Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 I'm not a candidate & have not experienced this, but I do belong to a pt education group at which both a transplant specialist and a transplant pt spoke. The specialist said that they want people to go ahead & qualify for the list while they're doing ok; however, the way transplants are allocated now is based on most urgent need. When a person has an exacerbation & becomes very ill, that's not the time to try to qualilfy. He said that, at his site, they generally transplant only 1 lung; I don't know if that's typical or not. Their reasoning is that they can help more people & the fatality rate is actually better with 1 lung vs 2. The transplant pt was very happy that he'd had his transplant. He said that he had gone to the transplant center & was there for about a week prior to transplant; he said the stay at the center prior to transplant depends on who needs the transplant most, i.e., your stay may be shorter or longer than others actively awaiting transplant at the center. He said that during the pre-surgery time, the transplant staff had him exercising as much as he could, etc., to maximize his physical health. After transplant, he and his wife stayed at the transplant center for a specific length of time. His days were filled with exercise and coaching on how to care for himself once he got home. He said he was taking about 20-30 medications every day, including steriods. He had to keep a log of his meds and how he felt, his weight, diet, etc. At home, in addition to the meds & the log, he had to exercise & he talked to someone at the transplant site daily, the purpose being to spot any irregularities before they became major issues. He said he became a steriod induced diabetic during this time, but that was expected to clear once he stopped the steriods. He looked good when I saw him & was even beginning to return to work part- time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Bonnie, Thanks for this post also. The question of 1 vs. 2 is very interesting to me. I was thinking about this the other day. I wonder how they decide. Also, I kinda get that survival rate might be better, but also seems like if you're gonna reject you're gonna reject. Also, it's been said that transplant is like trading one disease for another, but if you have one good one and one fibrosis one do you go from one disease to two. Do you still struggle w/ the fibrosis one? I know however that you can live off one good lung, like w/ lung cancer... very complex... Kerry IPF '01 S. IN > > I'm not a candidate & have not experienced this, but I do belong to a > pt education group at which both a transplant specialist and a > transplant pt spoke. The specialist said that they want people to go > ahead & qualify for the list while they're doing ok; however, the way > transplants are allocated now is based on most urgent need. When a > person has an exacerbation & becomes very ill, that's not the time to > try to qualilfy. He said that, at his site, they generally transplant > only 1 lung; I don't know if that's typical or not. Their reasoning > is that they can help more people & the fatality rate is actually > better with 1 lung vs 2. > > The transplant pt was very happy that he'd had his transplant. He > said that he had gone to the transplant center & was there for about a > week prior to transplant; he said the stay at the center prior to > transplant depends on who needs the transplant most, i.e., your stay > may be shorter or longer than others actively awaiting transplant at > the center. He said that during the pre-surgery time, the transplant > staff had him exercising as much as he could, etc., to maximize his > physical health. After transplant, he and his wife stayed at the > transplant center for a specific length of time. His days were filled > with exercise and coaching on how to care for himself once he got > home. He said he was taking about 20-30 medications every day, > including steriods. He had to keep a log of his meds and how he felt, > his weight, diet, etc. At home, in addition to the meds & the log, he > had to exercise & he talked to someone at the transplant site daily, > the purpose being to spot any irregularities before they became major > issues. He said he became a steriod induced diabetic during this > time, but that was expected to clear once he stopped the steriods. He > looked good when I saw him & was even beginning to return to work part- > time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Bonnie, Thanks for this post also. The question of 1 vs. 2 is very interesting to me. I was thinking about this the other day. I wonder how they decide. Also, I kinda get that survival rate might be better, but also seems like if you're gonna reject you're gonna reject. Also, it's been said that transplant is like trading one disease for another, but if you have one good one and one fibrosis one do you go from one disease to two. Do you still struggle w/ the fibrosis one? I know however that you can live off one good lung, like w/ lung cancer... very complex... Kerry IPF '01 S. IN > > I'm not a candidate & have not experienced this, but I do belong to a > pt education group at which both a transplant specialist and a > transplant pt spoke. The specialist said that they want people to go > ahead & qualify for the list while they're doing ok; however, the way > transplants are allocated now is based on most urgent need. When a > person has an exacerbation & becomes very ill, that's not the time to > try to qualilfy. He said that, at his site, they generally transplant > only 1 lung; I don't know if that's typical or not. Their reasoning > is that they can help more people & the fatality rate is actually > better with 1 lung vs 2. > > The transplant pt was very happy that he'd had his transplant. He > said that he had gone to the transplant center & was there for about a > week prior to transplant; he said the stay at the center prior to > transplant depends on who needs the transplant most, i.e., your stay > may be shorter or longer than others actively awaiting transplant at > the center. He said that during the pre-surgery time, the transplant > staff had him exercising as much as he could, etc., to maximize his > physical health. After transplant, he and his wife stayed at the > transplant center for a specific length of time. His days were filled > with exercise and coaching on how to care for himself once he got > home. He said he was taking about 20-30 medications every day, > including steriods. He had to keep a log of his meds and how he felt, > his weight, diet, etc. At home, in addition to the meds & the log, he > had to exercise & he talked to someone at the transplant site daily, > the purpose being to spot any irregularities before they became major > issues. He said he became a steriod induced diabetic during this > time, but that was expected to clear once he stopped the steriods. He > looked good when I saw him & was even beginning to return to work part- > time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2007 Report Share Posted August 12, 2007 Bonnie, Thanks for this post also. The question of 1 vs. 2 is very interesting to me. I was thinking about this the other day. I wonder how they decide. Also, I kinda get that survival rate might be better, but also seems like if you're gonna reject you're gonna reject. Also, it's been said that transplant is like trading one disease for another, but if you have one good one and one fibrosis one do you go from one disease to two. Do you still struggle w/ the fibrosis one? I know however that you can live off one good lung, like w/ lung cancer... very complex... Kerry IPF '01 S. IN > > I'm not a candidate & have not experienced this, but I do belong to a > pt education group at which both a transplant specialist and a > transplant pt spoke. The specialist said that they want people to go > ahead & qualify for the list while they're doing ok; however, the way > transplants are allocated now is based on most urgent need. When a > person has an exacerbation & becomes very ill, that's not the time to > try to qualilfy. He said that, at his site, they generally transplant > only 1 lung; I don't know if that's typical or not. Their reasoning > is that they can help more people & the fatality rate is actually > better with 1 lung vs 2. > > The transplant pt was very happy that he'd had his transplant. He > said that he had gone to the transplant center & was there for about a > week prior to transplant; he said the stay at the center prior to > transplant depends on who needs the transplant most, i.e., your stay > may be shorter or longer than others actively awaiting transplant at > the center. He said that during the pre-surgery time, the transplant > staff had him exercising as much as he could, etc., to maximize his > physical health. After transplant, he and his wife stayed at the > transplant center for a specific length of time. His days were filled > with exercise and coaching on how to care for himself once he got > home. He said he was taking about 20-30 medications every day, > including steriods. He had to keep a log of his meds and how he felt, > his weight, diet, etc. At home, in addition to the meds & the log, he > had to exercise & he talked to someone at the transplant site daily, > the purpose being to spot any irregularities before they became major > issues. He said he became a steriod induced diabetic during this > time, but that was expected to clear once he stopped the steriods. He > looked good when I saw him & was even beginning to return to work part- > time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi Marie, My husband Greg had a single lung transplant on 2/19/07. He will celebrate his 6 months out anniversary this coming Sunday. He's active, back in PT, and enjoying life. He has told me many times that if he had it to do again, he would. He can now breathe. Yes, there were rough times. You have to go through a lot of testing, inside and out. But it was worth it. We have just found out that his native lung is now barely functioning. It scares me to even think about how he would be right now without the new lung. Of course there can be complications. Greg had one of the most severe complications possible...hyperammonemia. But his doctors learned a lot from his case. All transplant patients in Ohio State U. Medical center are now tested for ammonia in their blood systems on a regular basis. Even difficulties can have positive outcomes. Do what is right for you. Each case is different, each person has to work through the negatives and positives, and decide how to proceed. Only you can decide if a transplant is in your future. But if you can, do it while you are strong. If you have any questions, feel free to ask. Greg & I will try to answer. Deb & Greg S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi Marie, My husband Greg had a single lung transplant on 2/19/07. He will celebrate his 6 months out anniversary this coming Sunday. He's active, back in PT, and enjoying life. He has told me many times that if he had it to do again, he would. He can now breathe. Yes, there were rough times. You have to go through a lot of testing, inside and out. But it was worth it. We have just found out that his native lung is now barely functioning. It scares me to even think about how he would be right now without the new lung. Of course there can be complications. Greg had one of the most severe complications possible...hyperammonemia. But his doctors learned a lot from his case. All transplant patients in Ohio State U. Medical center are now tested for ammonia in their blood systems on a regular basis. Even difficulties can have positive outcomes. Do what is right for you. Each case is different, each person has to work through the negatives and positives, and decide how to proceed. Only you can decide if a transplant is in your future. But if you can, do it while you are strong. If you have any questions, feel free to ask. Greg & I will try to answer. Deb & Greg S Quote Link to comment Share on other sites More sharing options...
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