coltsfan715
New member
Josh,
I completely think that transplant is worth it and do not see it as a struggle at all. That being said there are some people that I know that have had a hard time with a lot of ups and downs. Even those people though would do it again if it came to that.
As for what you go through - for me I had a lot of pain issues but I knew I would. The pain was beyond frustrating and overwhelming at times but it was not enough to make me regret my decision. I just learned that the pain meds never would completely take away the pain but they made it tolerable. There is heavy rehab program and a lot of appointments to go to when you are first transplanted and frequent appointments for the first few years. I am now 2 almost 2.5 years out and am at a point where I have check ups every 6 months with breathing tests, xrays and lab work and such.
The one thing that I think can be an adjustment for some with CF is that you can't wait to get better when you get sick. You HAVE to call and stay on top of things. My center gave me the tip that if I wake up sick okay ... but if 5 or more hours pass and I still feel sick then call them. I have been sick a handful of times and each time I was hospitalized for a few days (longest stay 2 days shortest not even 24 hours). Once was for my blood sugar and the others were for stomach illnesses and a UTI which caused major and severe symptoms for me. Each time it hit me like a ton of bricks. I woke up okay and then started feeling badly and within 45 minutes I was vomiting out of control (including with the UTI). I have not had and major lung issues since my transplant though just stomach issues.
Life after transplant in comparison to what it is likely like for you now pre transplant is incredible. To me it is incredible in comparison to what I can remember from when I was "healthy". Just overall it is a different kind of breathing it is not inflamed or like breathing through cement or anything like what it is pre transplant.
I wish you the best and I hope that your evaluation goes well and that if you choose transplant that you do not wait too long.
Lindsey
I completely think that transplant is worth it and do not see it as a struggle at all. That being said there are some people that I know that have had a hard time with a lot of ups and downs. Even those people though would do it again if it came to that.
As for what you go through - for me I had a lot of pain issues but I knew I would. The pain was beyond frustrating and overwhelming at times but it was not enough to make me regret my decision. I just learned that the pain meds never would completely take away the pain but they made it tolerable. There is heavy rehab program and a lot of appointments to go to when you are first transplanted and frequent appointments for the first few years. I am now 2 almost 2.5 years out and am at a point where I have check ups every 6 months with breathing tests, xrays and lab work and such.
The one thing that I think can be an adjustment for some with CF is that you can't wait to get better when you get sick. You HAVE to call and stay on top of things. My center gave me the tip that if I wake up sick okay ... but if 5 or more hours pass and I still feel sick then call them. I have been sick a handful of times and each time I was hospitalized for a few days (longest stay 2 days shortest not even 24 hours). Once was for my blood sugar and the others were for stomach illnesses and a UTI which caused major and severe symptoms for me. Each time it hit me like a ton of bricks. I woke up okay and then started feeling badly and within 45 minutes I was vomiting out of control (including with the UTI). I have not had and major lung issues since my transplant though just stomach issues.
Life after transplant in comparison to what it is likely like for you now pre transplant is incredible. To me it is incredible in comparison to what I can remember from when I was "healthy". Just overall it is a different kind of breathing it is not inflamed or like breathing through cement or anything like what it is pre transplant.
I wish you the best and I hope that your evaluation goes well and that if you choose transplant that you do not wait too long.
Lindsey