I would like to share with you a seemingly hilarious video (as reported by my one-person sample viewer), of me from last night. It is extremely short.
One of the things one does post-transplant is take their Pulmonary Function Test on a small hand-held device, every day. I tend to get overly excited in my post-transplant life when my PFTs go up, because in my pre-transplant life, my PFTs were always, shall we say, sucky. My parents and doctors generally thought that I was “not good at the test” – whatever that means – because I never “blew” consistent scores (insert blue jokes here).
Now that I have new lungs, I seem to have a similar problem, but of course slightly different, enough to drive me a little nutso (like every other aspect of my body right now). I can make three consistent scores on a given day – which is typically how your “real” score is calculated- getting three scores that are within I think 5% of each other or something- but I get crazy-ass different scores from day to day. Grr. So sometimes I blow a really high score and then I think later that it was a fluke because I can’t do it again for 2 weeks, and similar with the low scores.
So, last night I had this really high score (for me as I rebuild) of 2.51 FVC and 1.88 FEV1, and then today the numbers went back down to 2.29 and 1.77. Grr.
I want the points. All the points. And though that represents about a 4% difference – it is annoying as certainly tomorrow it will go back up again.
Let the record show that today was also a prednisone step-down day to 10 mg /day – that’s my pre-tx dose!! SUPER. Next step- 7.5mg!!
Okay, latah playahs,
cg bp
I hate doing PFT's...they give so much anxiety over the whole thing because I am so worried about what my numbers are going to be! Its lessened a little since I have been "activated" on the list but before it was REALLY out of hand...
ReplyDeletei have a similar issue post-tx, so i'm pretty sure we can't both be THAT odd ;) on a totally unrelated note, why am i still on 20 mgs of pred every day? definitely going to whine to my doctors about this.
ReplyDeleteyay for PFTs that don't suck! yay for new lungs! boo for prednisone, but what you gonna do? hope you're feeling fantastic!
I am not any good at the tests either. They think it was because I was diagnosed so late. But I feel your pain. God Bless and keep on hanging in there!
ReplyDeleteThey are letting you go lower than 10mg...hmmm...I'm on 10 and they said that was as low as I was going to get....
ReplyDeleteI think variation is normal in the testing, unless it's huge swings. Plus or minus 5% I would think would be normal. Short of it is I fluctuate too. I have hit over 4.0 FVC and fluctuat over and under that slightly. Needless to say I'm bummed when its back under 4.0....
James- I think the difference in prednisone doses is probably just a weight/gender thing. I'm on 10mg per day, then I'll go to 7.5, then 5 a day "FOREVER,"- They are big on the word FOREVER in my tx binder, and I always think its funny.
ReplyDeleteI'm always afraid to do my pfts every day... i don't want them to be lower than the day before! it seriously stresses me out... but YAY congrats :) I'm still on 20 mg prednisone (aka evil drug... I was on 20 before tx though, so I'm looking forward to next week when i get to drop)
ReplyDeleteha, i get a kick out of FOREVER in the binder, too... but you know what? At least there IS a forever... it's so nice planning things for the future. Keep on doing well! You're a role model for the rest of us :)