beautifulsoul
Super Moderator
hey my name is Amber and I am almost 14. I am on the list for a lung transplant and still making up my mind weather I want one or not. I hear that some people reject. that makes me scared. what can you expect?
advise on lung transplants
- Thread starter beautifulsoul
- Start date
Emily65Roses
New member
Hey I've never had a lung transplant, but I just wanted to give you this to think about.... Sure, some people reject. But you're either going to die... or you're going to get a transplant and maybe live, maybe die. If you're guaranteed to die without it, why not try and hope for the best? That's the way I like to think about it. *shrug*
I
IG
Guest
Actually it's quite common for transplant patients to have rejection within the first six month after transplant ::gasp, shock, horror::
I was one of those people who didn't think it'd happen to them. My transplant went well [not counting a few trivial mishaps] so I was home free. Or so I thought. Anyway rejection is quite normal for a transplant patient to have. Your body is still adjusting to the lungs, the medications, and various other stressors placed on your body. Honestly it's surprising that some people don't go through rejection. Mine was very easy to treat, just have me on i.v.'s for a week and change my medication around and there was no signs of rejection afterwards. That's the good thing about these clinics, they are so diligent they catch these things before they have a chance to become anything major.
Of course that was only describing acute rejection, which is the most common form of rejection.
There is another rejection which is 'chronic' rejection. This is the type of rejection that you can't get rid of. Now I'm taking this right out of my transplant notebook. 'Chronic rejection, also called "bronchiolitis obliterans", is different from the acute form in that it involves the airways more so than the tissue. The small airways of the lung become plugged with scar tissue resulting in decreased air flow. The cause is unknown at this time, and not well understood. This condition is irreversible with no adequate treatment except, perhaps, re-transplantation. As this conditioin progresses, more than likely you will become oxygen dependent and your exercise capacity will gradually decline.'
I've heared that chronic rejection is not common though.
Honestly if you were to expect anything I'd expect acute rejection. The signs of rejection fever, shortness of breath, cough, lethargy. I didn't have any symptoms but that was because my rejection was so slight it hardly registered. They caught it with a bronch and biopsy. So rejection is fairly easy to manage, or it was in my case, and I've never heard of anybody having chronic rejection though I know it happens. Anyway if you have any more questions feel free to ask.
I also agree with what Emily said.
I was one of those people who didn't think it'd happen to them. My transplant went well [not counting a few trivial mishaps] so I was home free. Or so I thought. Anyway rejection is quite normal for a transplant patient to have. Your body is still adjusting to the lungs, the medications, and various other stressors placed on your body. Honestly it's surprising that some people don't go through rejection. Mine was very easy to treat, just have me on i.v.'s for a week and change my medication around and there was no signs of rejection afterwards. That's the good thing about these clinics, they are so diligent they catch these things before they have a chance to become anything major.
Of course that was only describing acute rejection, which is the most common form of rejection.
There is another rejection which is 'chronic' rejection. This is the type of rejection that you can't get rid of. Now I'm taking this right out of my transplant notebook. 'Chronic rejection, also called "bronchiolitis obliterans", is different from the acute form in that it involves the airways more so than the tissue. The small airways of the lung become plugged with scar tissue resulting in decreased air flow. The cause is unknown at this time, and not well understood. This condition is irreversible with no adequate treatment except, perhaps, re-transplantation. As this conditioin progresses, more than likely you will become oxygen dependent and your exercise capacity will gradually decline.'
I've heared that chronic rejection is not common though.
Honestly if you were to expect anything I'd expect acute rejection. The signs of rejection fever, shortness of breath, cough, lethargy. I didn't have any symptoms but that was because my rejection was so slight it hardly registered. They caught it with a bronch and biopsy. So rejection is fairly easy to manage, or it was in my case, and I've never heard of anybody having chronic rejection though I know it happens. Anyway if you have any more questions feel free to ask.
I also agree with what Emily said.
intheIMAGEofHim
New member
I am more than likely i going to be put on the list for a lung transplant sooner or later. I have also been kind of scared about the whole thing...I have had a liver transplant but the lungs just seem to be more of a big deal. Is it a real big deal & is it harder to go through?
senatorgraham
New member
I have not been through a liver transplant so I don't know if it is harder. I imagine that having a liver transplant comes with its own set of challenges. As for scary, everyone deals with these things in their own way. For me, it was just one more thing that had to be done, like tune ups, etc. I do not mean to sound arrogant, I am not, merely for me, personally, it was just something else that had to be done, or I would die, so I got the transplant. No second thoughts and no regrets. I am so thankful to be able to breathe again. I am happy to be helpful to anyone who has questions about lung transplants. I had a Bi-lateral lung transplant in Dec 2002. If you have any any additional questions feel free to post here or e-mail me senatorgraham@yahoo.com
Sincerely,
"Senatorgraham"
"My friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickinson
Sincerely,
"Senatorgraham"
"My friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickinson
beautifulsoul
Super Moderator
well i wasnt sure if i wanted one because I didnt know anything about them yet so they put me on the list and said they can always take me off If I change my mind. I have made up my mind now that I am ready for one. but I just wanted more advise while Im waiting.
beautifulsoul
Super Moderator
[No message]
I
IG
Guest
Honestly when you go through any type of transplant it's going to be hard. I imagine what you're feeling is what I was feeling as well. The lungs are vital, yikes, scary stuff, and they want to replace them ?!?! They're crazy.
Is it a big deal, sure... any kind of transplant is.
Harder to go through? No clue haven't had [and seriously don't plan] any other one of my organs replaced.
Transplant itself is hard to go through theIMAGEofhim, as I'm sure you've found out. Each, I'm sure, has it's own set of problems.
All I can really say is that it goes by fast.
And some advice beautifulsoul... make a decision [not soon] but when you're ready...
I was in that exact situation..
I was put on the list at 13 with the option of 'making up my mind' later, but being on the list now 'just in case' well.... 3 years down the road I get woken up in the hospital 'they've got a pair of lungs for you' and I couldn't exactly say a last minute no [I'm sure I could have but my grandmother would have killed me] I'm just saying... going into this whole ordeal with your mind not made up is really tough. I don't regret it, never will because it turned out well, but it came with a serious amount of doubts/fears... more so because I wasn't sure I was doing the right thing.
If you ever want to talk about tx IM me [I'm not the best conversationalist but I do try to answer questions] or email me.
That applies to anybody.
[the email can be found in my profile in case you don't know]
Is it a big deal, sure... any kind of transplant is.
Harder to go through? No clue haven't had [and seriously don't plan] any other one of my organs replaced.
Transplant itself is hard to go through theIMAGEofhim, as I'm sure you've found out. Each, I'm sure, has it's own set of problems.
All I can really say is that it goes by fast.
And some advice beautifulsoul... make a decision [not soon] but when you're ready...
I was in that exact situation..
I was put on the list at 13 with the option of 'making up my mind' later, but being on the list now 'just in case' well.... 3 years down the road I get woken up in the hospital 'they've got a pair of lungs for you' and I couldn't exactly say a last minute no [I'm sure I could have but my grandmother would have killed me] I'm just saying... going into this whole ordeal with your mind not made up is really tough. I don't regret it, never will because it turned out well, but it came with a serious amount of doubts/fears... more so because I wasn't sure I was doing the right thing.
If you ever want to talk about tx IM me [I'm not the best conversationalist but I do try to answer questions] or email me.
That applies to anybody.
[the email can be found in my profile in case you don't know]