Whoop Whoop!!! I made it to 39! When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing). I got a great birthday present of getting off IVs yesterday. It was a long 3 weeks of antibiotics. I am feeling pretty much the same which I will take because I am not worse. Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain. I have a clinic appointment next week. I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.
Until next time…
5 thoughts on “It’s my birthday!!”
Happy birthday! I’m glad you got off IVs, right in time. I also just finished a tune-up, and I don’t get much bounce back these days either. It’s frustrating for sure, but just maintain and do what you can do. Have you been put into any CTFR trials? They are promising! I have been in a trial for my heterogeneous nonsense mutation, although on the placebo group (ugh). Hopefully, I go open label in a little over one month, and the data is pretty outstanding! There’s great hope on the horizon, that wasn’t always there for us. I am 40, so we have a similar outlook on life w CF. Keep your head up! I like your blog 🙂
Thanks Chad! I’m not on any of the new drugs or in any study. I was on Symdeko but it messed with my depression so I stopped it. I also tried Orkambi and it made my chest tight so I couldn’t continue. We shall see about the new triple drug coming out. Thanks for reading my blog!
I also tried orkambi during the trials, same side effect, chest tightness. I’ll let you know how it goes once I start the drug. Also, check out my blog as well
Keep on going strong! Hope to keep in touch!
Just followed your blog. Thanks!
Very nice blog you have heere