just wondering after transplant. i know there can be difficulties but after a year or two or more how come tranplant people still die, is there a high risk of getting cancer and other diseases due to the low immune system. Sorry for the grim question but just wondering cause i may be up for transplant in the near future
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transplants and death
- Thread starter anonymous
- Start date
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There are a variety of complications. Accute rejection, chronic rejection. Immunosuppressants wearing down your system. Non-compliance with treatments, medications, everything else. Catching a virus with the low immune system. Sure there are risks. But hey walking out your door is a risk in itself nowadays. You could pick up a virus, get hit by a bus... tons of other things. Quite honestly for some people without a transplant they're facing death anyway. So it's death with no chance at life, or a chance at life with the risk of death.
<blockquote>Quote<br><hr>So it's death with no chance at life, or a chance at life with the risk of death. <hr></blockquote>
That is the MOST eloquent and concise summary of the whole thing that I've ever read. Mind if I rip it off for my webpage? I'll give you credit. <img src="i/expressions/face-icon-small-smile.gif" border="0">
That is the MOST eloquent and concise summary of the whole thing that I've ever read. Mind if I rip it off for my webpage? I'll give you credit. <img src="i/expressions/face-icon-small-smile.gif" border="0">
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I don't mind <img src="i/expressions/face-icon-small-wink.gif" border="0"> use it wisely
The reason for deaths post tx, further down the road is that you are still at risk for infection, or rejection. Cancer is possible. But I think I read infection is the number one reason people die post tx.
Chronic rejection or BOS is something that still mystifies doctors.. as to why the small airways scar over and then you lose lung function post tx.
I am post lung tx 8 years, and doing great.. I say that and some people might look at me odd... Because I am in chronic rejection, but my tx team gave me the best drugs for me... and I am now stable and doing fine.
Joanne Schum
luckylungsforjo@aol.com
Chronic rejection or BOS is something that still mystifies doctors.. as to why the small airways scar over and then you lose lung function post tx.
I am post lung tx 8 years, and doing great.. I say that and some people might look at me odd... Because I am in chronic rejection, but my tx team gave me the best drugs for me... and I am now stable and doing fine.
Joanne Schum
luckylungsforjo@aol.com
Joanne
I know that you are on high doses of meds that make your immune system lower at first after tx, but I thought that they reduce those meds with time, post tx, and I guess I assumed that as they lower those doses that your immune system has a chance to rebuild, thus making infection not such a threat as it was immediately after tx, not true?
I know that you are on high doses of meds that make your immune system lower at first after tx, but I thought that they reduce those meds with time, post tx, and I guess I assumed that as they lower those doses that your immune system has a chance to rebuild, thus making infection not such a threat as it was immediately after tx, not true?
Hi
Yes, you are more immune suppressed after tx and then over time they do lower the meds.
But, even right after tx, you do have an immune system. It is not wiped out. They don't want you to catch stuff, so they have to find that level so you are not catching stuff.
Over time when they reduce the medicine, yes your immune system is not as much at risk, but it is still lowered.
In my 8 years with new lungs, I have had 4 colds... and they lasted no longer than a week. I do take precautions, and don't put myself at risk. But it is nothing major that I do to make sure I don't catch stuff. My days are filled with many outings, and I do some adventurous stuff. I will be going camping in a couple days. I fly, participate in sports, and participate in the transplant games, I work, I volunteer, I do a lot of speaking in public, the list goes on and on. I never had a list pre tx..... it is nice to have a list like this.
Hope that helped. We are always at risk , but yes, after the first year a bit less of a risk.
Joanne
Yes, you are more immune suppressed after tx and then over time they do lower the meds.
But, even right after tx, you do have an immune system. It is not wiped out. They don't want you to catch stuff, so they have to find that level so you are not catching stuff.
Over time when they reduce the medicine, yes your immune system is not as much at risk, but it is still lowered.
In my 8 years with new lungs, I have had 4 colds... and they lasted no longer than a week. I do take precautions, and don't put myself at risk. But it is nothing major that I do to make sure I don't catch stuff. My days are filled with many outings, and I do some adventurous stuff. I will be going camping in a couple days. I fly, participate in sports, and participate in the transplant games, I work, I volunteer, I do a lot of speaking in public, the list goes on and on. I never had a list pre tx..... it is nice to have a list like this.
Hope that helped. We are always at risk , but yes, after the first year a bit less of a risk.
Joanne
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Guest
To the anonymous poster.
The immune system, you will always have one even though it is repressed. The reason why they will never allow it to become totally back to the way it was before tranpslant is because your body sees these new lungs as a foreign object. They will fight it, rejecting it, because a foreign object inside the body is view in the same light as a germ. It must be destroyed. Because of the newness of the lungs in your body immediately after transplant your body will work full force to rid your body of them. That's why a person is on such high doses of immunosuppressents. Over months as your body gets used to the lungs the immunosuppressents may or may not be tapered down. The only thing that was changed for me was the prednisone dosage, which is an immune suppressor. Because your new lungs will always be viewed as a foreign object by your body you will always be on anti-rejection medication. Hopefully one day they'll be able to fix that some way but until then we have a whole lot of medications to prevent rejection which are unfortunately immunosuppressents. Which means that yes your body's immune system will be low, but once you're out of the danger zone and they've tapered down your medications it will be [should be] stable but low. That's why you're warned to stay away from sick people. It's the price you pay for transplant but definitely worth it.
The immune system, you will always have one even though it is repressed. The reason why they will never allow it to become totally back to the way it was before tranpslant is because your body sees these new lungs as a foreign object. They will fight it, rejecting it, because a foreign object inside the body is view in the same light as a germ. It must be destroyed. Because of the newness of the lungs in your body immediately after transplant your body will work full force to rid your body of them. That's why a person is on such high doses of immunosuppressents. Over months as your body gets used to the lungs the immunosuppressents may or may not be tapered down. The only thing that was changed for me was the prednisone dosage, which is an immune suppressor. Because your new lungs will always be viewed as a foreign object by your body you will always be on anti-rejection medication. Hopefully one day they'll be able to fix that some way but until then we have a whole lot of medications to prevent rejection which are unfortunately immunosuppressents. Which means that yes your body's immune system will be low, but once you're out of the danger zone and they've tapered down your medications it will be [should be] stable but low. That's why you're warned to stay away from sick people. It's the price you pay for transplant but definitely worth it.
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Guest
To the anonymous poster, why ask the question directly to Joanne? I'm sure she has tons of advice but why not make that an 'anybody who's had a transplant' question, there's more people than just her on this board that's recieved a transplant and everybody's experience is somewhat/vastly different. Not to put you off from asking questions, I'm just curious.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>The reason for deaths post tx, further down the road is that you are still at risk for infection, or rejection. Cancer is possible. But I think I read infection is the number one reason people die post tx.
The reason I asked Joanne specifically was because of her statement that she had read where it is believed that infection is the number one reason people die post tx and I guess since she made that statement I would address her directly. No offense was meant to anyone else. <img src="i/expressions/face-icon-small-cool.gif" border="0">
But thank you to everyone that responded!
The reason I asked Joanne specifically was because of her statement that she had read where it is believed that infection is the number one reason people die post tx and I guess since she made that statement I would address her directly. No offense was meant to anyone else. <img src="i/expressions/face-icon-small-cool.gif" border="0">
But thank you to everyone that responded!
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hmm since Joanne hasn't replied I might as well add my $.02.
Scars, mine healed quite well actually. Given the fact that it's been over 2 years... it's pretty cool, it is really hard to tell that it's there now. I have <a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/deviation/13662571/">a pic from about a year ago</a>, when it was still noticable but even then it wasn't really bad. As for stitches, didn't need them, when I woke up I was plastered in tape. After it starts scabbing the tape fell off and everything went on healing right. Scars... they vary from person to person, place to place, doctor to doctor honestly.
Scars, mine healed quite well actually. Given the fact that it's been over 2 years... it's pretty cool, it is really hard to tell that it's there now. I have <a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/deviation/13662571/">a pic from about a year ago</a>, when it was still noticable but even then it wasn't really bad. As for stitches, didn't need them, when I woke up I was plastered in tape. After it starts scabbing the tape fell off and everything went on healing right. Scars... they vary from person to person, place to place, doctor to doctor honestly.
This may sound corny, but thanks, Candice for sharing your scar picture. As someone on the verge of transplant (FEV1-30%), I've been seriously checking into all aspects of transplant.
In all actuality, no one would ever see that scar unless it was your 'significant other'.
I bet you can even wear a bikini & it's not noticable? I don't think I would even mind if it was noticable, if it meant that I had a new lease on life!
In all actuality, no one would ever see that scar unless it was your 'significant other'.
I bet you can even wear a bikini & it's not noticable? I don't think I would even mind if it was noticable, if it meant that I had a new lease on life!
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It's understandable to check into everything. <img src="i/expressions/face-icon-small-smile.gif" border="0">
And yes you can even wear a bikini without anybody noticing. Well the suit that I have the very tips show but it's not like anybody notices especially since you're not walking around with your hands in the air all the time. I of course do have a few other scars but at the rate I'm going I don't really care if they're visible. I think 'oh that little itty bitty thing, you should see that sucker that I have across my chest' not that anybody notices anyway <img src="i/expressions/face-icon-small-smile.gif" border="0"> If you have anymore questions feel free to ask. If I take another TX scar pic [which I may very well do especially since that one was taken so long ago] I'll post the link here.
And yes you can even wear a bikini without anybody noticing. Well the suit that I have the very tips show but it's not like anybody notices especially since you're not walking around with your hands in the air all the time. I of course do have a few other scars but at the rate I'm going I don't really care if they're visible. I think 'oh that little itty bitty thing, you should see that sucker that I have across my chest' not that anybody notices anyway <img src="i/expressions/face-icon-small-smile.gif" border="0"> If you have anymore questions feel free to ask. If I take another TX scar pic [which I may very well do especially since that one was taken so long ago] I'll post the link here.
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Yeah that's exactly the way I try to explain it, it's even better now, a lot more pale [matches my skin tone (which is pale <img src="i/expressions/face-icon-small-tongue.gif" border="0">)] And yes I had just turned 17 when I got my transplant. Not even 2 full weeks after my birthday. What a present!
My scar is barely noticeable.... I think my chest tube scars are more visable.
Wearing a bikini is possible... I don't mind anyone seeing my scar, but it is nice to know for others to hear that the cut is right under the breasts and the bikini top covers it perfectly.
Wanted to also be sure you realize when I say people die of "infection" I do not mean an external infection, like the scar contracting an infection... but infection meaning a lung infection or other internal infection.
Joanne Schum
Wearing a bikini is possible... I don't mind anyone seeing my scar, but it is nice to know for others to hear that the cut is right under the breasts and the bikini top covers it perfectly.
Wanted to also be sure you realize when I say people die of "infection" I do not mean an external infection, like the scar contracting an infection... but infection meaning a lung infection or other internal infection.
Joanne Schum
Hi. Thanks for the picture of the scar! I am nearing my transplant - I will be moving to be close to my transplant center in a couple of months to wait and I am freaking out!! But seeing how small the scar is really helped. I was imagining something far worse. Can I ask, how far up does the scar go - does it go up to your armpits or just stay around the bottom of your breasts? It's really a trivial question, it should be the least of my worries!! Also, do they break any bones when the do the surgery?
Thank You!!
Martha CF, 30
Thank You!!
Martha CF, 30