Lung Tx

[anonymous]

My husband just got listed for a lung tx, and we were wondering how hard it is for CF'ers to regulate their antirejection meds since digestive absorption is obviously an issue. Also, I have heard several people tell me to definitely go to the support groups - that I will need it more than him. My questions is, why are they telling me that? It seems like we have been through so much already, and we're trying to prepare for that the best we can by being informed, but I don't see how it could be much worse than what we've been through. Thanks for the advice! -- j

 

[anonymous]

This is only a guess but is it because things will be totally different after a transplant. New meds, new capabilities. It won't be harder than you already have it just different. Anyhow I am just guessing.

 

[anonymous]

I had a transplant 6 months ago and am on cyclosporin which needs to be taken with digestive enzymes. In the weeks after transplant they will perform regular blood tests to gauge whether he absorbing the drugs correctly.As for the support groups no one in my family went but I guess it would be for more prior to the operation during the wait. Depending on how sick your husband is/gets it could be an anxious wait for the operation and wondering if the worst will happen is not a good feeling. Talking with others in your position could benefit.I know that when I was waiting it was just something I had to deal with as part of my life and because Cf is a progressive disease you get used to dealing with all the shit that goes on. So in that respect your husband is probably better equipped to deal with it than you. I know that if I had to watch someone that I loved getting sick it would be very distressing.Post transplant things will be completely different - a new begining.