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Wanting a Transplant
- Thread starter Cojean62
- Start date
CoJean - you said in your last post that you don't have much problem with your lungs, but your doctors said a transplant would help?
That is a little confusing to me, since lung transplants are generally a last resort to prolonging your life in response to severe lung disease. If your lung disease isn't advanced, then I would not think you'd be a candidate for transplant at this time. CF patients do not just get lung transplants at any old time...you generally need to be on oxygen with PFT's in the 30% range (generally - I've heard of a few exceptions).
I still recommend you become educated about transplants so you understand what it's all about and when the timing might be right for you. Here is a little bit about lung transplants from CFF: http://www.cff.org/treatments/LungTransplantation/
That is a little confusing to me, since lung transplants are generally a last resort to prolonging your life in response to severe lung disease. If your lung disease isn't advanced, then I would not think you'd be a candidate for transplant at this time. CF patients do not just get lung transplants at any old time...you generally need to be on oxygen with PFT's in the 30% range (generally - I've heard of a few exceptions).
I still recommend you become educated about transplants so you understand what it's all about and when the timing might be right for you. Here is a little bit about lung transplants from CFF: http://www.cff.org/treatments/LungTransplantation/
CoJean - you said in your last post that you don't have much problem with your lungs, but your doctors said a transplant would help?
That is a little confusing to me, since lung transplants are generally a last resort to prolonging your life in response to severe lung disease. If your lung disease isn't advanced, then I would not think you'd be a candidate for transplant at this time. CF patients do not just get lung transplants at any old time...you generally need to be on oxygen with PFT's in the 30% range (generally - I've heard of a few exceptions).
I still recommend you become educated about transplants so you understand what it's all about and when the timing might be right for you. Here is a little bit about lung transplants from CFF: http://www.cff.org/treatments/LungTransplantation/
That is a little confusing to me, since lung transplants are generally a last resort to prolonging your life in response to severe lung disease. If your lung disease isn't advanced, then I would not think you'd be a candidate for transplant at this time. CF patients do not just get lung transplants at any old time...you generally need to be on oxygen with PFT's in the 30% range (generally - I've heard of a few exceptions).
I still recommend you become educated about transplants so you understand what it's all about and when the timing might be right for you. Here is a little bit about lung transplants from CFF: http://www.cff.org/treatments/LungTransplantation/
CoJean - you said in your last post that you don't have much problem with your lungs, but your doctors said a transplant would help?
<br />
<br />That is a little confusing to me, since lung transplants are generally a last resort to prolonging your life in response to severe lung disease. If your lung disease isn't advanced, then I would not think you'd be a candidate for transplant at this time. CF patients do not just get lung transplants at any old time...you generally need to be on oxygen with PFT's in the 30% range (generally - I've heard of a few exceptions).
<br />
<br />I still recommend you become educated about transplants so you understand what it's all about and when the timing might be right for you. Here is a little bit about lung transplants from CFF: http://www.cff.org/treatments/LungTransplantation/
<br />
<br />That is a little confusing to me, since lung transplants are generally a last resort to prolonging your life in response to severe lung disease. If your lung disease isn't advanced, then I would not think you'd be a candidate for transplant at this time. CF patients do not just get lung transplants at any old time...you generally need to be on oxygen with PFT's in the 30% range (generally - I've heard of a few exceptions).
<br />
<br />I still recommend you become educated about transplants so you understand what it's all about and when the timing might be right for you. Here is a little bit about lung transplants from CFF: http://www.cff.org/treatments/LungTransplantation/
coltsfan715
New member
I think the real question here is .. what are you at - what is your FEV1 and your FVC? How often are you in the hospital? What bugs do you culture? What do your oxygen saturations look like? There are a lot of reasons that a doc would say bring up a transplant. Maybe they are thinking it would be good to just get to know a team or to look into it now before you are really sick, so you can decide whether it is something you would want or not without the "end of life" stresses. Maybe they are just wanting you to think about it because it will help to know what you want and if you want that they can get things started, not that you would be listed right now but just to introduce you to the process.
As for the whole is transplant worth it - to me yes - would I do it again - Hell yes. Was it hard - yes. Impossible - no. My wait - 6 weeks. One set of problems for another - yea I guess but with the post transplant set of problems I am able to do a lot more than I was with the pre transplant set of problems.
Even people that have had a really hard time post transplant have told me they would do it again. I also think though that you have to be prepared for whatever may come at you and realize that it isn't necessarily going to be a fixall. There will be issues - but they are what you make of them.
Good Luck with the decision.
Lindsey
As for the whole is transplant worth it - to me yes - would I do it again - Hell yes. Was it hard - yes. Impossible - no. My wait - 6 weeks. One set of problems for another - yea I guess but with the post transplant set of problems I am able to do a lot more than I was with the pre transplant set of problems.
Even people that have had a really hard time post transplant have told me they would do it again. I also think though that you have to be prepared for whatever may come at you and realize that it isn't necessarily going to be a fixall. There will be issues - but they are what you make of them.
Good Luck with the decision.
Lindsey
coltsfan715
New member
I think the real question here is .. what are you at - what is your FEV1 and your FVC? How often are you in the hospital? What bugs do you culture? What do your oxygen saturations look like? There are a lot of reasons that a doc would say bring up a transplant. Maybe they are thinking it would be good to just get to know a team or to look into it now before you are really sick, so you can decide whether it is something you would want or not without the "end of life" stresses. Maybe they are just wanting you to think about it because it will help to know what you want and if you want that they can get things started, not that you would be listed right now but just to introduce you to the process.
As for the whole is transplant worth it - to me yes - would I do it again - Hell yes. Was it hard - yes. Impossible - no. My wait - 6 weeks. One set of problems for another - yea I guess but with the post transplant set of problems I am able to do a lot more than I was with the pre transplant set of problems.
Even people that have had a really hard time post transplant have told me they would do it again. I also think though that you have to be prepared for whatever may come at you and realize that it isn't necessarily going to be a fixall. There will be issues - but they are what you make of them.
Good Luck with the decision.
Lindsey
As for the whole is transplant worth it - to me yes - would I do it again - Hell yes. Was it hard - yes. Impossible - no. My wait - 6 weeks. One set of problems for another - yea I guess but with the post transplant set of problems I am able to do a lot more than I was with the pre transplant set of problems.
Even people that have had a really hard time post transplant have told me they would do it again. I also think though that you have to be prepared for whatever may come at you and realize that it isn't necessarily going to be a fixall. There will be issues - but they are what you make of them.
Good Luck with the decision.
Lindsey
coltsfan715
New member
I think the real question here is .. what are you at - what is your FEV1 and your FVC? How often are you in the hospital? What bugs do you culture? What do your oxygen saturations look like? There are a lot of reasons that a doc would say bring up a transplant. Maybe they are thinking it would be good to just get to know a team or to look into it now before you are really sick, so you can decide whether it is something you would want or not without the "end of life" stresses. Maybe they are just wanting you to think about it because it will help to know what you want and if you want that they can get things started, not that you would be listed right now but just to introduce you to the process.
<br />
<br />As for the whole is transplant worth it - to me yes - would I do it again - Hell yes. Was it hard - yes. Impossible - no. My wait - 6 weeks. One set of problems for another - yea I guess but with the post transplant set of problems I am able to do a lot more than I was with the pre transplant set of problems.
<br />
<br />Even people that have had a really hard time post transplant have told me they would do it again. I also think though that you have to be prepared for whatever may come at you and realize that it isn't necessarily going to be a fixall. There will be issues - but they are what you make of them.
<br />
<br />Good Luck with the decision.
<br />
<br />Lindsey
<br />
<br />As for the whole is transplant worth it - to me yes - would I do it again - Hell yes. Was it hard - yes. Impossible - no. My wait - 6 weeks. One set of problems for another - yea I guess but with the post transplant set of problems I am able to do a lot more than I was with the pre transplant set of problems.
<br />
<br />Even people that have had a really hard time post transplant have told me they would do it again. I also think though that you have to be prepared for whatever may come at you and realize that it isn't necessarily going to be a fixall. There will be issues - but they are what you make of them.
<br />
<br />Good Luck with the decision.
<br />
<br />Lindsey
I really don't know guys. He told my parents about it when I was in surgery last time. No one will explain anything to me because they said I'm not ready! Thing is my lungs' health took a nosedive and now I'm close to losing this battle. I have no energy for doing activities including just taking a simple breath! I guess he's just trying to prevent the troubles before they actually begin. I'm no where were I am supposed to be in the charts, I guess I just need a little push.
I really don't know guys. He told my parents about it when I was in surgery last time. No one will explain anything to me because they said I'm not ready! Thing is my lungs' health took a nosedive and now I'm close to losing this battle. I have no energy for doing activities including just taking a simple breath! I guess he's just trying to prevent the troubles before they actually begin. I'm no where were I am supposed to be in the charts, I guess I just need a little push.
I really don't know guys. He told my parents about it when I was in surgery last time. No one will explain anything to me because they said I'm not ready! Thing is my lungs' health took a nosedive and now I'm close to losing this battle. I have no energy for doing activities including just taking a simple breath! I guess he's just trying to prevent the troubles before they actually begin. I'm no where were I am supposed to be in the charts, I guess I just need a little push.
I was put on the transplant list2 and 1/2 yrs ago while I was still relatively healthy and working a fulltime job. My spcecialist told me it is better to get on the list early so they can always monitor me, and should I go downhill quickly at anytime for whatever reason - it will be all the better for me since:
a) The transplant team doctors and nurses will be familiar with me already.
b). They will have records of my health progress for the last x months/years.
c). I will have the time to mentally and physically prepare myself.
d). My family and friends will also have time to mentally prepare themselves, nothing is sudden and new to them.
Recently I have been a little worse for wear, have cut back my working hours to 4 days a week now, feel more tired and breathless these days, but all in all I can say: I think I agree with my doctor. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The earlier on the list, the better.
a) The transplant team doctors and nurses will be familiar with me already.
b). They will have records of my health progress for the last x months/years.
c). I will have the time to mentally and physically prepare myself.
d). My family and friends will also have time to mentally prepare themselves, nothing is sudden and new to them.
Recently I have been a little worse for wear, have cut back my working hours to 4 days a week now, feel more tired and breathless these days, but all in all I can say: I think I agree with my doctor. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The earlier on the list, the better.