high risk donor

CountryGirl · Sep 9, 2009

Hey Annie,

I will definitely tell you its not all rainbows but I would do it all over again, including the setbacks in a snap.
Right now I am going through chronic rejection, and its not picnic but you take that chance. I did very well my first year, made great progress after tx and got to go back home two months after I got it. Last october I got a terrible case of acute rejection, A4, the worst it can be, and I never fully recovered. I got over the acute rejection but it turned into chronic, or bronchiolitis obliterans.
I also got a case of Aspefillus after transplant but they were able to treat it and I also got MAC, and now have been negative for it for a few months. I am doing well besides the rejection.

I was able to go to Australia for Christmas this last year and even though my pfts had dropped to about 59% I was still able to out snorkel my sister and parents. Being near transplant again I will take the risk I took the first time. And its great not having to cough even though Im getting short of breath more easily again Im not coughing and I definitely love that.

CountryGirl · Sep 9, 2009

Hey Annie,

I will definitely tell you its not all rainbows but I would do it all over again, including the setbacks in a snap.
Right now I am going through chronic rejection, and its not picnic but you take that chance. I did very well my first year, made great progress after tx and got to go back home two months after I got it. Last october I got a terrible case of acute rejection, A4, the worst it can be, and I never fully recovered. I got over the acute rejection but it turned into chronic, or bronchiolitis obliterans.
I also got a case of Aspefillus after transplant but they were able to treat it and I also got MAC, and now have been negative for it for a few months. I am doing well besides the rejection.

I was able to go to Australia for Christmas this last year and even though my pfts had dropped to about 59% I was still able to out snorkel my sister and parents. Being near transplant again I will take the risk I took the first time. And its great not having to cough even though Im getting short of breath more easily again Im not coughing and I definitely love that.

CountryGirl · Sep 9, 2009

Hey Annie,

I will definitely tell you its not all rainbows but I would do it all over again, including the setbacks in a snap.
Right now I am going through chronic rejection, and its not picnic but you take that chance. I did very well my first year, made great progress after tx and got to go back home two months after I got it. Last october I got a terrible case of acute rejection, A4, the worst it can be, and I never fully recovered. I got over the acute rejection but it turned into chronic, or bronchiolitis obliterans.
I also got a case of Aspefillus after transplant but they were able to treat it and I also got MAC, and now have been negative for it for a few months. I am doing well besides the rejection.

I was able to go to Australia for Christmas this last year and even though my pfts had dropped to about 59% I was still able to out snorkel my sister and parents. Being near transplant again I will take the risk I took the first time. And its great not having to cough even though Im getting short of breath more easily again Im not coughing and I definitely love that.

CountryGirl · Sep 9, 2009

Hey Annie,

I will definitely tell you its not all rainbows but I would do it all over again, including the setbacks in a snap.
Right now I am going through chronic rejection, and its not picnic but you take that chance. I did very well my first year, made great progress after tx and got to go back home two months after I got it. Last october I got a terrible case of acute rejection, A4, the worst it can be, and I never fully recovered. I got over the acute rejection but it turned into chronic, or bronchiolitis obliterans.
I also got a case of Aspefillus after transplant but they were able to treat it and I also got MAC, and now have been negative for it for a few months. I am doing well besides the rejection.

I was able to go to Australia for Christmas this last year and even though my pfts had dropped to about 59% I was still able to out snorkel my sister and parents. Being near transplant again I will take the risk I took the first time. And its great not having to cough even though Im getting short of breath more easily again Im not coughing and I definitely love that.

CountryGirl · Sep 9, 2009

Hey Annie,
 
 I will definitely tell you its not all rainbows but I would do it all over again, including the setbacks in a snap.
 Right now I am going through chronic rejection, and its not picnic but you take that chance. I did very well my first year, made great progress after tx and got to go back home two months after I got it. Last october I got a terrible case of acute rejection, A4, the worst it can be, and I never fully recovered. I got over the acute rejection but it turned into chronic, or bronchiolitis obliterans.
 I also got a case of Aspefillus after transplant but they were able to treat it and I also got MAC, and now have been negative for it for a few months. I am doing well besides the rejection.
 
 I was able to go to Australia for Christmas this last year and even though my pfts had dropped to about 59% I was still able to out snorkel my sister and parents. Being near transplant again I will take the risk I took the first time. And its great not having to cough even though Im getting short of breath more easily again Im not coughing and I definitely love that.

arche4life · Sep 9, 2009

Hi Anna,

You I think are the first person who has actually been honest with me about the entire transplant thing. How it IS NOT a walk in the park. I am terrified right now that after I get the transplant I'm just going to deteriorate, and that I'll end up in bed for the rest of my life. But on the other hand I am hopeful about the transplant. I kind of feel like I'm in a waiting pattern right now between just being sick all the time and getting the transplant. It's frustrating, I've been sick for a while and I would definitely say I am over it. I can't imagine what it would be like not coughing, it's wierd to think about it. Are you able to go to school or work while in rejection? I'm worried about ending up completely disabled. I am still going to school, but I have to admit, it is my brain pushing my body to go to class and do my work. What is your life like, if you don't mind me asking. Hope this message finds you well,
xoxo
Annie

arche4life · Sep 9, 2009

Hi Anna,

You I think are the first person who has actually been honest with me about the entire transplant thing. How it IS NOT a walk in the park. I am terrified right now that after I get the transplant I'm just going to deteriorate, and that I'll end up in bed for the rest of my life. But on the other hand I am hopeful about the transplant. I kind of feel like I'm in a waiting pattern right now between just being sick all the time and getting the transplant. It's frustrating, I've been sick for a while and I would definitely say I am over it. I can't imagine what it would be like not coughing, it's wierd to think about it. Are you able to go to school or work while in rejection? I'm worried about ending up completely disabled. I am still going to school, but I have to admit, it is my brain pushing my body to go to class and do my work. What is your life like, if you don't mind me asking. Hope this message finds you well,
xoxo
Annie

arche4life · Sep 9, 2009

Hi Anna,

You I think are the first person who has actually been honest with me about the entire transplant thing. How it IS NOT a walk in the park. I am terrified right now that after I get the transplant I'm just going to deteriorate, and that I'll end up in bed for the rest of my life. But on the other hand I am hopeful about the transplant. I kind of feel like I'm in a waiting pattern right now between just being sick all the time and getting the transplant. It's frustrating, I've been sick for a while and I would definitely say I am over it. I can't imagine what it would be like not coughing, it's wierd to think about it. Are you able to go to school or work while in rejection? I'm worried about ending up completely disabled. I am still going to school, but I have to admit, it is my brain pushing my body to go to class and do my work. What is your life like, if you don't mind me asking. Hope this message finds you well,
xoxo
Annie

arche4life · Sep 9, 2009

Hi Anna,

You I think are the first person who has actually been honest with me about the entire transplant thing. How it IS NOT a walk in the park. I am terrified right now that after I get the transplant I'm just going to deteriorate, and that I'll end up in bed for the rest of my life. But on the other hand I am hopeful about the transplant. I kind of feel like I'm in a waiting pattern right now between just being sick all the time and getting the transplant. It's frustrating, I've been sick for a while and I would definitely say I am over it. I can't imagine what it would be like not coughing, it's wierd to think about it. Are you able to go to school or work while in rejection? I'm worried about ending up completely disabled. I am still going to school, but I have to admit, it is my brain pushing my body to go to class and do my work. What is your life like, if you don't mind me asking. Hope this message finds you well,
xoxo
Annie

arche4life · Sep 9, 2009

Hi Anna,
 
 You I think are the first person who has actually been honest with me about the entire transplant thing. How it IS NOT a walk in the park. I am terrified right now that after I get the transplant I'm just going to deteriorate, and that I'll end up in bed for the rest of my life. But on the other hand I am hopeful about the transplant. I kind of feel like I'm in a waiting pattern right now between just being sick all the time and getting the transplant. It's frustrating, I've been sick for a while and I would definitely say I am over it. I can't imagine what it would be like not coughing, it's wierd to think about it. Are you able to go to school or work while in rejection? I'm worried about ending up completely disabled. I am still going to school, but I have to admit, it is my brain pushing my body to go to class and do my work. What is your life like, if you don't mind me asking. Hope this message finds you well,
 xoxo
 Annie

coltsfan715 · Sep 11, 2009

I think the decision to accept a high risk donor is a very personal one. I think alot of the decision should be based on how sick you are at the time the offer comes in. I personally did not have to make that decision and do not know what I would say personally.

That being said I can offer some input about that situation because a good friend at my center was presented with the question of whether or not she wanted a high risk donor? She was given a ton of information about her donor. Basically just because you take a high risk donor doesn't mean there are always issues. I know with my friend she was given the option of taking a high risk donor that had been a prostitute and an IV drug user. She had not been doing either for about 9 months and the tests they had run to that point had been clean. She opted to take the donor because she felt she wouldn't make it to get another call. She had been waiting for about 16 months.

Either way when it comes to transplant in general I think it is the hardest thing I have ever gone through and I haven't had really any issues. I have friends that are across the board on the struggles that they have had and for the most part they would all do it again if they were given the opportunity or if they needed it ... myself included.

Lindsey

coltsfan715 · Sep 11, 2009

I think the decision to accept a high risk donor is a very personal one. I think alot of the decision should be based on how sick you are at the time the offer comes in. I personally did not have to make that decision and do not know what I would say personally.

That being said I can offer some input about that situation because a good friend at my center was presented with the question of whether or not she wanted a high risk donor? She was given a ton of information about her donor. Basically just because you take a high risk donor doesn't mean there are always issues. I know with my friend she was given the option of taking a high risk donor that had been a prostitute and an IV drug user. She had not been doing either for about 9 months and the tests they had run to that point had been clean. She opted to take the donor because she felt she wouldn't make it to get another call. She had been waiting for about 16 months.

Either way when it comes to transplant in general I think it is the hardest thing I have ever gone through and I haven't had really any issues. I have friends that are across the board on the struggles that they have had and for the most part they would all do it again if they were given the opportunity or if they needed it ... myself included.

Lindsey

coltsfan715 · Sep 11, 2009

I think the decision to accept a high risk donor is a very personal one. I think alot of the decision should be based on how sick you are at the time the offer comes in. I personally did not have to make that decision and do not know what I would say personally.

That being said I can offer some input about that situation because a good friend at my center was presented with the question of whether or not she wanted a high risk donor? She was given a ton of information about her donor. Basically just because you take a high risk donor doesn't mean there are always issues. I know with my friend she was given the option of taking a high risk donor that had been a prostitute and an IV drug user. She had not been doing either for about 9 months and the tests they had run to that point had been clean. She opted to take the donor because she felt she wouldn't make it to get another call. She had been waiting for about 16 months.

Either way when it comes to transplant in general I think it is the hardest thing I have ever gone through and I haven't had really any issues. I have friends that are across the board on the struggles that they have had and for the most part they would all do it again if they were given the opportunity or if they needed it ... myself included.

Lindsey

coltsfan715 · Sep 11, 2009

I think the decision to accept a high risk donor is a very personal one. I think alot of the decision should be based on how sick you are at the time the offer comes in. I personally did not have to make that decision and do not know what I would say personally.

That being said I can offer some input about that situation because a good friend at my center was presented with the question of whether or not she wanted a high risk donor? She was given a ton of information about her donor. Basically just because you take a high risk donor doesn't mean there are always issues. I know with my friend she was given the option of taking a high risk donor that had been a prostitute and an IV drug user. She had not been doing either for about 9 months and the tests they had run to that point had been clean. She opted to take the donor because she felt she wouldn't make it to get another call. She had been waiting for about 16 months.

Either way when it comes to transplant in general I think it is the hardest thing I have ever gone through and I haven't had really any issues. I have friends that are across the board on the struggles that they have had and for the most part they would all do it again if they were given the opportunity or if they needed it ... myself included.

Lindsey

coltsfan715 · Sep 11, 2009

I think the decision to accept a high risk donor is a very personal one. I think alot of the decision should be based on how sick you are at the time the offer comes in. I personally did not have to make that decision and do not know what I would say personally.
 
 That being said I can offer some input about that situation because a good friend at my center was presented with the question of whether or not she wanted a high risk donor? She was given a ton of information about her donor. Basically just because you take a high risk donor doesn't mean there are always issues. I know with my friend she was given the option of taking a high risk donor that had been a prostitute and an IV drug user. She had not been doing either for about 9 months and the tests they had run to that point had been clean. She opted to take the donor because she felt she wouldn't make it to get another call. She had been waiting for about 16 months.
 
 Either way when it comes to transplant in general I think it is the hardest thing I have ever gone through and I haven't had really any issues. I have friends that are across the board on the struggles that they have had and for the most part they would all do it again if they were given the opportunity or if they needed it ... myself included.
 
 Lindsey

Transplantmommy · Sep 12, 2009

Hi Fallon,
Sorry that I did not reply earlier but I just got home from a vacation in Oklahoma the other day. I personally would not take any high risk donor lungs. As Annie (I think) said, there are so many chances of complications after the transplant that I would not want to add any further possibilities to it.

I think that you still have time to wait for a good set of lungs with the FEV1 that you have. My docs waited 5 months for the perfect set of lungs and I was down to 7% FEV1. Although I was on the verge of being in really bad shape, I am so glad that they waited because I have been living a great life for the past 2.5 years.

I hope that your wait for good lungs is short and that you are as well as you can be while you wait.

Transplantmommy · Sep 12, 2009

Hi Fallon,
Sorry that I did not reply earlier but I just got home from a vacation in Oklahoma the other day. I personally would not take any high risk donor lungs. As Annie (I think) said, there are so many chances of complications after the transplant that I would not want to add any further possibilities to it.

I think that you still have time to wait for a good set of lungs with the FEV1 that you have. My docs waited 5 months for the perfect set of lungs and I was down to 7% FEV1. Although I was on the verge of being in really bad shape, I am so glad that they waited because I have been living a great life for the past 2.5 years.

I hope that your wait for good lungs is short and that you are as well as you can be while you wait.

Transplantmommy · Sep 12, 2009

Hi Fallon,
Sorry that I did not reply earlier but I just got home from a vacation in Oklahoma the other day. I personally would not take any high risk donor lungs. As Annie (I think) said, there are so many chances of complications after the transplant that I would not want to add any further possibilities to it.

I think that you still have time to wait for a good set of lungs with the FEV1 that you have. My docs waited 5 months for the perfect set of lungs and I was down to 7% FEV1. Although I was on the verge of being in really bad shape, I am so glad that they waited because I have been living a great life for the past 2.5 years.

I hope that your wait for good lungs is short and that you are as well as you can be while you wait.

Transplantmommy · Sep 12, 2009

Hi Fallon,
Sorry that I did not reply earlier but I just got home from a vacation in Oklahoma the other day. I personally would not take any high risk donor lungs. As Annie (I think) said, there are so many chances of complications after the transplant that I would not want to add any further possibilities to it.

I think that you still have time to wait for a good set of lungs with the FEV1 that you have. My docs waited 5 months for the perfect set of lungs and I was down to 7% FEV1. Although I was on the verge of being in really bad shape, I am so glad that they waited because I have been living a great life for the past 2.5 years.

I hope that your wait for good lungs is short and that you are as well as you can be while you wait.

Transplantmommy · Sep 12, 2009

Hi Fallon,
 Sorry that I did not reply earlier but I just got home from a vacation in Oklahoma the other day. I personally would not take any high risk donor lungs. As Annie (I think) said, there are so many chances of complications after the transplant that I would not want to add any further possibilities to it.
 
 I think that you still have time to wait for a good set of lungs with the FEV1 that you have. My docs waited 5 months for the perfect set of lungs and I was down to 7% FEV1. Although I was on the verge of being in really bad shape, I am so glad that they waited because I have been living a great life for the past 2.5 years.
 
 I hope that your wait for good lungs is short and that you are as well as you can be while you wait.

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