Chronic Rejection

C

CountryGirl

New member
Are any of you dealing with chronic rejection? I'm finding it really difficult to handle it.

Any ideas on what to do? It seems like there aren't that many people who've gone through it and had a second tx, the two people I do know were in entirely different situations. Im relatively healthy compared to how they were when they got called.

I'm just so worried Im never gonna get that call and I know I havent been waiting that long but it still seems like a lifetime. I horseback ride to keep my mind off things and it seems to help a little but I can only ride so much before I get short of breath, and I dont have my own horse so I go somewhere for lessons.

Ideas? Anyone? Help!

Waiting the second time is so much worse than waiting the first time.
 
C

CountryGirl

New member
Are any of you dealing with chronic rejection? I'm finding it really difficult to handle it.

Any ideas on what to do? It seems like there aren't that many people who've gone through it and had a second tx, the two people I do know were in entirely different situations. Im relatively healthy compared to how they were when they got called.

I'm just so worried Im never gonna get that call and I know I havent been waiting that long but it still seems like a lifetime. I horseback ride to keep my mind off things and it seems to help a little but I can only ride so much before I get short of breath, and I dont have my own horse so I go somewhere for lessons.

Ideas? Anyone? Help!

Waiting the second time is so much worse than waiting the first time.
 
C

CountryGirl

New member
Are any of you dealing with chronic rejection? I'm finding it really difficult to handle it.
<br />
<br />Any ideas on what to do? It seems like there aren't that many people who've gone through it and had a second tx, the two people I do know were in entirely different situations. Im relatively healthy compared to how they were when they got called.
<br />
<br />I'm just so worried Im never gonna get that call and I know I havent been waiting that long but it still seems like a lifetime. I horseback ride to keep my mind off things and it seems to help a little but I can only ride so much before I get short of breath, and I dont have my own horse so I go somewhere for lessons.
<br />
<br />Ideas? Anyone? Help!
<br />
<br />Waiting the second time is so much worse than waiting the first time.
 
C

coltsfan715

New member
Anna

So sorry to read this. I do not know what you are dealing with, but wasn't sure if you used Facebook and if so if you were friends with Lo Deitrich. I bring her up because she had chronic rejection and had her second double. She would likely be a great person for you to talk too. The only people I know with chronic rejection were either older and were not relisted due to age or are younger and have not reached the point of needing another transplant just yet because the docs were able to stabilize her pfts.

I hope that you get your second shot soon and that in the meantime you can find someone to talk to that has been through what you are dealing with and can help you through it.

Lindsey
 
C

coltsfan715

New member
Anna

So sorry to read this. I do not know what you are dealing with, but wasn't sure if you used Facebook and if so if you were friends with Lo Deitrich. I bring her up because she had chronic rejection and had her second double. She would likely be a great person for you to talk too. The only people I know with chronic rejection were either older and were not relisted due to age or are younger and have not reached the point of needing another transplant just yet because the docs were able to stabilize her pfts.

I hope that you get your second shot soon and that in the meantime you can find someone to talk to that has been through what you are dealing with and can help you through it.

Lindsey
 
C

coltsfan715

New member
Anna
<br />
<br />So sorry to read this. I do not know what you are dealing with, but wasn't sure if you used Facebook and if so if you were friends with Lo Deitrich. I bring her up because she had chronic rejection and had her second double. She would likely be a great person for you to talk too. The only people I know with chronic rejection were either older and were not relisted due to age or are younger and have not reached the point of needing another transplant just yet because the docs were able to stabilize her pfts.
<br />
<br />I hope that you get your second shot soon and that in the meantime you can find someone to talk to that has been through what you are dealing with and can help you through it.
<br />
<br />Lindsey
 
E

EnergyGal

New member
Hi Anna

Glad that you wrote in. I just happen to be browsing this forum today and saw your message.

Remember each person has a different experience. It is important to convince yourself that your second transplant will be a big success and you will take the necessary steps to achieve all that you have to do to keep yourself fit and healthy enough to and to take the best care of yourself.

I had a difficult second transplant post op but an extremely successful experience once I left the hospital. My experinece was similar to Lo Dietrich as we both had to have a trach.


If you train hard to stay as fit as you can, this will ensure a much better outcome. Nutrtion and exercise and of course your rest is super important. I believe the emotional ups and downs are most difficult. Have you found anything to help you in this area?

There are many others who had second transplants but I cannot think of their names as this moment.

Please email as I hardly visit this website
transplantbuddies@gmail.com
Best to you
Rise'
 
E

EnergyGal

New member
Hi Anna

Glad that you wrote in. I just happen to be browsing this forum today and saw your message.

Remember each person has a different experience. It is important to convince yourself that your second transplant will be a big success and you will take the necessary steps to achieve all that you have to do to keep yourself fit and healthy enough to and to take the best care of yourself.

I had a difficult second transplant post op but an extremely successful experience once I left the hospital. My experinece was similar to Lo Dietrich as we both had to have a trach.


If you train hard to stay as fit as you can, this will ensure a much better outcome. Nutrtion and exercise and of course your rest is super important. I believe the emotional ups and downs are most difficult. Have you found anything to help you in this area?

There are many others who had second transplants but I cannot think of their names as this moment.

Please email as I hardly visit this website
transplantbuddies@gmail.com
Best to you
Rise'
 
E

EnergyGal

New member
Hi Anna
<br />
<br />Glad that you wrote in. I just happen to be browsing this forum today and saw your message.
<br />
<br />Remember each person has a different experience. It is important to convince yourself that your second transplant will be a big success and you will take the necessary steps to achieve all that you have to do to keep yourself fit and healthy enough to and to take the best care of yourself.
<br />
<br />I had a difficult second transplant post op but an extremely successful experience once I left the hospital. My experinece was similar to Lo Dietrich as we both had to have a trach.
<br />
<br />
<br />If you train hard to stay as fit as you can, this will ensure a much better outcome. Nutrtion and exercise and of course your rest is super important. I believe the emotional ups and downs are most difficult. Have you found anything to help you in this area?
<br />
<br />There are many others who had second transplants but I cannot think of their names as this moment.
<br />
<br />Please email as I hardly visit this website
<br />transplantbuddies@gmail.com
<br />Best to you
<br />Rise'
 
K

kholleman

New member
Country Girl, So sorry to hear you're dealing with chronic rejection - it can definitely be frustrating and frightening.

I'd suggest you call your transplant center and ask your coordinator or transplant social worker if they have mentor program. They'll match you with someone who has dealt with what you're going through and can answer your questions and talk it out with you. (If you happen to go to Barnes-Jewish, the person to call is Rebecca Bathon at 314-362-6127). A mentor can really help you put your mind at ease.

I've met Lo Dietrich, and she is very cool. She'd be great to contact. There are other folks out there, too, who have been through the same thing and would be glad to share. Don't be afraid to reach out.

Hang in there.
 
K

kholleman

New member
Country Girl, So sorry to hear you're dealing with chronic rejection - it can definitely be frustrating and frightening.

I'd suggest you call your transplant center and ask your coordinator or transplant social worker if they have mentor program. They'll match you with someone who has dealt with what you're going through and can answer your questions and talk it out with you. (If you happen to go to Barnes-Jewish, the person to call is Rebecca Bathon at 314-362-6127). A mentor can really help you put your mind at ease.

I've met Lo Dietrich, and she is very cool. She'd be great to contact. There are other folks out there, too, who have been through the same thing and would be glad to share. Don't be afraid to reach out.

Hang in there.
 
K

kholleman

New member
Country Girl, So sorry to hear you're dealing with chronic rejection - it can definitely be frustrating and frightening.
<br />
<br />I'd suggest you call your transplant center and ask your coordinator or transplant social worker if they have mentor program. They'll match you with someone who has dealt with what you're going through and can answer your questions and talk it out with you. (If you happen to go to Barnes-Jewish, the person to call is Rebecca Bathon at 314-362-6127). A mentor can really help you put your mind at ease.
<br />
<br />I've met Lo Dietrich, and she is very cool. She'd be great to contact. There are other folks out there, too, who have been through the same thing and would be glad to share. Don't be afraid to reach out.
<br />
<br />Hang in there.
 
T

TwistedTanya

New member
I have a friend who just had his second transplant last year in Aug. and he was out in 11 days and has been doing great! Waiting is really tough but you know CF people usually get picked first for transplants since they have better chances, are usually younger, and didn't cause their problem...like with smoking. Hang in there! At least you can still do something. When I got my call for my TX, I had been on a feeding tube for a month and not allowed to eat or drink ANYTHING! I could only keep my mouth moist and suck on candy occassionally. That had to last until I got a stomach surgery done for reflux which happened a month after my transplant. I was miserable! Oh and I had to sleep in our guest bed at an angle to help from aspirating into my lungs. So be glad you can at least eat while you wait, hehe. Hang in there and good luck!
 
T

TwistedTanya

New member
I have a friend who just had his second transplant last year in Aug. and he was out in 11 days and has been doing great! Waiting is really tough but you know CF people usually get picked first for transplants since they have better chances, are usually younger, and didn't cause their problem...like with smoking. Hang in there! At least you can still do something. When I got my call for my TX, I had been on a feeding tube for a month and not allowed to eat or drink ANYTHING! I could only keep my mouth moist and suck on candy occassionally. That had to last until I got a stomach surgery done for reflux which happened a month after my transplant. I was miserable! Oh and I had to sleep in our guest bed at an angle to help from aspirating into my lungs. So be glad you can at least eat while you wait, hehe. Hang in there and good luck!
 
T

TwistedTanya

New member
I have a friend who just had his second transplant last year in Aug. and he was out in 11 days and has been doing great! Waiting is really tough but you know CF people usually get picked first for transplants since they have better chances, are usually younger, and didn't cause their problem...like with smoking. Hang in there! At least you can still do something. When I got my call for my TX, I had been on a feeding tube for a month and not allowed to eat or drink ANYTHING! I could only keep my mouth moist and suck on candy occassionally. That had to last until I got a stomach surgery done for reflux which happened a month after my transplant. I was miserable! Oh and I had to sleep in our guest bed at an angle to help from aspirating into my lungs. So be glad you can at least eat while you wait, hehe. Hang in there and good luck!
 
T

tarheel

Guest
This is along this thread- but have any of you heard of a new (I guess investigational) technique that I think they're calling chimerisim? It's where, from the same donor, you get two parts- the lungs and something else like bone marrow. Supposedly in a lot of cases the cells actually formed one cohesive body instead of being two teams in competition with eachother. - this concept was in a handbook I got at the transplant clinic in UNC but I really want to ask them about it. I'm wondering if anyone else has heard of this or had a procedure like this. Apparently the risk of chronic rejection goes from 30% (or thereabouts) to 10%. Thanks for your feedback.
 
T

tarheel

Guest
This is along this thread- but have any of you heard of a new (I guess investigational) technique that I think they're calling chimerisim? It's where, from the same donor, you get two parts- the lungs and something else like bone marrow. Supposedly in a lot of cases the cells actually formed one cohesive body instead of being two teams in competition with eachother. - this concept was in a handbook I got at the transplant clinic in UNC but I really want to ask them about it. I'm wondering if anyone else has heard of this or had a procedure like this. Apparently the risk of chronic rejection goes from 30% (or thereabouts) to 10%. Thanks for your feedback.
 
T

tarheel

Guest
This is along this thread- but have any of you heard of a new (I guess investigational) technique that I think they're calling chimerisim? It's where, from the same donor, you get two parts- the lungs and something else like bone marrow. Supposedly in a lot of cases the cells actually formed one cohesive body instead of being two teams in competition with eachother. - this concept was in a handbook I got at the transplant clinic in UNC but I really want to ask them about it. I'm wondering if anyone else has heard of this or had a procedure like this. Apparently the risk of chronic rejection goes from 30% (or thereabouts) to 10%. Thanks for your feedback.
 
K

karismom

New member
Hi Anna,

The second time IS so much harder than the first in some ways Kari got the call much faster the second time tho as she was near death... she only could get one lung tx'd due to concerns over bleeding out... just try and keep busy it will come when you least expect it!!! say HI to your mom for me!!!

Lisa
 
K

karismom

New member
Hi Anna,

The second time IS so much harder than the first in some ways Kari got the call much faster the second time tho as she was near death... she only could get one lung tx'd due to concerns over bleeding out... just try and keep busy it will come when you least expect it!!! say HI to your mom for me!!!

Lisa
 
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