Stopping/Reducing work

[Niamh]

Hello all

Very long time lurker here . I have a question about what stage one should consider stopping work. I know a lot would depend on the individual, their work type and the support available to them. But I'm interested to know at what lung function percentage is it generally considered time to start making managing CF your full time focus?

For those who no longer work what was the key deciding factor in making that decision? Your lung function, how you felt or doctor's advice?

Many thanks
Niamh

 

[MichaelL]

I went on disability three and a half years ago and doubt I'll return to work. I was starting long-term treatment for mycobacterium abscessus and going in IVs for an extended period. I'm still on IVs and disability. My lung function is around 45%, which is where it was when I first went out. I worked for years with 50% lung function.

Basically, I stopped working because of too many treatments (I.e., the IVs, lots of doctor appointments, home-care nurse visits, etc.) rather than lung function. Even though my lung function is the same as when I went out, my quality of life has gone down. I find myself out-of-breath easier, I walk slower, and my body needs more sleep. I've also started having GI problems.

My doctor agrees that it would be difficult for me to work, but it was not their suggestion that I stop.