Again, to echo everyone, yes this is a very personal choice. But remember it's not like your lungs are going to have this shelf life with a specific expiration date. It really truly is dependent on the person. And again, people with transplants die of other causes as well. This is also a very new and advanced procedure in the medical world. Medications are treatments for side effects get better literally every day. The new wave of transplant generations haven't even been out of there transplants for 5 years yet. I'm coming up to my 5 year anniversary in November.
Yes, there are bumps in the road. But I would NOT trade this for anything. I am currently dealing with PTLD but it's getting treated and I'm just being watched a little bit more closely and have been going to the doctor once a week for treatments. Now that the treatment is done, I don't have to go back for a month. And then if all is clear back to my normal 3 month schedule.
Debihilitating? I disagree strongly. I went from 24/7 oxygen, coughing all time, sleeping sitting up, and mere 72 pounds (yes, even with a feeding tube); to a healthy adult. And yes, despite the bumps I consider myself extremely healhty. I work full time, live on my own in the city, finished college, travel every where, and just ran a half marathon (that's 13.1 miles for those keeping count). I can eat, I don't have a feeding tube anymore, I can keep up with my peers, I don't have to worry about stairs, or where I'm going to sit if I'm going out. Yeah, so life to say the least is not debihilitating. And yes, I know that it can be with transplant if things don't go smoothly and as planned, but I think end stage CF is about as debihilitating as it gets.
This again is a very personal choice though. You have to be ready for it and very wiling to fight and be diligent about your care. If something happens post transplant you can't really delay care. Calling the center right away, taking all of your meds, being in tune with any changes in your body and acting on everything accordingly will always help with your post transplant care.
Good Luck!
Yes, there are bumps in the road. But I would NOT trade this for anything. I am currently dealing with PTLD but it's getting treated and I'm just being watched a little bit more closely and have been going to the doctor once a week for treatments. Now that the treatment is done, I don't have to go back for a month. And then if all is clear back to my normal 3 month schedule.
Debihilitating? I disagree strongly. I went from 24/7 oxygen, coughing all time, sleeping sitting up, and mere 72 pounds (yes, even with a feeding tube); to a healthy adult. And yes, despite the bumps I consider myself extremely healhty. I work full time, live on my own in the city, finished college, travel every where, and just ran a half marathon (that's 13.1 miles for those keeping count). I can eat, I don't have a feeding tube anymore, I can keep up with my peers, I don't have to worry about stairs, or where I'm going to sit if I'm going out. Yeah, so life to say the least is not debihilitating. And yes, I know that it can be with transplant if things don't go smoothly and as planned, but I think end stage CF is about as debihilitating as it gets.
This again is a very personal choice though. You have to be ready for it and very wiling to fight and be diligent about your care. If something happens post transplant you can't really delay care. Calling the center right away, taking all of your meds, being in tune with any changes in your body and acting on everything accordingly will always help with your post transplant care.
Good Luck!