the medicine in your bloodstream. My first trough level came back high (27.9, I believe) and it was thought that it may have been a fluke, or a bad sample. Either way, we skipped the next dose to allow my blood serum levels to return to normal. Today, upon re-check, my trough level was 31. With two high trough readings and a slightly out-of-sorts BUN (blood-urea-nitrogen level) the Drs. decided to change my dosing, by lowering the amount of Vancomycin that I receive (2 grams --> 1250 mg) and changing the timing (q 8 --> q 12 hrs).

Along with that, the evil little drug, Prednisone, decided to make a suprise appearance in my medicine cup this afternoon. I am NONE too happy about starting Prednisone as I hate. Hate. HATE. the way it makes me feel. But I'll survive.

Fair warning to all of my friends, family, co-workers, and assorted blog readers, I am laying all blame for any antics that ensue over the next few weeks on the drugs. I will not be able to accept responsibility for being very un-Brandi like, at least until I kick the Prednisone.

Without much else to report on, I want to leave you with an invite to Cystic Life, a great social networking service for CF patients by CF patients that has been in the works for a while now. Cystic Life was the brainchild of Ronnie (of RunSickBoyRun fame). It's where all the *cool kids* hang out. =)

Hospital Stays By The Numbers (2009), Part IV

2010-01-15T13:46:00.004-06:00

Hospital Round 4 / September 28, 2009 to October 19, 2009:

This was my most recent hospital visit (until now) and all that I can recall is that it was completely uneventful. I'm not sure if that's a good thing or a bad thing! I did discover that UAB finally came to terms with their internet services and I could now Facebook or blog as much (or as little) as I wanted.

My goal was to make sure I was healthy for Halloween, even if I did have to miss the Kings of Leon concert. My timing was perfect ~ I was able to dress up, have fun, and party like a rock star on All Hallow's Eve.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Total # of Days Admitted: 21 Days

Total Amount Billed: $104,289.84

Average Cost Per Day: $4966.18

Hospital Stays By The Numbers (2009), Part the III

2010-01-15T13:34:00.004-06:00

Hospital Round 3 / July 28, 2009 to August 18, 2009:
Other than a diagnosis of pneumonia, this trip was fairly par for the course. What I hated the most was the fact that Katey and I were due to fly out to San Francisco the next day to go to the NACFA Conference. I did get to make up for my missed vacation by going on a two day trip to Vegas.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Total # of Days Admitted: 21 Days

Total Amount Billed: $101,227.57

Average Cost Per Day: $4820.36

Hospital Stays By The Numbers (2009), Part II

2010-01-15T13:24:00.005-06:00

Hospital Round 2 / May 27 - June 10, 2009:

I was hospitalized from May 27, 2009 to June 10, 2009 for a pretty uneventful hospital visit. I was able to be discharged in 14 days, which was FAN-F'N-TASTIC, since I honestly can't remember the last time I've done less than 21 days. I guess this visit could be packaged up with a pretty bow and called a "tune-up."

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Total # of Days Admitted: 14 Days

Total Amount Billed: $77,564.02

Average Cost Per Day: $5540.29

Again, my only out of pocket expense for my hospital stay was $250.

Hospital Stays: By The Numbers (2009), Part I

2010-01-15T10:36:00.017-06:00

Hospital Round 1 / February 11 - March 13, 2009:

I was hospitalized from February 11, 2009 through March 13, 2009, to be treated for a Cystic Fibrosis exacerbation. During this time, I had major sinus surgery which kept me under lock and key the entire time.

Welcome to "Club Med":

Unfortunately, our accommodations aren't quite so nice:

I was trying to come up with some intelligent reason for writing this post, but I couldn't. I am bored, and looking for ways to pass the time. I decided to figure out how much work I missed last year and also how many day I spent in the hospital. Then I decided to compare the costs of each visit.

Below is a partial list of the medicines and treatments I receive when I am in "Club ~~Med~~ Dread."

Private Room (per day) - $1210.00
Oxygen Use (per day) - $320.00
Ultrase MT20 (100 capsules) - $484.40
Meropenem Injection (2 Gm Vial) - $247.50
Vancomycin Injection (1000 grams) - $17.44
Ceftazidime Injection (2 gram Vial) - $73.22 / per dose
Pulmozyme - $221.22 per dose
Albuterol - $14.45 per dose
Colistimethate Injection (75 mg) - $72.27 / per dose
Budesonide (Pulmicort)
Neb Bronchdil TX SubSeq - $95.00 / per nebulizer
- At UAB, this means your Respiratory Therapist sticks his head in your room, and leaves your evening aerosol / nebulized meds.
Chest PT CF Pateient Subsequent - $144.00 / per session (usually TID)
Zolpidem Tablet (Ambien) / $8.72 each
Tramadol Tablet 50 mg / $7.26 each
Benzonatate Perles (100 mg) / $30.00 each
Aquadeks Soft Gel Tabs (Vitamins) - $15.44 / per dose
Nexium (2x/day) - $14.36 /per pill
Montelukast Tab 10MG (Singulair) - $25.38 / per pill
Ferrous SO4 Tab 300 MG (Iron) - $14.11 / per pill
Guaifenesin LA Tablet 600 mg - $8.75 / per pill
Azithromycin Tablet 250mg (x2) = $36.40
Acetaminophen Tablet 325 mg - $0.08 / per pill Yes, folks, that is OTC Tylenol

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Total # of Days Admitted: 30 Days

Total Amount Billed: $314,611.38

Average Cost per Day: $10,487.05

My out of pocket expense is $250 for each visit, but I work hard to keep my benefits with BBVA Compass and our heath insurance provider, Blue Cross / Blue Shield.

Hospital, Day 7

2010-01-15T09:41:00.006-06:00

Nothing of much excitement to report this time around. I settled in on Friday and got a CXR (chest x-ray), got my port accessed, and took some time to settle in. The Pulmonary Function Clinic was packed on Friday (they had several bronchoscopys waiting to be done), so I was not able to do my PFTs on admission.

Spiromety (meaning the measuring of breath) is the most common of the Pulmonary Function Tests (PFTs), measuring lung function, specifically the measurement of the amount (volume) and/or speed (flow) of air that can be inhaled and exhaled.

The two major #'s that my Dr. look at are my FVC and FEV1.

On Monday, January 11:
Forced Vital Capacity (FVC) is the volume of air that can be forcibly be blown out afer full inspiration, measured in litres. My FVC was 41% when I was admitted last Friday, January 8th.

Forced Expiratory Volume in 1 Second (FEV1) is the maximum volume of air that can forcibly blow out in the first second during the FVC maneuver, measured in liters. My FEV1 was 36% on admission.

Along with FVC, FEV1 is considered one of the primary indicators of lung function.

After a week of IV meds (the same cocktail that I had last time) my #'s have improved slightly to 49 / 46). Given that I had just finished my ventolin aerosol, it might not be the most accurate representation, but I'll take whatever I can get.

After a run-in with a bitch (she who shall not be named) nurse the other day, I was a little irritated. Little John, was my nurse today and I felt bad for taking my frustrations from the day before out on him. Because I have so many allergies and I have to be pre-medicated to almost every antibiotic I take, if my schedule and pre-meds are a bit out of wonk it puts a kink in the system. And I'm the one that as to suffer from that kink. So, I *think* things are back to order at this point.

Tomorrow = Day Eight! (I'm not sure how long I will be staying for sure, but either way you to do the math, I'm either 1/2 way there or a 1/3 of the way. Calgon, take me away!!!

Breathe

2010-01-10T13:21:00.002-06:00

This is an amazing video, available for download at CFVoice.com. Check it out!

Hospital, Day 2

2010-01-10T12:19:00.015-06:00

It's official. I'm back in "Club Med" (or "Club Dread," depending on your perspective). After 80 days of freedom, it was time for a tune-up. I accomplished my goal of staying out of the hospital through the end of the year (a challenge that I had with my boss) and even made it almost a week longer.

(80 days?!? I can't believe I made it that long. I should get a gold star.)

In all, I don't feel terrible. I certainly don't feel great and I know it was time to come in, but there have been times that I've been here that I have felt much, much worse. I would love for this to be a 14 day visit rather than my normal 21, but I'm not going to jinx myself by making plans for a 14 day stay. Not yet, at least.

They started me on the same schedule of meds, pending the results of my sputum culture. I've been very tight and most of my congestion seems to be confined to my upper lobes (on both sides). My bases actually sound fairly clear, which is a nice change. I have not had the opportunity to do PFTs yet, so I don't know what my current functions are.

My port went on strike. When I first accessed it, we were able to get a small amount of blood return and it was sent off for labs. By the time the lab received it, the blood was clotted and the sample was useless. When they came back for more, my port decided to have a temper tantrum and wouldn't draw back at all, although it flushes perfectly fine.

In all likelihood, I have a fibrin tail at the end of my catheter. I've had this happen several times before, so I wasn't too surprised or concerned about not being able to get a blood return.

For those of you not familiar with the wide world of ports, fibrin is a fibrous protein involved in the clotting of blood. Fibrin starts to build up on a catheter without completely enclosing it. A small piece of fibrin may hang off the catheter tip. This is known as a fibrin tail, which also represents a persistent withdrawal occlusion. These can sometimes be resolved with an infusion of low-dose alteplase.

Two doses of tPA later, I am the proud owner of a port that flushes with ease and gives a beautiful blood return. Whew!

I think that's about all the new news for now, so I'll sign off.

Lauren's Dogs 01/10/10

2010-01-10T11:22:00.002-06:00

I apologize that I haven't had the opportunity to update my blog with the most recent information about Trixie, Buddha, and Tanooki. I ended up back in Club Med on Friday and the first 1/2 of my week was crazy busy at work - trying to finish up things that were outstanding and then also cleaning, packing, doing laundry, etc.

Here's an update on what's happening with the dogs. I believe that some of the earlier e-mails are getting recirculated.

There was a family in rescue (here in Birmingham, AL) that were going to be able to adopt the dogs this past weekend (January 2). Everything looked good - the GHHS was confident that it would happen and they pulled the PetFinder links. On Saturday, the family spoke with the GHHS. They currently have 1 English Setter and 7 pugs as well as other pets. The English Setter tends to roughhouse with the pugs and likes to play - A LOT. There was some concern over how Trixie (the boxer) would react because she is so overprotective of her pugs (Buddha and Tanooki). In addition, they have cats and were not sure how well the three of them would mix with the cats. So they declined to adopt the dogs at the last minute. I found out on Saturday morning, but wasn't able to speak to the GHHS until Tuesday (the facility is closed on Monday).

Right now, the dogs are still at the shelter (Greater Huntsville Humane Society). They've been there since shortly before Thanksgiving. They are still available for adoption.

They will stay there for the time being. We do still have the option to move them to the boarder / kennel in Montgomery if necessary, but the GHHS assured me that they have the means to care for them and the dogs have actually settled into a routine. Angela was going to begin working with Trixie this week on being apart from the pugs during the day to try and work through some of the anxiety / overprotectiveness that they've seen. We are going to continue trying to find a family to adopt them together, but if worse comes to worst, the dogs may have to be separated. I sincerely hope that does not happen, but I understand the reality.

Angela said not to worry about the dogs during while I was in the hospital, and that she will keep a close watch on them. Of course, I will be calling to check for updates, but I may not be able to be quite as active as I have been in finding them a home while I am in the hospital. I will have access to phone / e-mail / and internet but don't always feel good because of the medicines (antibiotics) that I have to take.

(Bump)

The Greater Huntsville Humane Society has agreed to accept directed donations on behalf of these three. If you can support Lauren's dogs, please donate to the Greater Huntsville Humane Society.

You can mail a check to:

GHHS
2012 Johnson Road
Huntsville, AL 35805

Please include a note with your check that the funds are for the care of Buddha, Tanooki, and Trixie.

You can also donate online. Again, please specify that the gift is in honor of Buddha, Tanooki and Trixie.

(Bump)

I am also continuing to raise money on behalf of Buddha, Tanooki, and Trixie, in Lauren's memory. All monies will be used for the care (boarding, food, vetting expenses) of Lauren's fur babies. Any remaining monies will be split 50/50 between the Cystic Fibrosis Foundation and the ASPCA (Lauren's favorite charity). I am using ChipIn (recommended by one of the many rescue groups that I have been in touch with) to accept online donations.

Alternatively, you can mail a donation. A bank account 'In Memory of Lauren Sturdivant' has been established at Compass Bank in Birmingham, AL. This is not a tax-deductible donation as I do not have non-profit status at this time (in process!), but I will mail you a receipt for accounting purposes. If you'd like to mail a donation, please contact me via e-mail.

If you have any questions, please e-mail or leave me a comment. If I don't respond immediately, don't worry. I will respond as soon as I am able (because of the high-dose antibiotics that I have to take, there are sometimes of the day that are pretty miserable).

THANK YOU TO EVERYBODY FOR ALL OF THE HELP!

Monday Night Madness

2010-01-05T10:04:00.003-06:00

And no, it doesn't involve football. I spent a great night with my aunt, C., and cousin, A., having dinner at Cheesecake Factory and then hitting up Barnes and Noble to do a little post holiday shopping.

My family knows (one of the many ways) to my heart is through Barnes & Noble Gift Cards. I even managed not to spend them all at once. So, two new calendars and seven new books later, I arrived at home, a happy little Brandi.

The latest additions to my collection include:

These should (hopefully!) last through my upcoming hospital visit. If not, I might have to send Cheryl off to B&N for backup.

2009 - A Year In Review

2010-01-05T08:53:00.005-06:00

I liked Eva's idea of sharing the first sentence of the first blog of each month from last year that I thought I would do the same.

January - Playbills In Review

Anybody that knows me knows how much I LOVE musicals, theater, Broadway ... shows of any kind.

February - Hi, My Name Is Brandi...

...and I'm a spelling snob. From MSNBC: Fastidious spelling snobs pushed over the edge

March - In The Words of Dorothy

"There's no place like home."

April - Hello World!

Once again I find myself completely neglecting my blog. Anybody that's in and out of the hospital knows it can be an adjustment coming home and getting back to "real life" and that's exactly what I've been doing the last three weeks.

May - Hey, It's The Fifth of May!

After Halloween and St. Patrick's Day, Cinco de Mayo is probably one of my favorite holidays. Why? The margaritas, of course!

June - Live From "Club Med"

it's Me!

July - Wordless Wednesday

(what I'm currently reading right now)

August - What Would You Do?

I am a little late in responding to this, but I wanted to comment on Ronnie's question that he posed last week.

September - Exercise Journal, Day 2

It's another early morning (seem to be having a lot of those lately), but I've decided since my body wants to be awake that I might as well take advantage of the fact and get my exercise out of the way for the day.

October - No news...

...is good news!

November - Friday Fill In

1. Plans and schedules ARE THE BANE OF MY EXISTENCE.

December - Aha! (a lightbulb moment)

Turns out I can also post to my blog via e-mail. More new ways to distract myself from work. What fun!

Lauren's Dogs. 12/30/09

2009-12-30T09:10:00.009-06:00

Hello all -

I am sorry for the delay in posting this information. My partner-in-crime at the office is on vacation this week, so I am staying fairly busy. And the days just seem to go by far to fast.

This weekend (December 26), my aunt and I made a road trip to Huntsville, AL. We went to meet with Lauren's grandfather and also to check on Lauren's dogs, who are still in the care of the Greater Huntsville Humane Society. I thought I would share a few pictures with you of Miss Trixie, Buddha, and Tanooki.

I did not get to meet with Angela on Saturday as she was not there, but I spent quite a bit of time talking with one of the other staff members. The dogs are doing OK. They have a large kennel of their own and they are kept together at all times. They've been allowed to play on the "puppy playground" with the other dogs and get along well with others - no aggression issues. The biggest concern is still Trixie's anxiety about being separated from the pugs.

We are still hopeful about finding a home for Lauren's fur babies. I've been in touch with so many people in the rescue world and I can't express enough thanks for all of the information, help, and kind words I've received.

The Greater Huntsville Humane Society has received several donations to help fund the care of Buddha, Tanooki, and Trixie while they are there. However, expenses will continue and I, unfortunately, can not afford to pay for all three dogs on my own.

I am continuing to raise money on behalf of Buddha, Tanooki, and Trixie, in Lauren's memory. All monies will be used for the care (boarding, food, vetting expenses) of Lauren's fur babies. Any remaining monies will be split 50/50 between the Cystic Fibrosis Foundation and the ASPCA (Lauren's favorite charity). I am using ChipIn (recommended by one of the many rescue groups that I have been in touch with) to accept online donations.

Alternatively, you can also mail a donation. A bank account 'In Memory of Lauren Sturdivant' has been established at Compass Bank in Birmingham, AL. This is not a tax-deductible donation as I do not have non-profit status at this time (in process!), but I will mail you a receipt for accounting purposes. If you'd like to mail a donation, please contact me via e-mail.

We may have a lead on a family in Birmingham, AL that will be able to adopt the dogs and keep them together. Please keep your fingers crossed that this works out. I'll keep you posted.

New Movies!

2009-12-30T08:44:00.005-06:00

There are two new movies I'd like to see. The first, I am cross-posting from Laura. I love musicals, so I am pretty certain that I'd like Nine.

The second is The Young Victoria, about the first years of Queen Victoria's reign and her marriage to Prince Albert.

Perhaps the best Yuletide decoration is being wreathed in smiles...

2009-12-29T11:20:00.016-06:00

The Christmas spirit finally found me on December 24th - as it does every year!

I really do love Christmas -- the good food, the time with my family and the tacky decorations. But I detest Christmas shopping. My ability to procrastinate is legendary and this year was no different than many Christmas' past. Of the 20 something gifts I bought and wrapped, all but three were purchased the day before Christmas. I was still wrapping gifts on the Sunday after Christmas!

My Christmas officially started mid-December with a visit from my mom. I only opened one of my presents while she was here, wanting to save the rest until Christmas Day. But I picked a good one - a $100 gift card to Pottery Barn! I surprised Mom with two tickets to see Wicked in Richmond, VA the weekend after her birthday.

On Christmas Eve, I spent time with Dad, Mitra and her family. We had a blast decorating a gingerbread house, drinking wine, eating dinner, and opening presents.

From Christmas 09

I spent Christmas Day with Dee, Papa, Cheryl and Alex. It was a quiet day, replete with good food and family fun (our version of family fun involves me doing shots of tequila with my grandfather). The family that drinks together, stays together. Or something like that. We opened a few more gifts and although it's hard to choose a favorite, I think it might be these:

Christmas festivities ran through Sunday, when my aunt and two cousins arrived from Virginia. We had our *official* Christmas dinner on Sunday night. And opened MORE presents. My grandfather racked up this year - a new GPS for his car and a new net book.

Although I love all of the gifts that I received, the most thoughtful Christmas present came from my cousin, Amy - artist extraordinaire. She took an old snapshot of Issy and hand drew me a portrait of him. She definitely knows the way to my heart is through my cats.

Merry Christmas to all, and to all a good night!

Merry Christmas and Happy New Year!

2009-12-23T13:02:00.006-06:00

I'm not sure how much blogging I will get to do in the next two weeks, so in case I forget:

A dream is a wish your heart makes...

2009-12-22T12:36:00.000-06:00

Lauren's Dogs. 12/21/09

2009-12-21T16:01:00.004-06:00

On Tuesday, December 8, I wrote a plea for help on my blog. I e-mailed every person I knew at work and at home. I Facebooked. I Googled dog rescue groups in Alabama.

I received an enormous response. Thank you. I can't tell you how much it meant to me (and Lauren) to know that there are people out there that genuinely care for others and their furry counterparts.

I updated last week that we found a temporary foster for Lauren's dogs. We did. Pike Road Kennel has graciously offered to keep the dogs until further arrangements can be made.

Now, I'm coming to all of you again, begging for help. Lauren passed away on December 17, 2009. Whereas my goal was to find a foster family, we are now in need of a forever home. I really want to keep these dogs together, if at all possible.

I've been trying to call the Greater Huntsville Humane Society all day but have been unable to get through. Not sure if it is their phone or mine.

Please e-mail me, comment me, or message me on Facebook if you know anybody that can help. This is so important to me.

Lauren Update. 12/21/09

2009-12-21T15:15:00.003-06:00

Thursday was a bad day. I woke up late, didn't have any clean clothes, lost my keys, spilled tea on myself on the way to work, went home to change clothes, was late to work, had to park a million miles away from my office, blew a fuse causing my whole row of cubicles to lose power, had to run a 200 ft. extension cord run from another cube to mine to restore power, etc. You get the point. It was a stellar start to what seemed to be a comedy of errors.

The only thing that made it better was the fact that I figured out how to do voice commands in my car that morning. Yes, I've had it for three years. No, I didn't know it could do that.

Then Lauren died. And my day got worse.

Rob called me at 12:54 PM. He said, "Lauren's coding." I hung up the phone and ran. Too late. It took me 14 minutes to get to HTICU. It was the longest 14 minutes of my life.

I had talked to Lauren's nurse for just a moment earlier that day. She'd had some bleeding around the ET tube and Dr. Y decided to do a bronchoscopy (the same procedure Lauren had done on Monday). Once he got in, he cleaned out a number of blood clots. She was stable but as they watched, she became harder and harder to vent. Dr. Y. went back in a second time, clearing out more clots. Then it happened. A blood vessel burst. There was too much bleeding and Lauren's heart stopped. They worked on her for 30 minutes but were unable to get her back.

The Dr. says she didn't suffer. (Don't they always say that?) Lauren had enough spirit and drive to fight (which was evident in one roll of her eyes) and survive more than most people can imagine. In the end, her body just wasn't strong enough to keep up with her fiery spirit.

I got to meet Lauren's grandfather ("Papa Bo") and her step-grandmother, Jean, on Thursday. They are the only members of Lauren's family that I have ever met or talked to, other than the one time I briefly met Susan, Lauren's mom.

Both Susan and Lauren's Dad were cremated. Lauren will also be cremated and their ashes mixed together. Susan had a list of places that she would like the ashes spread and the family is going to try and honor those wishes.

Lauren wouldn't have wanted a "service" or a "memorial." She'd beat me up the first chance she had if she knew I (or any of us) were moping around. But I do want to have a celebration of Lauren's life and provide an opportunity for all of her families to come together and remember the red-headed firecracker that blazed through so many lives.

Shining brightly, wherever you are...

2009-12-21T14:58:00.004-06:00

Lauren:

I know that wherever you are, you are the brightest, sparkliest, most glittery object in the vicinity. I knew that we were destined to be friends, "CF BF's" and sisters the moment I first heard that you liked things that sparkled and glittered as much me.

I'm not feeling so shiny and sparkly today. I know it will get better. But just know that part of me will miss you as much as I miss my Eric. CF has taken to many of my friends, but you two were, without a doubt, the closest.

I have Frog. He will always have a home with me. Rob and Renee went to Huntsville on Friday to get your things. I went to the hospital on Saturday to get the rest. I will go through it sooner or later, but more than likely later. My head knows you are better, but my heart isn't ready to let go just yet.

I'm fine. I'll be fine. But I miss you.

Lauren

2009-12-17T19:56:00.003-06:00

Update, 11:56 PM: CF sucks. I hate it sometimes.

I love you, sissy. I will miss you forever. But I am happy that you are with your Mom and Dad now.

I need some time to process this. I will write more soon.

Sent from my iPhone

Lauren Update. 12/16/09

2009-12-16T13:35:00.004-06:00

What a day it's been. Things with Lauren continue to be a roller coaster ride - full of ups, downs, twists, and turns. Here's the latest:

La did good through the night, all vitals were relatively stable.
Her kidney function has been marginal and her electrolytes are out of whack, so the Drs. have decided to go ahead with dialysis. They weren't able to get her scheduled in Radiology because it's not emergent, but Dr. Y. does want to get the ball rolling. He will be placing the catheter this afternoon.
La's nurse did raise her vent settings today because she was retaining CO2 again. Her latest blood gas showed an improvement, so *hopefully* they will be able to adjust the numbers down again.

While I hate that we are having to resort to dialysis, I am hopeful that this should help with the fluid retention that La has been fighting. She's been given high doses of Lasix and it's still not pulling off the fluid. Just to give you an idea, Lauren is probably retaining close to 40 (yes, forty!) pounds of fluid on her pint size body.

IN OTHER NEWS --- [insert drum roll]

I am happy, happy, happy to report that we have a foster home for Lauren's dogs. My aunt's co-worker (and my former Delta Gamma little sister) talked with her boarder / trainer. The owner of Pike Road Kennel has agreed to house Lauren's dogs pro bono until Lauren is able to care for them herself. This is such a huge relief!

He has asked that we help with food expenses and, of course, any vetting expenses that might arise. So far, they have been very understanding of the predicament we're facing and have agreed to work with us on the financial aspect.

The plan right now is to transport the dogs (my aunt and I will be embarking on a field trip) from Huntsville to a small town outside of Montgomery, AL on December 26. It's going to be a long day on the road, but so worth it!

Pike Road Kennel is located on 80 acres of rolling hills and tall trees. Both Angela (at the GHHS) and I feel that this will be a good temporary home for the fur-babies.

I am hoping to iron out the last of the financial details next week. I've received many offers of help, which are greatly appreciated. I will contact everybody as soon as I have answers about where to direct donations, etc.

If you have any questions, please feel free to comment on my blog or leave me a message on Facebook.

Lauren Update. 12/15/09

2009-12-15T11:31:00.003-06:00

Miss Lauren held her own during the night. It wasn't an easy night, but it's a new day. Per her nurse, she did not have any significant bleeding after the procedure yesterday, which is good.

She was zonked out when I went by to check on her yesterday afternoon. She is still zonked out this AM, but her body is exhausted from all the work it is doing.

Her pH level is high which means that she is retaining CO2. Fortunately, this can be controlled with vent support. The Dr. may raise her rate in order to compensate for what her lungs can't do right now.

It will get better. I hope.

The Mischief Maker

2009-12-14T15:44:00.018-06:00

Hallow Kitty is fast earning her reputation as the most notorious mischief maker in my house.

After waking up to a light dusting of snow in Birmingham last weekend, I curled up on my couch with a cup of hot chocolate and my book...

(cue reality check)

Truthfully, I was sacked out on the couch, watching TV and drinking a ginormous cup of Milo's Sweet Tea. Pretty much what I do every Saturday morning.

That first opening may have sounded nicer but since I have zero skills in the "anything that could be remotely considered domestic" category, it's pretty much a given that there is no way I'd be able to manage making hot chocolate without burning down the house. No comments from the peanut gallery, please.

Anywho.

I meandered over to my bedroom where I found this left in the wake of Hallow.

Thanks, sweetie. Mommy will get right on that task of cleaning up after you. Again.

I know everybody doesn't find my cats as entertaining as I do, but I've done so much serious writing lately about my baby sis, Lauren, that I thought some levity was in order.

Lauren Update. 12/14/09

2009-12-14T13:11:00.004-06:00

Shall we dance? The last few days have been baby steps forward, but today we took one step back.

Lauren looked good yesterday. Awake and trying to get her point across, even with a tube down her throat. Dr. Y. told me that the chest x-ray was looking better and that they would hopefully try weaning La off the vent over the next several days. Dr. Y. decreased her vent settings to 40% with a PEEP of 5.0.

This morning I made my daily call to check on La. I usually call around 9 AM, but today the nurse was with Lauren while the Dr.'s were doing a bronchoscopy. Not unusual, so I wasn't worried. I called back around 10:15 to get an update. No news. Finally, about 11:45, I was able to speak with Lauren's nurse and find out what the heck was going on.

Last night was a rough night. Miss La spiked a fever and was breathing shallowly, even with the vent support. This morning she was still running a fever and the nurse found a small amount of bleeding around the ET (endo-tracheal) tube.

During the bronch, the Dr.'s were aggressive - trying to suction out as much junk (phlegm) and any blood that they found. Because a bronch can stimulate the vagal nerve and cause an inflammatory response, it caused Lauren's blood pressure to drop. They are treating with BP meds and watching her closely. She's OK.

I'll be by to check on her later and will post an update. That's all for now, folks.

You've made a difference for people with CF:

2009-12-14T09:07:00.003-06:00

2009 has been a banner year for raising CF awareness. Check out the many ways you've helped:

102 Members of the U.S. House of Representatives co-sponsored the Improving Access to Clinical Trials Act of 2009 (H.R. 2866). The House of Representatives included the bill as an amendment to the larger health care reform bill passed in November. The CF Foundation continues to work with both the House and the Senate to pass the bill.
20 new Representatives became members of the House Congressional Cystic Fibrosis Caucus – bringing the total to 147 and making the CF Caucus one of the largest in Congress.
In September, you restored funding to New York’s CF Adult Care program after it had been targeted for elimination.
In October, your efforts helped protect New York CF patients’ ability to use the Cystic Fibrosis Services Pharmacy by encouraging New York Governor Paterson to sign legislation to allow people with CF in that state to continue getting their medications through the Pharmacy.
In June, all 50 states, along with Washington, D.C., began requiring that all newborns be automatically screened for cystic fibrosis – a big win for CF advocates.
In May, in a Senate Appropriations Committee hearing on biomedical research, Senator Richard Shelby (R-AL) and Acting NIH Director Raynard Kington, M.D., Ph.D., acknowledged the CF Foundation as a leader in rare disease research.
In April, you protected the Idaho Adult CF program from funding cuts that would have reduced health care services for people with CF in the state.
In January, after hearing from advocates like you, Senator Patty Murray (D-WA) spoke of the importance of the Children’s Health Insurance Program to Brenna Krug, a 6-year-old child with CF from Marysville, Wash. during the Senate debate on the program. In February, President Obama signed the bill into law, expanding the healthcare program to an additional 4 million children, including many with CF.

Thank you for your support!

Lauren Update. 12/13/09

2009-12-13T13:22:00.004-06:00

Sorry for not posting last night, all! We saw Miss Lauren yesterday and she looked better. All #'s are good, especially when people aren't harassing her. She has been much more awake / aware the last few days. Partly because her body is getting used to the Diprivan (Jackson Juice) and it's not keeping her as sedated as before.

The nurses are keeping her comfortable, though. When she wakes up, she wants the tube out NOW and gets frustrated, which I can completely understand. Miss Lauren is fighting to get off that vent!

Yesterday she figured out how to move her hands enough to flip people off when she's annoyed. Once she figured out how to do it, we started seeing it a lot more often. Mostly aimed at the nurses. =)

Greater Huntsville Humane Society

2009-12-11T10:42:00.007-06:00

Many, many people have responded to my plea for help about Lauren's fur-babies. THANK YOU SO MUCH!

Several people have expressed that they are not able to foster but would be willing to help support the financial aspect of feeding, boarding, and vetting three dogs. As I am a single, 31 year old with three cats, I well know what it can cost to keep three animals living in the lap of luxury [smile].

The Greater Huntsville Humane Society has agreed to accept directed donations on behalf of these three. If you can support Lauren's dogs, please donate to the Greater Huntsville Humane Society.

You can mail a check to:

GHHS
2012 Johnson Road
Huntsville, AL 35805

Please include a note with your check that the funds are for the care of Buddha, Tanooki, and Trixie.

You can also donate online. Please specify that the gift is in honor of Buddha, Tanooki and Trixie.

If you donate online in honor of these special babies the Humane Society will send an e-card regarding the gift. If you'd like to send Lauren a message, please include it in the message box that is provided on the form. You can direct all messages to my e-mail address (bankrgrl - at- gmail - dot- com) and I'll make sure she knows about every ounce of support she has coming in from all corners of the world.

THANK YOU. THANK YOU. THANK YOU.

Lauren Update. 12/10/09

2009-12-10T21:16:00.003-06:00

I only got to see Lauren for a few minutes tonight, but she looked better! Her vent settings were still at 40% but the PEEP setting was down from 12.0 to 8.0. YAY!!!!

Otherwise, all her #'s look good. The only thing the nurse has been trying to keep in check is her blood sugar. They've started her tube feedings back, so sugars are running in the 300 - 400 range, even with insulin. Hopefully this will resolve itself in the next few days.

Please keep the prayers and good thoughts coming - they ARE making a difference.

I'm still working on finding a foster home for Lauren's fur-babies. I've had a good response from several rescue groups that are going to help get the word out. I will keep everybody updated on the latest. If you have any information that might help, please contact me as soon as possible.

P.S. I *totally* missed my 100th post the other day! Oops!

P.P.S. Rob has invaded my kitchen. It will never look the same.

Lauren Update. 12/09/09 (Evening)

2009-12-10T08:54:00.002-06:00

Saw the princess tonight. She's OK - stable. No steps forward today, but not going backwards either. I know she is frustrated beyond all belief that she can't talk (or yell!) at anybody right now. Keep her in your thoughts and prayers, por favor.

Lauren Update. 12/09/09

2009-12-09T11:45:00.006-06:00

Rob spent the day with Lauren yesterday and I went up after work, which is our usual plan-of-attack. She looked better yesterday afternoon and I was excited to see that her vent settings had been decreased to 40% O2 with a PEEP of 12.0. Better!

This morning I spoke with Lauren's nurse and he said she had a relatively good night. Her nurse practitioner said the CXR (chest x-ray) looked better this morning. Hopefully they will be able to wean Lauren off the vent a little bit more today.

It's baby steps, but baby steps in the right direction. We had no news on Lauren's Mom (Susan) as of this morning.

Update, 1:39 PM: I'm working frantically to get this information out to the public and find someone that can help. I've contacted many local news stations and papers. I received an e-mail back from Kristen @ NBC13 and they have already Twittered the link to my blog about Lauren. Please keep the word going!!!

Update, 2:01 PM: We just received news that Lauren's Mom passed a short while ago.

If you want to know more about Lauren or help this family, please read this post.

Lauren. A plea for help!

2009-12-08T12:26:00.023-06:00

Update, 12/09/09, 2:01 PM: Lauren's Mom passed away earlier today. Please keep this family in your thoughts. If you can help me find a home for Lauren's fur babies, I would greatly appreciate it.

Many of you have seen me posting on Facebook (follow me) and on my blog about Lauren. You've probably figured out that Lauren is another CF patient, just like me. But Lauren has always been more than "just another patient," and over the past year we have become fast friends. In the past few months, she jumped ranks to "World's Best Unofficial Little Sister."

So, how'd we end up here? I first got to know Lauren when she moved to Alabama from New Orleans. She was on the transplant list at Tulane but was transferred to the University of Alabama at Birmingham after Hurricane Katrina.

My first impression of Lauren was that of a pint-sized, loud-mouthed firecracker. She's currently a red head and I can tell you that she comes by the temperament that red heads are famous for honestly.

I found myself rather jealous of Lauren's creative bent. As a kid, I was well known for my obsession with crayons, colored pencils, and markers (just ask my father). This girl put me to shame! I've never seen so many art supplies in my life. She proceeded to decorate everything imaginable on the Pulmonary unit - making name tags for the nurses and respiratory therapists, organizing and decorating our "menu book," etc.

I decided to get over my jealousy, and I'm glad that I did. We might be a decade apart in years, but we were both amazed by the number of similarities that we shared. From birthdays (we were both born on the 21st of the month), family relationships, a morbid sense of humor, and a love of faeries, it was a bit eerie how often we found ourselves on the same page of the same book.

It's been a running joke between La and I that I'm the "grown up" and she's the "baby sis" in our friendship. I have to constantly remind her that the only reason she gets away with calling me grown up is because I have a mortgage. To be completely honest, Lauren has been through more things than any grown up should ever have to face and always comes up fighting.

Watching Lauren fight with every ounce of strength in her and then come out with a flippant remark at the end shows me that I'm not nearly as tough as I might claim to be. At 21, she's been through more than most people can ever imagine - losing a home in Hurricane Katrina, then losing her father to cancer. Now, while she is in the fight for her life, she is having to watch her mother battle Stage IV cancer.

Which brings me to the point of this post --

You know that Lauren is fighting for her life. She made it through transplant only to be set back with a fungal infection. This infection is taking every bit of strength that she has in reserve. On Friday, the Dr.'s made the decision to put her back on the ventilator to help her body rest. Both Rob (Lauren's friend from high school) and I are with her every day. Lauren has no other family that can be with her during this time.

Now, Lauren's mother is in the last stages of her fight against cancer. Her friends from New Orleans have rallied around her to keep her comfortable in these final days/weeks. Sadly, Lauren's mom had to relinquish care of their four dogs to the Humane Society because she could no longer take care of them.

These dogs are one of the good things that Lauren has. We compare stories about her four crazy dogs and my three crazy kitties. I can't tell you how important it is for these dogs to still be there for Lauren when she is well.

I spoke with Angela @ The Greater Huntsville Humane Society today, December 8.

There are four dogs total - 3 pugs and 1 boxer. Lauren's grandfather kept the oldest black female pug (Lilly) because she is in poor health. Lilly is not available for adoption. The other two pugs (Buddha and Tanooki) were taken to the shelter. Trixie (the boxer) was also taken to the shelter. They have been there almost two weeks.

(This is the information that is on the Greater Huntsville Humane Society's webpage):

Buddha

She is a very playful girl!! She loves attention and is very demanding of it. She has come to us with her house mates, and her former owner's final plea is that they all stay together.

Breed: Pug

Primary Color: Tan
Age: 7 yrs

Tanooki

This hefty little guy is full of love! He came to us with his house mates, that he has lived with always.

Breed: Pug

Primary Color: Black
Age: 7 yrs

Trixie
She is a smaller boxer, a little shy at first meeting. Once she warms up, she loves cuddles and kisses. She is more comfortable with her house mates.

Breed: Boxer (mix)

Primary Color: White
Age: 2 yrs

The GHHS has placed the dogs on a thirty-day hold for adoption. All three dogs must stay together (Trixie - the boxer - is very, very dependent on the two pugs, Buddha and Tanooki). They will do a pre-adoption visit to ensure that the home is large enough for all three and capable of taking on the responsibility. They also do post adoption home visits to ensure the care of the dogs.

All three dogs have had their vaccines updated and will be micro-chipped. Tanooki had to be taken to the vet to have his eyes and sinuses treated, but is doing well.

Please help me.

This family (both human and canine) needs it.

We need to find someone that can adopt or foster the dogs until Lauren is well. I know that this is a huge responsibility but it is so important that Lauren know that her babies will be taken care of, no matter what. You can also help by sponsoring the dogs while they are with the GHHS. If you would like to make a directed donation for the care of these three, I can put you in touch with Angela @ The Greater Huntsville Humane Society.

I am sharing this information via e-mail, blog, and Facebook. This is my desperate plea to help get the word out. This family has overcome too many trials and there will be many battles ahead. We need your help! Anything you can do - great or small - will be greatly appreciated.

If you, or anybody you know, can help please e-mail me, call me, leave me a message on Facebook or leave a comment on this blog. Or all of the above.

Update, 4:00 PM: Please feel free to share this information.

Update, 6:15 PM: We've just been informed that Lauren's Mom (Susan) only has a few hours left. Maybe a day. I hate this. I hate this. I hate this.

Lauren Update. 12/08/09

2009-12-08T12:22:00.005-06:00

I was exhausted last night, so I did not get a chance to post this update about Lauren from my Facebook. But here's the latest:

Stable yesterday (12/07/09) and through the night. Her #'s are about the same. Even though things aren't moving forward, I'm happy that they aren't going backwards.

She was definitely more aware of her surroundings and would respond to us when we talked to her. She is sick of having all these tubes in her & getting antsy to get them out. Her lungs still need the help, so she will have to keep them a little longer.

Kandace Lynn Mullins

2009-12-07T13:27:00.003-06:00

MULLINS, KANDACE LYNN, went to be with the Lord on November 28, 2009. Preceded in death by her father, Dewaine Mullins and grandparents. Surviving grandfather, Winford Mullins; fiancée, Seth Minter; mother, Ronda Anderson; stepfather, Bill Anderson; siblings, Brian and Teresa Mullins, Kade Anderson; and uncle, Gregg Williamson. There will be a Memorial Service December 3, 2009 at The Innerchange 22478 Bucksville Rd McCalla, AL 35111 from 4:00 p.m. to 5:00 p.m.

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Kandace was several years younger than I, but I can remember a few memorable hospital trips from Children's where she and I managed to talk ourselves out of trouble. After I moved to UAB in the first transition, our hospital visits never seemed to coincide and we lost touch.

I remember being thrilled the moment that I heard Kandace and Rocky G. were listed for transplant on the same day. But I will never forget the moment when we found out that they would be transplanted on the same day, as well.

Breathe easy, Kandace. It's been a long and winding road.

Lauren Update. 12/06/09

2009-12-06T21:12:00.005-06:00

Rob and I spent the day with Lauren. Overall it was an encouraging day. Most of her #'s were good. She did receive another unit of blood because her hematocrit was low, but the vent settings were down to 50% when we left tonight! =)

La was a little more aware of her surroundings this afternoon but since her lungs still need a break they are keeping her sedated.

Lauren Update. 12/05/09

2009-12-05T19:07:00.002-06:00

2:00 PM:

Lauren was mostly stable through the night. Been a little bumpy this afternoon. She is overbreathing vent and they have had to increase sedation. She was on 70% settings when we got here but was de-satting back into the 80's so they have upped settings back to 100%. She is also getting blood b/c her hematocrit was low.

7:00 PM:

Miss Lauren is hanging in there. Dr. Y. started an arterial line to make it easier to check ABG's and monitor her arterial blood pressure. They also started another CVL to give more IV access. They did a CT scan of her abdomen this afternoon but no results by the time visiting hours were over. Dr. Y. promised to keep me updated on her status ... he is taking very good care of her. Please keep the good thoughts coming!!!!

Friday Fill-Ins

2009-12-04T21:24:00.002-06:00

1. You get one first impression.
2. It's my right to fight.
3. It's Miller time!
4. This is ridiculous!
5. I feel more helpless watching my baby sis fighting for each and every breath.
6. Good luck and goodnight!
7. And as for the weekend, tonight I'm looking forward to taking some Nyquil and getting some sleep, tomorrow my plans include buying some new boots, visiting Lauren, partying with my friends and Sunday, I want to hear that Lauren is doing better and go to Sips-N-Strokes with Katey and Ashley.