Lung Transplant

R

RadChevy

New member
Hi,
I guess I must reply to this thread.

When I read the last person's comments, 'you are trading one set of problems for another set of problems', I knew I had to jump in.

That comment is straight out of the text book, or the mouth of doctors... who think they know what CF lungs are like and think they know what post tx life is like. They don't!!

Yes, there are problems post lung tx. Yes, not all success. Yes, there are some who would say it seemed easier with CF lungs... but the majority of folks who are post lung tx will tell you that it is worth it, they would do it again and the problems they traded in are far, far less than what their live concerns are now.

My thougt to that "typical" medical professional analogy is " I traded in a death sentence, what I got in return was life and breath!!" The two do not compare.

I can go on and on about the changes, but I am off to a 5K run and then some volunteer work today...

Joanne Schum
post lung tx 9/12/97
luckylungsforjo@aol.com


Joanne M. Schum

Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/

The Holidays are here. Want to start your shopping early? Why not shop
for great gifts and help those with cystic fibrosis! Check out our CF
Shop and shop until your hearts content...
http://www.lungsforlife.org/other_ways/lfl_store.htm

Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm
 
R

RadChevy

New member
Hi,
I guess I must reply to this thread.

When I read the last person's comments, 'you are trading one set of problems for another set of problems', I knew I had to jump in.

That comment is straight out of the text book, or the mouth of doctors... who think they know what CF lungs are like and think they know what post tx life is like. They don't!!

Yes, there are problems post lung tx. Yes, not all success. Yes, there are some who would say it seemed easier with CF lungs... but the majority of folks who are post lung tx will tell you that it is worth it, they would do it again and the problems they traded in are far, far less than what their live concerns are now.

My thougt to that "typical" medical professional analogy is " I traded in a death sentence, what I got in return was life and breath!!" The two do not compare.

I can go on and on about the changes, but I am off to a 5K run and then some volunteer work today...

Joanne Schum
post lung tx 9/12/97
luckylungsforjo@aol.com


Joanne M. Schum

Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/

The Holidays are here. Want to start your shopping early? Why not shop
for great gifts and help those with cystic fibrosis! Check out our CF
Shop and shop until your hearts content...
http://www.lungsforlife.org/other_ways/lfl_store.htm

Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm
 
I

IG

Guest
Despite how much fear I went through, how much anxiety I endured to make this decision... I agree with the last poster I would do it again. It's worth it.
 
I

IG

Guest
Despite how much fear I went through, how much anxiety I endured to make this decision... I agree with the last poster I would do it again. It's worth it.
 
C

ClashPunk82

New member
for the people who had transplants, what does it feel like to breathe? is it so much easier? i am about to be evaluated for one and that's my biggest question.

Nicole 22 CF
 
C

ClashPunk82

New member
for the people who had transplants, what does it feel like to breathe? is it so much easier? i am about to be evaluated for one and that's my biggest question.

Nicole 22 CF
 
A

anonymous

New member
Hello - I think this is a stupid question but here goes. I have a 3 month old with cf. Does a lung transplant allow for the new lungs to always be healthy (free of cf?). I thought over time the new lungs would become effected as a result of the cf. I hope I am wrong! Good luck to all you brave people.
 
A

anonymous

New member
Hello - I think this is a stupid question but here goes. I have a 3 month old with cf. Does a lung transplant allow for the new lungs to always be healthy (free of cf?). I thought over time the new lungs would become effected as a result of the cf. I hope I am wrong! Good luck to all you brave people.
 
I

IG

Guest
Nicole... it's unbelieveable, from my experiences. You can never fully know what it's like to breathe like this until after you've had it. (Sorry <img src="i/expressions/face-icon-small-frown.gif" border="0"> probably not what you want to hear...) As for the last Anonymous poster... it's not a stupid question. After you've had the transplant you can never have CF in your lungs again. Of course, you still have CF, the lungs just aren't affected anymore.
 
I

IG

Guest
Nicole... it's unbelieveable, from my experiences. You can never fully know what it's like to breathe like this until after you've had it. (Sorry <img src="i/expressions/face-icon-small-frown.gif" border="0"> probably not what you want to hear...) As for the last Anonymous poster... it's not a stupid question. After you've had the transplant you can never have CF in your lungs again. Of course, you still have CF, the lungs just aren't affected anymore.
 
S

supermanfan

New member
I was quite surprised to read some of the comments written here. I know I have been exceptionally sucessfull with my transplant. I live a complete normal life. I've never been sick since my transplant. That's 7 years of healthy living. I have only had sinus colds (very mild) from time to time, compared to having major sinus colds all the time.

Nicole, there is nothing like breathing like a healthy person. I never really had that ability. Even though I was healthy as a child, played soccer, and did many things, I still got short of breath compared to other kids. I can't even describe to you because it's very hard, but remember I would never have been able to go to the mountains again. I would never have been able to go swimming again. I could never have ridden a bike again, and I would never would have been able to work with and ride my horse. I would never have been able to laugh the way I do now. I love laughing, and I think that was one of the things I noticed right off the bat. When something was funny before I just kinda held my laugh because I know it would have got me coughing, and weezing... not now. I just let myself laugh. It's like I'm free to do what ever. I don't have to do breathing treatments, which means when I travel I don't have to keep my eye on the time. I take pills in the morning when I eat, and before I go to bed. It's that simple.

I started this thread to let people know it's nothing to be afraid about. It is wonderful. CF is not curable at this time, so the only other choice is to die once you get too sick, and I don't know about the dying peaceful comment, because there's nothing peaceful about not being able to breath. Do you know what your body starts doing when you aren't getting enough oxygen? It's not pretty. For those who don't want it because they feel they don't want anyone elses organs in their body, well, that's a personal choice, but I have to say I had a friend that never wanted one. Then she started getting real sick, and decided to go on the list. The only problem was that by the time she did, she was really too sick, and she passes away before there was anything available for her. She never realized how hard it was. She had always been very healthy, moreso than I, but she simply never realized what it was like to be oxygen deprived.

I would do it again 100 times. I love life too much. I love my husband, and would hate to leave him. I can actually say that he loves me so much that it would be very painful for him, and that alone keeps me from dying.

Transplant is a great thing. I wouldn't want anyone to be afraid of it. Death is what you should be afraid of. Especially if you are young. There's too much out there for you.

Denise
 
S

supermanfan

New member
I was quite surprised to read some of the comments written here. I know I have been exceptionally sucessfull with my transplant. I live a complete normal life. I've never been sick since my transplant. That's 7 years of healthy living. I have only had sinus colds (very mild) from time to time, compared to having major sinus colds all the time.

Nicole, there is nothing like breathing like a healthy person. I never really had that ability. Even though I was healthy as a child, played soccer, and did many things, I still got short of breath compared to other kids. I can't even describe to you because it's very hard, but remember I would never have been able to go to the mountains again. I would never have been able to go swimming again. I could never have ridden a bike again, and I would never would have been able to work with and ride my horse. I would never have been able to laugh the way I do now. I love laughing, and I think that was one of the things I noticed right off the bat. When something was funny before I just kinda held my laugh because I know it would have got me coughing, and weezing... not now. I just let myself laugh. It's like I'm free to do what ever. I don't have to do breathing treatments, which means when I travel I don't have to keep my eye on the time. I take pills in the morning when I eat, and before I go to bed. It's that simple.

I started this thread to let people know it's nothing to be afraid about. It is wonderful. CF is not curable at this time, so the only other choice is to die once you get too sick, and I don't know about the dying peaceful comment, because there's nothing peaceful about not being able to breath. Do you know what your body starts doing when you aren't getting enough oxygen? It's not pretty. For those who don't want it because they feel they don't want anyone elses organs in their body, well, that's a personal choice, but I have to say I had a friend that never wanted one. Then she started getting real sick, and decided to go on the list. The only problem was that by the time she did, she was really too sick, and she passes away before there was anything available for her. She never realized how hard it was. She had always been very healthy, moreso than I, but she simply never realized what it was like to be oxygen deprived.

I would do it again 100 times. I love life too much. I love my husband, and would hate to leave him. I can actually say that he loves me so much that it would be very painful for him, and that alone keeps me from dying.

Transplant is a great thing. I wouldn't want anyone to be afraid of it. Death is what you should be afraid of. Especially if you are young. There's too much out there for you.

Denise
 
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