Saturday, January 14, 2012

Hello? Hello! Anybody out there?

[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.


Amy said...

Glad to hear from you!!!!! It has been almost a year since my referral to the transplant clinic and I am glad I am doing it this way. We started with a meet and greet and decided to start the evaluation just in case. You never know with CF!

Hopefully your numbers come up and you can figure out what is causing such a decline. Much love to you!!!

Kelly said...

I'm sorry things on the health front are less than stellar, but I am so, so, SO excited about getting to see you at the DG reunion this summer!

Keep blogging, OK? We like hearing from you!