Lung Transplant

supermanfan · Oct 27, 2004

How is a recipient of new lungs through the wonderful medical advances of Lung-Transplantation? I am. 7 years now. Healthy as a horse... litterally, and I have two horses now also. <img src="i/expressions/face-icon-small-happy.gif" border="0">

supermanfan · Oct 27, 2004

How is a recipient of new lungs through the wonderful medical advances of Lung-Transplantation? I am. 7 years now. Healthy as a horse... litterally, and I have two horses now also. <img src="i/expressions/face-icon-small-happy.gif" border="0">

ClashPunk82 · Oct 27, 2004

Hi supermanfan its Nicole from the WB boards. just wanted to say hi!! So what's it like to have real lungs? iis it so much easier to breathe? im scared about having a transplant but I know that in the end it will be a lot better than having the lungs I do now!!

Nicole 22 CF

ClashPunk82 · Oct 27, 2004

Hi supermanfan its Nicole from the WB boards. just wanted to say hi!! So what's it like to have real lungs? iis it so much easier to breathe? im scared about having a transplant but I know that in the end it will be a lot better than having the lungs I do now!!

Nicole 22 CF

supermanfan · Oct 27, 2004

Ok, well I just had this great speach typed up, but my cat walked across the key-board and erased all of it.

The just of it was... there's no need to be afraid of transplant now days. It's getting more common every day. What there is to be afraid of is dying. You are far too young, and transplant will save your life. There is no cure for CF unless I've been out of the loop for so long now that I don't even know of it. But even if there was a cure, it wouldn't help the people who already have lung damage.

It's important to get on the transplant list early because it is so long now days. I had a friend that said she wouldn't get a transplant because she said she knew of people who died on the operating table. I said BULL. Anyways, she got past the point of being just sick, and decided to go on the list, but it was loo long, and she didn't have much time to wait. She ended up dying before there was a donor that matched her. I new her since I was 7 years old when I was diagnoses. We worked together, and she and my sister had some classes together. We also went to CF camp together, and counselled together. She was always very healthy, but things happen as you get older.

supermanfan · Oct 27, 2004

Ok, well I just had this great speach typed up, but my cat walked across the key-board and erased all of it.

The just of it was... there's no need to be afraid of transplant now days. It's getting more common every day. What there is to be afraid of is dying. You are far too young, and transplant will save your life. There is no cure for CF unless I've been out of the loop for so long now that I don't even know of it. But even if there was a cure, it wouldn't help the people who already have lung damage.

It's important to get on the transplant list early because it is so long now days. I had a friend that said she wouldn't get a transplant because she said she knew of people who died on the operating table. I said BULL. Anyways, she got past the point of being just sick, and decided to go on the list, but it was loo long, and she didn't have much time to wait. She ended up dying before there was a donor that matched her. I new her since I was 7 years old when I was diagnoses. We worked together, and she and my sister had some classes together. We also went to CF camp together, and counselled together. She was always very healthy, but things happen as you get older.

summer732 · Oct 28, 2004

I'm so sorry to hear about your friend.
But it is wonderful to hear about you. As a person waiting on the transplant list it is so wonderful to hear about people who are out there and doing great!!!
Thank you for the encouragement and inspiration!!
Margaret

summer732 · Oct 28, 2004

I'm so sorry to hear about your friend.
But it is wonderful to hear about you. As a person waiting on the transplant list it is so wonderful to hear about people who are out there and doing great!!!
Thank you for the encouragement and inspiration!!
Margaret

jenhum · Oct 28, 2004

supermanfan-
thanks for writing about your positive experience. right now i'm doing pretty good and lung transplants aren't even something that i have to worry about, but the older i get, the more i realize that it could change at any time. it's encouraging to hear positive stories because as i'm sure you remember, lung transplants sound terrifying to those of us that haven't had one!!!! i'm glad you are doing so well!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

jenhum · Oct 28, 2004

supermanfan-
thanks for writing about your positive experience. right now i'm doing pretty good and lung transplants aren't even something that i have to worry about, but the older i get, the more i realize that it could change at any time. it's encouraging to hear positive stories because as i'm sure you remember, lung transplants sound terrifying to those of us that haven't had one!!!! i'm glad you are doing so well!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

supermanfan · Oct 28, 2004

Well, and just so that you know I was an extremely healthy child for having CF. Even after high school, I went to college, and worked full time. But as I got older, I really had to slow down. On my first wedding anniversary we went to the mountains, and the first night I was struggling soo bad, my husband just said that's it we're getting out of here. We went back down to sea level, and I called my doctor. After that I went on the transplant list. It wasn't the altitude that caused it, but being that I live at sea level, I had no idea the higher altitude would effect me like it did. Anyways, I just wish there were more donors out there. We could really use them. If anyone ever needs something answered please feel free to ask me.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
Denise

supermanfan · Oct 28, 2004

Well, and just so that you know I was an extremely healthy child for having CF. Even after high school, I went to college, and worked full time. But as I got older, I really had to slow down. On my first wedding anniversary we went to the mountains, and the first night I was struggling soo bad, my husband just said that's it we're getting out of here. We went back down to sea level, and I called my doctor. After that I went on the transplant list. It wasn't the altitude that caused it, but being that I live at sea level, I had no idea the higher altitude would effect me like it did. Anyways, I just wish there were more donors out there. We could really use them. If anyone ever needs something answered please feel free to ask me.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
Denise

dresapp · Oct 30, 2004

I am also listed for transplant but I also need a liver and pancreas. Im listed for all three. My lungs arent as bad as they should be for xplant but because my liver is sooo bad, they want to do it all. My liver disease is CF related. They figure my chances are better with new lungs as well.
I have an older sis who has CF as well and will be post xplant , 4 years in January. Shes been doing well so far. It has been encouraging to see her do well so im not as scared. But it is still a big deal. I just keep on thinking about how much better i will feel(hopefully)!

Kris 22/f/CF diabetes and liver disease
waiting pre xplant 3 months

dresapp · Oct 30, 2004

I am also listed for transplant but I also need a liver and pancreas. Im listed for all three. My lungs arent as bad as they should be for xplant but because my liver is sooo bad, they want to do it all. My liver disease is CF related. They figure my chances are better with new lungs as well.
I have an older sis who has CF as well and will be post xplant , 4 years in January. Shes been doing well so far. It has been encouraging to see her do well so im not as scared. But it is still a big deal. I just keep on thinking about how much better i will feel(hopefully)!

Kris 22/f/CF diabetes and liver disease
waiting pre xplant 3 months

ClashPunk82 · Oct 30, 2004

<blockquote>Quote <hr>Originally posted by: dresapp I am also listed for transplant but I also need a liver and pancreas. Im listed for all three. My lungs arent as bad as they should be for xplant but because my liver is sooo bad, they want to do it all. My liver disease is CF related. They figure my chances are better with new lungs as well.

I have an older sis who has CF as well and will be post xplant , 4 years in January. Shes been doing well so far. It has been encouraging to see her do well so im not as scared. But it is still a big deal. I just keep on thinking about how much better i will feel(hopefully)!

Kris 22/f/CF diabetes and liver disease

waiting pre xplant 3 months<hr></blockquote>

i didn't know they did pancreatic transplants. i thought they was still in the process. sounds great thought I want a new pancrease and get rid of my CFRD!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

ClashPunk82 · Oct 30, 2004

<blockquote>Quote <hr>Originally posted by: dresapp I am also listed for transplant but I also need a liver and pancreas. Im listed for all three. My lungs arent as bad as they should be for xplant but because my liver is sooo bad, they want to do it all. My liver disease is CF related. They figure my chances are better with new lungs as well.

I have an older sis who has CF as well and will be post xplant , 4 years in January. Shes been doing well so far. It has been encouraging to see her do well so im not as scared. But it is still a big deal. I just keep on thinking about how much better i will feel(hopefully)!

Kris 22/f/CF diabetes and liver disease

waiting pre xplant 3 months<hr></blockquote>

i didn't know they did pancreatic transplants. i thought they was still in the process. sounds great thought I want a new pancrease and get rid of my CFRD!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous · Oct 30, 2004

I have a question, problem, concern, need help... My husband is a 24yo, fairly healthy at this time with CF. But the man is extremely and totally opposed to a lung transplant, or any transplant. We have known eachother and been together for 5 years, and have been married for just over 2. He told me his feelings on a transplant for himself years ago, that he was opposed to it, didn't want anything artificial in his body and that if it was his time, then he didn't want interventions. Now, I always kind of figured maybe that would change when we got married, maybe it would changed when we started talking about kids (and we are on a waiting list for an invetro-ICSI procedure in 9 months). But it hasn't. I told him that I know it's not fair of me to hope he changes his mind, but I also think he is being selfish and thinkig only of himself. I told him that the decision he made years ago, before he ever thought he would live past 18, before he ever thought he would get married, before he even thought there was a possibility of having his own kids; is outdated and I have pleaded with him to reconsider the decision. Not to necessarily change his mind in this instant, but that it is ok for him to think of his wife, and if we have kids, to think of his kids when he makes such a decision. Not to base everything just on what is good just for him anymore-that he has other people in his life that he should consider. And if in the end of all that thinking and reconsidering, he comes to the same conclusion- that is ok, but I feel like his lack of even wanting to reconsider is a reflection of how he values our relationship.
We have a good relationship, some of the typical disagreements, money, time, work...but we love eachother and have always been there for eachother and I know I would do anything for him, and he says he would do anything for me, but I feel like saying "ovbioulsy not". We spend our free days together and enjoy being in eachothers company. so I just don't understand why he won't even take the time to reconsider a decision he made a long time ago-that is in my opinion "outdated".

Is there anyone else out there who has had a similar situation like this, that can help me. I don't know if there is a different way I can approach this with him, how to make him understand that he makes me feel like crap when he says he decided long ago and it's not going to change. I am so frustrated and don't know what to do. I am taking it so seriously it's killing me.

Thanks

Julie

anonymous · Oct 30, 2004

I have a question, problem, concern, need help... My husband is a 24yo, fairly healthy at this time with CF. But the man is extremely and totally opposed to a lung transplant, or any transplant. We have known eachother and been together for 5 years, and have been married for just over 2. He told me his feelings on a transplant for himself years ago, that he was opposed to it, didn't want anything artificial in his body and that if it was his time, then he didn't want interventions. Now, I always kind of figured maybe that would change when we got married, maybe it would changed when we started talking about kids (and we are on a waiting list for an invetro-ICSI procedure in 9 months). But it hasn't. I told him that I know it's not fair of me to hope he changes his mind, but I also think he is being selfish and thinkig only of himself. I told him that the decision he made years ago, before he ever thought he would live past 18, before he ever thought he would get married, before he even thought there was a possibility of having his own kids; is outdated and I have pleaded with him to reconsider the decision. Not to necessarily change his mind in this instant, but that it is ok for him to think of his wife, and if we have kids, to think of his kids when he makes such a decision. Not to base everything just on what is good just for him anymore-that he has other people in his life that he should consider. And if in the end of all that thinking and reconsidering, he comes to the same conclusion- that is ok, but I feel like his lack of even wanting to reconsider is a reflection of how he values our relationship.
We have a good relationship, some of the typical disagreements, money, time, work...but we love eachother and have always been there for eachother and I know I would do anything for him, and he says he would do anything for me, but I feel like saying "ovbioulsy not". We spend our free days together and enjoy being in eachothers company. so I just don't understand why he won't even take the time to reconsider a decision he made a long time ago-that is in my opinion "outdated".

Is there anyone else out there who has had a similar situation like this, that can help me. I don't know if there is a different way I can approach this with him, how to make him understand that he makes me feel like crap when he says he decided long ago and it's not going to change. I am so frustrated and don't know what to do. I am taking it so seriously it's killing me.

Thanks

Julie

anonymous · Oct 30, 2004

One thing w/ transplant (tx) to remember is that you're just exchanging one set of problems for another. The new lungs shouldn't be cystic, which is good, but you then have to worry about infection, rejection, wear & tear on kidneys, etc, post tx.
I once read an article in a CF magazine written by a lung tx recepient & she said when it comes to considering tx, you can either pick to die basically peacefully, or get a transplant. How I took that is, you have to really want it, because it's not the easy road to choose. Maybe I misinterpreted it.
I understand your feelings too, but he is the one that will have to deal w/ the surgery, possibly complications, etc.

anonymous · Oct 30, 2004

One thing w/ transplant (tx) to remember is that you're just exchanging one set of problems for another. The new lungs shouldn't be cystic, which is good, but you then have to worry about infection, rejection, wear & tear on kidneys, etc, post tx.
I once read an article in a CF magazine written by a lung tx recepient & she said when it comes to considering tx, you can either pick to die basically peacefully, or get a transplant. How I took that is, you have to really want it, because it's not the easy road to choose. Maybe I misinterpreted it.
I understand your feelings too, but he is the one that will have to deal w/ the surgery, possibly complications, etc.

Lung Transplant

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