OK, My son and I have been referred from our CF specialist to a transplant specialist and they are recommeding a transplant for his lungs. I have so many questions that they answered but I am having trouble believing them. Meanwhile my 15 year old son does not want a transplant because he believes that his life will end in a few years anyway if he has the transplant or the chances of his dying goes up with the procedure. We are both scared. I am trying so hard to look for answers for him and focus on what is right in front of me. Here are my questions and I am going to post this in the transplant forum as well. 1) Is it possible to get another transplant after the first one? I thought that this could only happen once and after these lungs are out grown or worn out or whatever, you were done. I am being told that it is possible to have more than one. 2) Is there a way to get accurate data on success rate for juvenile transplants and not have all the older people in the data? 3) Cleveland Clinc vs. Texas Childrens (in Houston) for a second opinion, which one is better do you think? and 4) If there is anyone out there who has had this experience (ie someone who has had a lung transplant as a teenager), would you be willing to talk to my son about this experience and let him learn more and get his questions answered? I thank all of you for your prayers and support. This site has had some good people on it who have helped when we have had problems before.
Transplant questions and teenagers
- Thread starter jimiv
- Start date
beautifulsoul
Super Moderator
Hi Jimiv-
I don't have complete answers to all of your questions but I'll do the best I can with answering what I do know.
I had a double lung transplant almost 6 years ago when I was 15 years old. After a few bumps in the road during the first year, I'm alive as ever right now
I hate to agree with your son but when I was 15 I wasn't too thrilled about the lung transplant option either. I had the same thoughts he did about my life ending anyways. But, after I turned my thoughts around for a while I realized "what do I have to lose?" Meaning: I might as well go for it if my life is ending anyway. I thought I was going to die either way. I know, everyone reading this is probably thinking what terrible thoughts those were. Well, not really for a 15 year old. Maybe it will help your son to know that the actual lung transplant operation survival rate is pretty high around 90% or higher. Anyway for your questions...
1) Yes, it's possible to get a second transplant after you've already had one. It all depends on what went wrong with the first one. Did you catch an infection? is it rejection? There are many factors to consider when you are in need of a second one. I'm not too knowledgable since I've never had a second transplant.
2) I have actually asked my doctor your second question before I had my transplant and he wasn't able to give me information on children vs. adults. You would probably need to ask the center that you will be going to. The hospital itself should have that information but may not be able to tell you the statistics for the entire nation.
3) I live in Ohio so Cleveland was an option for me but my family chose Pittsburgh Children's because AT THE TIME their success rates were higher and overall hospital was better. The company my dad worked for also had an office in PA. So, we factored that in as well. I think Cleveland is about as equal to Pittsburgh right now. I have no info about Texas.
4) I would be happy to talk to your son if he is willing to talk to me. I'm sure I can answer his questions. I was 15 when I was transplanted like I already mentioned. You may private message me for contact info.
God Bless
Hugs to you
(L)
I don't have complete answers to all of your questions but I'll do the best I can with answering what I do know.
I had a double lung transplant almost 6 years ago when I was 15 years old. After a few bumps in the road during the first year, I'm alive as ever right now
I hate to agree with your son but when I was 15 I wasn't too thrilled about the lung transplant option either. I had the same thoughts he did about my life ending anyways. But, after I turned my thoughts around for a while I realized "what do I have to lose?" Meaning: I might as well go for it if my life is ending anyway. I thought I was going to die either way. I know, everyone reading this is probably thinking what terrible thoughts those were. Well, not really for a 15 year old. Maybe it will help your son to know that the actual lung transplant operation survival rate is pretty high around 90% or higher. Anyway for your questions...1) Yes, it's possible to get a second transplant after you've already had one. It all depends on what went wrong with the first one. Did you catch an infection? is it rejection? There are many factors to consider when you are in need of a second one. I'm not too knowledgable since I've never had a second transplant.
2) I have actually asked my doctor your second question before I had my transplant and he wasn't able to give me information on children vs. adults. You would probably need to ask the center that you will be going to. The hospital itself should have that information but may not be able to tell you the statistics for the entire nation.
3) I live in Ohio so Cleveland was an option for me but my family chose Pittsburgh Children's because AT THE TIME their success rates were higher and overall hospital was better. The company my dad worked for also had an office in PA. So, we factored that in as well. I think Cleveland is about as equal to Pittsburgh right now. I have no info about Texas.
4) I would be happy to talk to your son if he is willing to talk to me. I'm sure I can answer his questions. I was 15 when I was transplanted like I already mentioned. You may private message me for contact info.
God Bless
Hugs to you
(L)
1) Is it possible to get another transplant after the first one? I thought that this could only happen once and after these lungs are out grown or worn out or whatever, you were done. I am being told that it is possible to have more than one.
It is possible, but very few transplant centers will offer a second double lung transplant. My wife is a Duke patient and is currently waiting for her second, but even Duke only performs about a dozen second double lung tx a year, and those who are candidates are few and far in between.
2) Is there a way to get accurate data on success rate for juvenile transplants and not have all the older people in the data?
I have not come across any data that shows the success rate for young patients only, but I can tell you from experience that the older folks definitely skew the data. Duke is very open to older patients who have been denied by other centers because of their age, and they most certainly tend to have more post-transplant setbacks than younger patients. In our nearly six years being involved with the transplant program at Duke over the span of two transplants, I have yet to know any CF patient who hasn't done incredibly well with a transplant...that's not to say there haven't been CF patients who haven't done well, I just don't know of them. Young CF men especially seem to bounce back incredibly well, as most of them seem to be very driven and relatively fit and healthy outside of their CF related issues.
3) Cleveland Clinc vs. Texas Childrens (in Houston) for a second opinion, which one is better do you think?
I only have experience with Duke, so I can't answer that question.
4) If there is anyone out there who has had this experience (ie someone who has had a lung transplant as a teenager), would you be willing to talk to my son about this experience and let him learn more and get his questions answered? I thank all of you for your prayers and support.
My wife was 25 for her first, but I know she'd be more than happy to connect with your son and be an encouragement.
"Meanwhile my 15 year old son does not want a transplant because he believes that his life will end in a few years anyway if he has the transplant or the chances of his dying goes up with the procedure."
I would also like to respond to this. Transplant is trading one disease for another, and in the vast majority of cases (as I said above), tx dramatically increases both the quality and quantity of life. A responsible tx center will only transplant a patient if he/she is in that window of opportunity in which their illness has progressed to the point that their life is in danger but they are still "healthy" enough to survive the surgery and have a solid life afterwards. There are no guarantees, but as I mentioned above, CF patients generally respond incredibly well to tx. I will say, however, if your son goes into the tx process without being fully committed, the risks of a bad experience dramatically increase. Everybody is scared about transplant, and everybody experiences anxiety during the process, so please don't misunderstand what I'm saying. The first and probably most important question my wife was asked by the tx team when beginning the evaluation for both of her transplants was "Is this what you really want to do/are you fully committed to this?" Any responsible tx center will refuse to even consider transplanting any patient who might appear to be uncommitted and non-compliant.
I would be more than happy to answer any more questions you might have as a caregiver.
Nate
It is possible, but very few transplant centers will offer a second double lung transplant. My wife is a Duke patient and is currently waiting for her second, but even Duke only performs about a dozen second double lung tx a year, and those who are candidates are few and far in between.
2) Is there a way to get accurate data on success rate for juvenile transplants and not have all the older people in the data?
I have not come across any data that shows the success rate for young patients only, but I can tell you from experience that the older folks definitely skew the data. Duke is very open to older patients who have been denied by other centers because of their age, and they most certainly tend to have more post-transplant setbacks than younger patients. In our nearly six years being involved with the transplant program at Duke over the span of two transplants, I have yet to know any CF patient who hasn't done incredibly well with a transplant...that's not to say there haven't been CF patients who haven't done well, I just don't know of them. Young CF men especially seem to bounce back incredibly well, as most of them seem to be very driven and relatively fit and healthy outside of their CF related issues.
3) Cleveland Clinc vs. Texas Childrens (in Houston) for a second opinion, which one is better do you think?
I only have experience with Duke, so I can't answer that question.
4) If there is anyone out there who has had this experience (ie someone who has had a lung transplant as a teenager), would you be willing to talk to my son about this experience and let him learn more and get his questions answered? I thank all of you for your prayers and support.
My wife was 25 for her first, but I know she'd be more than happy to connect with your son and be an encouragement.
"Meanwhile my 15 year old son does not want a transplant because he believes that his life will end in a few years anyway if he has the transplant or the chances of his dying goes up with the procedure."
I would also like to respond to this. Transplant is trading one disease for another, and in the vast majority of cases (as I said above), tx dramatically increases both the quality and quantity of life. A responsible tx center will only transplant a patient if he/she is in that window of opportunity in which their illness has progressed to the point that their life is in danger but they are still "healthy" enough to survive the surgery and have a solid life afterwards. There are no guarantees, but as I mentioned above, CF patients generally respond incredibly well to tx. I will say, however, if your son goes into the tx process without being fully committed, the risks of a bad experience dramatically increase. Everybody is scared about transplant, and everybody experiences anxiety during the process, so please don't misunderstand what I'm saying. The first and probably most important question my wife was asked by the tx team when beginning the evaluation for both of her transplants was "Is this what you really want to do/are you fully committed to this?" Any responsible tx center will refuse to even consider transplanting any patient who might appear to be uncommitted and non-compliant.
I would be more than happy to answer any more questions you might have as a caregiver.
Nate