You probably won't get called if you are in your 30's because other people with lower pft's will have higher lung allocation scores. When Mike was originally listed he was at about 30%, didn't use O2 at all. We went for long walks all the time, with a few breaks. Shortly after that, he started requiring O2 at night, then sporadically throughout the day, then eventually all day. His pfts have steadily dropped since then. He is very happy that he went through the eval process while he still had the energy. When he went through it again to get listed in Cleveland, it was much more difficult, but luckily they accepted a lot of what he had already done in Boston. There is nothing to be afraid of as far as getting evaluated. It is a great opportunity to have all of your questions answered. And you DO NOT have to be listed just because you are evaluated... that is totally your choice. And it is not held against you.
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transplant
- Thread starter jfarel
- Start date
You probably won't get called if you are in your 30's because other people with lower pft's will have higher lung allocation scores. When Mike was originally listed he was at about 30%, didn't use O2 at all. We went for long walks all the time, with a few breaks. Shortly after that, he started requiring O2 at night, then sporadically throughout the day, then eventually all day. His pfts have steadily dropped since then. He is very happy that he went through the eval process while he still had the energy. When he went through it again to get listed in Cleveland, it was much more difficult, but luckily they accepted a lot of what he had already done in Boston. There is nothing to be afraid of as far as getting evaluated. It is a great opportunity to have all of your questions answered. And you DO NOT have to be listed just because you are evaluated... that is totally your choice. And it is not held against you.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilith</b></i>
Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...</end quote></div>
Yeah, I know I don't feel good. But I don't feel like crap either. I know what its like to be sick, I was pretty stinking sick in the fall. But right now, I don't feel that bad despite my low pft's. Two months ago, I felt well enough to jog short distances and my energy was great.
When I was teen and a child I competed at a high level in sports so believe me I know what I'm missing and hurts knowing I can't do it now. At the same time, I want to get the most out of the lungs I have since transplants are no guarantee. I'm not on o2, Thank the Lord, and until then I'm not going to think about getting transplated, however, I'll be getting evaluated probably very soon though unless my pft's jump back into the 30's next appointment.
Thanks so much for the feedback everyone.
Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...</end quote></div>
Yeah, I know I don't feel good. But I don't feel like crap either. I know what its like to be sick, I was pretty stinking sick in the fall. But right now, I don't feel that bad despite my low pft's. Two months ago, I felt well enough to jog short distances and my energy was great.
When I was teen and a child I competed at a high level in sports so believe me I know what I'm missing and hurts knowing I can't do it now. At the same time, I want to get the most out of the lungs I have since transplants are no guarantee. I'm not on o2, Thank the Lord, and until then I'm not going to think about getting transplated, however, I'll be getting evaluated probably very soon though unless my pft's jump back into the 30's next appointment.
Thanks so much for the feedback everyone.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilith</b></i>
Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...</end quote></div>
Yeah, I know I don't feel good. But I don't feel like crap either. I know what its like to be sick, I was pretty stinking sick in the fall. But right now, I don't feel that bad despite my low pft's. Two months ago, I felt well enough to jog short distances and my energy was great.
When I was teen and a child I competed at a high level in sports so believe me I know what I'm missing and hurts knowing I can't do it now. At the same time, I want to get the most out of the lungs I have since transplants are no guarantee. I'm not on o2, Thank the Lord, and until then I'm not going to think about getting transplated, however, I'll be getting evaluated probably very soon though unless my pft's jump back into the 30's next appointment.
Thanks so much for the feedback everyone.
Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...</end quote></div>
Yeah, I know I don't feel good. But I don't feel like crap either. I know what its like to be sick, I was pretty stinking sick in the fall. But right now, I don't feel that bad despite my low pft's. Two months ago, I felt well enough to jog short distances and my energy was great.
When I was teen and a child I competed at a high level in sports so believe me I know what I'm missing and hurts knowing I can't do it now. At the same time, I want to get the most out of the lungs I have since transplants are no guarantee. I'm not on o2, Thank the Lord, and until then I'm not going to think about getting transplated, however, I'll be getting evaluated probably very soon though unless my pft's jump back into the 30's next appointment.
Thanks so much for the feedback everyone.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilith</b></i>
Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...</end quote></div>
Yeah, I know I don't feel good. But I don't feel like crap either. I know what its like to be sick, I was pretty stinking sick in the fall. But right now, I don't feel that bad despite my low pft's. Two months ago, I felt well enough to jog short distances and my energy was great.
When I was teen and a child I competed at a high level in sports so believe me I know what I'm missing and hurts knowing I can't do it now. At the same time, I want to get the most out of the lungs I have since transplants are no guarantee. I'm not on o2, Thank the Lord, and until then I'm not going to think about getting transplated, however, I'll be getting evaluated probably very soon though unless my pft's jump back into the 30's next appointment.
Thanks so much for the feedback everyone.
Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...</end quote></div>
Yeah, I know I don't feel good. But I don't feel like crap either. I know what its like to be sick, I was pretty stinking sick in the fall. But right now, I don't feel that bad despite my low pft's. Two months ago, I felt well enough to jog short distances and my energy was great.
When I was teen and a child I competed at a high level in sports so believe me I know what I'm missing and hurts knowing I can't do it now. At the same time, I want to get the most out of the lungs I have since transplants are no guarantee. I'm not on o2, Thank the Lord, and until then I'm not going to think about getting transplated, however, I'll be getting evaluated probably very soon though unless my pft's jump back into the 30's next appointment.
Thanks so much for the feedback everyone.
You can be listed at more than one center as long as each center is in a different region. I believe the surgeons have only four to six hours to get the lungs out of the donor and into you. YES there is time limit and lungs stay within their own region. There is no sharing with lungs with our current technology. Perhaps in the future with newer machines, there will be sharing of organs from region to region. They are currently working on these new machines.
Since you feel good, keep up the great work and hopefully it will be years away before you are transplanted.
In 1993 I had an FEV 1 of 21 percent. I was not transplanted until 1996. I took such great care of myself that I was able to maintain my health for a long time. I was also lucky that I did not have any major flu's until I caught it pretty darn bad. I was not on the transplant list yet. That was scary. If I was on the transplant list, I would not have worried so much. So if you can get listed, they can always leave you as inactive status. You will feel comfortable that you are on the list in case you need your transplant sooner than expected.
Since you feel good, keep up the great work and hopefully it will be years away before you are transplanted.
In 1993 I had an FEV 1 of 21 percent. I was not transplanted until 1996. I took such great care of myself that I was able to maintain my health for a long time. I was also lucky that I did not have any major flu's until I caught it pretty darn bad. I was not on the transplant list yet. That was scary. If I was on the transplant list, I would not have worried so much. So if you can get listed, they can always leave you as inactive status. You will feel comfortable that you are on the list in case you need your transplant sooner than expected.
You can be listed at more than one center as long as each center is in a different region. I believe the surgeons have only four to six hours to get the lungs out of the donor and into you. YES there is time limit and lungs stay within their own region. There is no sharing with lungs with our current technology. Perhaps in the future with newer machines, there will be sharing of organs from region to region. They are currently working on these new machines.
Since you feel good, keep up the great work and hopefully it will be years away before you are transplanted.
In 1993 I had an FEV 1 of 21 percent. I was not transplanted until 1996. I took such great care of myself that I was able to maintain my health for a long time. I was also lucky that I did not have any major flu's until I caught it pretty darn bad. I was not on the transplant list yet. That was scary. If I was on the transplant list, I would not have worried so much. So if you can get listed, they can always leave you as inactive status. You will feel comfortable that you are on the list in case you need your transplant sooner than expected.
Since you feel good, keep up the great work and hopefully it will be years away before you are transplanted.
In 1993 I had an FEV 1 of 21 percent. I was not transplanted until 1996. I took such great care of myself that I was able to maintain my health for a long time. I was also lucky that I did not have any major flu's until I caught it pretty darn bad. I was not on the transplant list yet. That was scary. If I was on the transplant list, I would not have worried so much. So if you can get listed, they can always leave you as inactive status. You will feel comfortable that you are on the list in case you need your transplant sooner than expected.
You can be listed at more than one center as long as each center is in a different region. I believe the surgeons have only four to six hours to get the lungs out of the donor and into you. YES there is time limit and lungs stay within their own region. There is no sharing with lungs with our current technology. Perhaps in the future with newer machines, there will be sharing of organs from region to region. They are currently working on these new machines.
Since you feel good, keep up the great work and hopefully it will be years away before you are transplanted.
In 1993 I had an FEV 1 of 21 percent. I was not transplanted until 1996. I took such great care of myself that I was able to maintain my health for a long time. I was also lucky that I did not have any major flu's until I caught it pretty darn bad. I was not on the transplant list yet. That was scary. If I was on the transplant list, I would not have worried so much. So if you can get listed, they can always leave you as inactive status. You will feel comfortable that you are on the list in case you need your transplant sooner than expected.
Since you feel good, keep up the great work and hopefully it will be years away before you are transplanted.
In 1993 I had an FEV 1 of 21 percent. I was not transplanted until 1996. I took such great care of myself that I was able to maintain my health for a long time. I was also lucky that I did not have any major flu's until I caught it pretty darn bad. I was not on the transplant list yet. That was scary. If I was on the transplant list, I would not have worried so much. So if you can get listed, they can always leave you as inactive status. You will feel comfortable that you are on the list in case you need your transplant sooner than expected.