Tuesday, July 30, 2013

Expect The Unexpected

Submitted by Laura on Fri, 02/10/2012 - 12:43am

So, if you have been reading my prior blogs, you've probably noticed that I have not been feeling that good the past 2 months.  I was getting concerned, so I bumped up my doctor's appointment from March to today.  I was expecting to come out of the appointment today with lower PFT's (lung function) and the doctor recommending a hospital stay for a 'tune up'.
So, I headed in with Paul to do my PFT's.  The look in Paul's eye when I finished told me that it was not good news, but then he said, "They're better than last time".  I said, "You're shitting me?!?!?"   See, if my PFT's are better, it means my LAS score will go DOWN, meaning a LONGER wait for transplant, because I'm HEALTHIER.  I know, I know, this IS a blessing, but it's also a curse.  Now I have to live in this world where my life is treatments, working out, sleeping, eating and feeling like CRAP.  I'm not any closer to new lungs and being able to breathe.
I should be glad, though, because it's always better to keep your OWN lungs for as long as possible, since lung transplant is risky and unknown.  It's just funny that I've been feeling so crappy, but all my tests say I'm healthier.  What the hell?  This disease is CONFUSING!
So, I met with the doctor after my PFT and his advice is to stay OUT of the hospital since I'm not bringing up any more sputum than normal and my numbers are up.  In his experience, end stage lung disease means one day you're up and the next you're down with no rhyme or reason. He suggests to keep plugging along, being 110% compliant, exercising and just staying positive like I have been.  I think he's proud that I've remained stable this whole past year.
So, okay, fine, I'll deal with whatever you've got for me, Life.  Bring it on.

On a lighter note, the doctor shared with me that he had a brief in-patient hospital stay a few weeks ago and he has a whole NEW appreciation for what his patients go through!  His list included, but not limited to: TERRIBLE food, constant beeping machines, waiting 10 minutes for someone to turn off the beeping, being woken up at 3 am for a blood pressure reading, and lack of assistance when trying to use the facilities (staff acting like they're doing him a big favor by helping him to the bathroom).   He's always been super caring, but I'm secretly glad to see he has gotten some real perspective to help him relate even more with his patients. wink  I introduced the concept of starting a CF Advisory Board at the clinic, and I think this experience has made him even more open to it!  I will be sad when I have my transplant and I no longer need to see this doctor....I really like him!  We were chatting for 45 minutes today.  I don't feel like seeing this doctor is a chore, I love going! 

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