So I completely forgot to mention that I had a Shands (my transplant center) check up coming up. It was yesterday and I have to say it went pretty well.
They are THRILLED that I have started my pulmonary rehab and say thats the best thing I could do for myself for after transplant~~which I already knew! :)
One thing that I was really worried about was doing my PFT's. I thought for sure they would have gone down. It's been awhile since I have had to do one and I have been in the hospital A LOT lately so I was a little concerned about what the results would say. To my surprise my FEV1 was actually the same as it was a year ago which I am SO thankful for.
They did tell me that when I am moving around I should be wearing my oxygen more...which I kind of knew already it just sucks them actually saying it. When I am sitting my oxygen stays ok but as soon as I move it drops which isn't good. I am hoping with me being more active now with the exercising and stuff that will improve a little but who knows.
Also, I know a few CFers who read my blog are/were on oxygen all the time and I was wondering what you did/do for when you went out. Did you use big "E" tanks or did you have something smaller to lug around??
At home I have a big concentrator which I use when I sleep and then I have a little concentrator that I bought a year or so ago to take with me to NY (its like 10pounds and it is portable and acceptable on airplanes and I needed to be able to have something with me to sleep at night) that I use when I am around the house but the battery life on that thing isn't that great so its plugged in a lot of the time.
Anyway...any feed back on this is appreciated. IF I have to start wearing oxygen when I am out the least noticeable kind is the better! Thanks in advance~Jen
How Things Are
3 days ago