Rate of degeneration

[anonymous]

Just curious, for those who have a FEV1 approimating <30-35%, how long did it take you to go from 50% down to where you are? Also, did it creep up on you or was it noticable the transition from 50% to 30%?

Thanks,
Lance
w/CF

 

[anonymous]

Some one please answer this question as best you can. I was last tested at 50% and I know I haven't improved. I am apprehensive as to where I am now in %. I just want to get a better handle on anticipating and accepting what my current or new FEV1 is before I go in and get it re-tested.

Thanks.

 

[ihatecf]

Well, it is completely different from one person to another. There is no time strain for your fevs to go down to thirties. You can still keep your fevs in the 50s for 5 years who knows. Mine were in the 50s 3 years ago, but now they are in the high thirties after tune ups. I had to watch them go down slowly over that period. However, the major blow I got in my life was when I was rubbed my fevs so suddenly from the high 70s to the low 50s by just one pseudomonal infection which wasnt treated at the right time. That happened in a period of 4 months would you believe it. Anyways, as I said earlier it is not rational to predict degeneration because it depends on various factors. Goodluck, and I advise you not to worry about this stuff. Just hang on to your treatments.

 

[Debi]

I totally agree with the previous writer who said to not worry so much about FEV rates falling. I don't even know what mine are any more. Doing the tests exhausted me so much and created so much anxiety, that my doctor and I agreed to quit doing them. I focus my attention on my treatments, exercise and enjoying life. I do measure my O2 levels regularly. My lungs are very old and very bad, but I'm doing great in spite of it all. I suppose if I ever decide to pursue a lung transplant I will need to have all the measurements, but right now that is not part of my plans.