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Wanting a Transplant
- Thread starter Cojean62
- Start date
Hi,
In my opinion it is totally worth it. I recieved my transplant in Oct of 2009, and life has been great since. Before my transplant my life was prety much limited to the couch. I had to quit my job which I loved, I was to tired to go anywhere, I had to move back home so my mom could help me out. Post op, I am back in school full time, I go out with my friends and dont have to worry about keeping up with them, I can walk and talk at the same time!
As for the time on the wait list, I was on the list for 6 weeks. Lungs are listed completely different from different organs. All organ transplants take into consideration the health status of the patient but unlike say a kidney your number isnt called if you have been waiting the longests. Lungs are based on multiple things like your PFTs, O2 sats, 6 minute walk, results of your right heart catheterization, etc.
You may ask, "what about the surgery, is it worth the pain? " Totally is. I actually had very little post operative pain. The hospital where I had mine done had an anesthesiologist who came in every day to check my pain and make adjustements as necessary.
There are probably a million questions running around in your head, so feel free to message me if you want to chat further.
Good luck!
In my opinion it is totally worth it. I recieved my transplant in Oct of 2009, and life has been great since. Before my transplant my life was prety much limited to the couch. I had to quit my job which I loved, I was to tired to go anywhere, I had to move back home so my mom could help me out. Post op, I am back in school full time, I go out with my friends and dont have to worry about keeping up with them, I can walk and talk at the same time!
As for the time on the wait list, I was on the list for 6 weeks. Lungs are listed completely different from different organs. All organ transplants take into consideration the health status of the patient but unlike say a kidney your number isnt called if you have been waiting the longests. Lungs are based on multiple things like your PFTs, O2 sats, 6 minute walk, results of your right heart catheterization, etc.
You may ask, "what about the surgery, is it worth the pain? " Totally is. I actually had very little post operative pain. The hospital where I had mine done had an anesthesiologist who came in every day to check my pain and make adjustements as necessary.
There are probably a million questions running around in your head, so feel free to message me if you want to chat further.
Good luck!
Hi,
In my opinion it is totally worth it. I recieved my transplant in Oct of 2009, and life has been great since. Before my transplant my life was prety much limited to the couch. I had to quit my job which I loved, I was to tired to go anywhere, I had to move back home so my mom could help me out. Post op, I am back in school full time, I go out with my friends and dont have to worry about keeping up with them, I can walk and talk at the same time!
As for the time on the wait list, I was on the list for 6 weeks. Lungs are listed completely different from different organs. All organ transplants take into consideration the health status of the patient but unlike say a kidney your number isnt called if you have been waiting the longests. Lungs are based on multiple things like your PFTs, O2 sats, 6 minute walk, results of your right heart catheterization, etc.
You may ask, "what about the surgery, is it worth the pain? " Totally is. I actually had very little post operative pain. The hospital where I had mine done had an anesthesiologist who came in every day to check my pain and make adjustements as necessary.
There are probably a million questions running around in your head, so feel free to message me if you want to chat further.
Good luck!
In my opinion it is totally worth it. I recieved my transplant in Oct of 2009, and life has been great since. Before my transplant my life was prety much limited to the couch. I had to quit my job which I loved, I was to tired to go anywhere, I had to move back home so my mom could help me out. Post op, I am back in school full time, I go out with my friends and dont have to worry about keeping up with them, I can walk and talk at the same time!
As for the time on the wait list, I was on the list for 6 weeks. Lungs are listed completely different from different organs. All organ transplants take into consideration the health status of the patient but unlike say a kidney your number isnt called if you have been waiting the longests. Lungs are based on multiple things like your PFTs, O2 sats, 6 minute walk, results of your right heart catheterization, etc.
You may ask, "what about the surgery, is it worth the pain? " Totally is. I actually had very little post operative pain. The hospital where I had mine done had an anesthesiologist who came in every day to check my pain and make adjustements as necessary.
There are probably a million questions running around in your head, so feel free to message me if you want to chat further.
Good luck!
<p>Hi,
<p>In my opinion it is totally worth it. I recieved my transplant in Oct of 2009, and life has been great since. Before my transplant my life was prety much limited to the couch. I had to quit my job which I loved, I was to tired to go anywhere, I had to move back home so my mom could help me out. Post op, I am back in school full time, I go out with my friends and dont have to worry about keeping up with them, I can walk and talk at the same time!
<p>As for the time on the wait list, I was on the list for 6 weeks. Lungs are listed completely different from different organs. All organ transplants take into consideration the health status of the patient but unlike say a kidney your number isnt called if you have been waiting the longests. Lungs are based on multiple things like your PFTs, O2 sats, 6 minute walk, results of your right heart catheterization, etc.
<p>You may ask, "what about the surgery, is it worth the pain? " Totally is. I actually had very little post operative pain. The hospital where I had mine done had an anesthesiologist who came in every day to check my pain and make adjustements as necessary.
<p>There are probably a million questions running around in your head, so feel free to message me if you want to chat further.
<p>Good luck!
<p>
<p>In my opinion it is totally worth it. I recieved my transplant in Oct of 2009, and life has been great since. Before my transplant my life was prety much limited to the couch. I had to quit my job which I loved, I was to tired to go anywhere, I had to move back home so my mom could help me out. Post op, I am back in school full time, I go out with my friends and dont have to worry about keeping up with them, I can walk and talk at the same time!
<p>As for the time on the wait list, I was on the list for 6 weeks. Lungs are listed completely different from different organs. All organ transplants take into consideration the health status of the patient but unlike say a kidney your number isnt called if you have been waiting the longests. Lungs are based on multiple things like your PFTs, O2 sats, 6 minute walk, results of your right heart catheterization, etc.
<p>You may ask, "what about the surgery, is it worth the pain? " Totally is. I actually had very little post operative pain. The hospital where I had mine done had an anesthesiologist who came in every day to check my pain and make adjustements as necessary.
<p>There are probably a million questions running around in your head, so feel free to message me if you want to chat further.
<p>Good luck!
<p>
cnsky54RRT
New member
I can't believe nobody has answered yet!
As a medical person who has seen the aftereffects of transplants, I can say yes, and yes. My friend Heather who just had hers three weeks ago did not wait very long at all once listed, a mere two months. The change in her already is phenomenal.
Lex on this very board ran the New York Marathon a year post transplant.
I now have to start planning to keep my promises to Heather to take her skydiving and to Hawaii to swim with dolphins. Last time we went out for Mexican food she could not walk from the door of the restaurant to the car, even though it was only 30 steps and she had the oxygen tank.
Nobody can say how many years this adds to life. My observation is that it definitely adds life to your years. Talk to your CF doc and contact local people who have been through it and can answer all your questions in more detail!
As a medical person who has seen the aftereffects of transplants, I can say yes, and yes. My friend Heather who just had hers three weeks ago did not wait very long at all once listed, a mere two months. The change in her already is phenomenal.
Lex on this very board ran the New York Marathon a year post transplant.
I now have to start planning to keep my promises to Heather to take her skydiving and to Hawaii to swim with dolphins. Last time we went out for Mexican food she could not walk from the door of the restaurant to the car, even though it was only 30 steps and she had the oxygen tank.
Nobody can say how many years this adds to life. My observation is that it definitely adds life to your years. Talk to your CF doc and contact local people who have been through it and can answer all your questions in more detail!
cnsky54RRT
New member
I can't believe nobody has answered yet!
As a medical person who has seen the aftereffects of transplants, I can say yes, and yes. My friend Heather who just had hers three weeks ago did not wait very long at all once listed, a mere two months. The change in her already is phenomenal.
Lex on this very board ran the New York Marathon a year post transplant.
I now have to start planning to keep my promises to Heather to take her skydiving and to Hawaii to swim with dolphins. Last time we went out for Mexican food she could not walk from the door of the restaurant to the car, even though it was only 30 steps and she had the oxygen tank.
Nobody can say how many years this adds to life. My observation is that it definitely adds life to your years. Talk to your CF doc and contact local people who have been through it and can answer all your questions in more detail!
As a medical person who has seen the aftereffects of transplants, I can say yes, and yes. My friend Heather who just had hers three weeks ago did not wait very long at all once listed, a mere two months. The change in her already is phenomenal.
Lex on this very board ran the New York Marathon a year post transplant.
I now have to start planning to keep my promises to Heather to take her skydiving and to Hawaii to swim with dolphins. Last time we went out for Mexican food she could not walk from the door of the restaurant to the car, even though it was only 30 steps and she had the oxygen tank.
Nobody can say how many years this adds to life. My observation is that it definitely adds life to your years. Talk to your CF doc and contact local people who have been through it and can answer all your questions in more detail!
cnsky54RRT
New member
I can't believe nobody has answered yet!
<br />
<br />As a medical person who has seen the aftereffects of transplants, I can say yes, and yes. My friend Heather who just had hers three weeks ago did not wait very long at all once listed, a mere two months. The change in her already is phenomenal.
<br />
<br />Lex on this very board ran the New York Marathon a year post transplant.
<br />
<br />I now have to start planning to keep my promises to Heather to take her skydiving and to Hawaii to swim with dolphins. Last time we went out for Mexican food she could not walk from the door of the restaurant to the car, even though it was only 30 steps and she had the oxygen tank.
<br />
<br />Nobody can say how many years this adds to life. My observation is that it definitely adds life to your years. Talk to your CF doc and contact local people who have been through it and can answer all your questions in more detail!
<br />
<br />As a medical person who has seen the aftereffects of transplants, I can say yes, and yes. My friend Heather who just had hers three weeks ago did not wait very long at all once listed, a mere two months. The change in her already is phenomenal.
<br />
<br />Lex on this very board ran the New York Marathon a year post transplant.
<br />
<br />I now have to start planning to keep my promises to Heather to take her skydiving and to Hawaii to swim with dolphins. Last time we went out for Mexican food she could not walk from the door of the restaurant to the car, even though it was only 30 steps and she had the oxygen tank.
<br />
<br />Nobody can say how many years this adds to life. My observation is that it definitely adds life to your years. Talk to your CF doc and contact local people who have been through it and can answer all your questions in more detail!
minimedic304
New member
Why would your mother say that.... there is no longer a list, it is based on demand. When your lung function reaches a certain level, usually your fev1 is below 30% they begin the screening process to get a transplant. It is not a easy experience. You must live within 1 hour of the transplant facility for the first year of the transplant and then after that 2 hours away is the max.
The pain immediatly after is intense, and also the success rate varies based on facilities. You want to find a center that does at least 25 lung transplants a year, johns hopkins in Maryland is one the best with a 95% success rate the first year. Many patients dont live more than 5 years after a transplant but I personally know several that have lived now over 13 yrs.
All I can say is its your life, you only get 1 chance at so I would do all your treatments and try to keep the lungs you were born with, and a transplant is a life or death last resort.
The pain immediatly after is intense, and also the success rate varies based on facilities. You want to find a center that does at least 25 lung transplants a year, johns hopkins in Maryland is one the best with a 95% success rate the first year. Many patients dont live more than 5 years after a transplant but I personally know several that have lived now over 13 yrs.
All I can say is its your life, you only get 1 chance at so I would do all your treatments and try to keep the lungs you were born with, and a transplant is a life or death last resort.
minimedic304
New member
Why would your mother say that.... there is no longer a list, it is based on demand. When your lung function reaches a certain level, usually your fev1 is below 30% they begin the screening process to get a transplant. It is not a easy experience. You must live within 1 hour of the transplant facility for the first year of the transplant and then after that 2 hours away is the max.
The pain immediatly after is intense, and also the success rate varies based on facilities. You want to find a center that does at least 25 lung transplants a year, johns hopkins in Maryland is one the best with a 95% success rate the first year. Many patients dont live more than 5 years after a transplant but I personally know several that have lived now over 13 yrs.
All I can say is its your life, you only get 1 chance at so I would do all your treatments and try to keep the lungs you were born with, and a transplant is a life or death last resort.
The pain immediatly after is intense, and also the success rate varies based on facilities. You want to find a center that does at least 25 lung transplants a year, johns hopkins in Maryland is one the best with a 95% success rate the first year. Many patients dont live more than 5 years after a transplant but I personally know several that have lived now over 13 yrs.
All I can say is its your life, you only get 1 chance at so I would do all your treatments and try to keep the lungs you were born with, and a transplant is a life or death last resort.
minimedic304
New member
<p>Why would your mother say that.... there is no longer a list, it is based on demand. When your lung function reaches a certain level, usually your fev1 is below 30% they begin the screening process to get a transplant. It is not a easy experience. You must live within 1 hour of the transplant facility for the first year of the transplant and then after that 2 hours away is the max.
<p>The pain immediatly after is intense, and also the success rate varies based on facilities. You want to find a center that does at least 25 lung transplants a year, johns hopkins in Maryland is one the best with a 95% success rate the first year. Many patients dont live more than 5 years after a transplant but I personally know several that have lived now over 13 yrs.
<p>All I can say is its your life, you only get 1 chance at so I would do all your treatments and try to keep the lungs you were born with, and a transplant is a life or death last resort.
<p>The pain immediatly after is intense, and also the success rate varies based on facilities. You want to find a center that does at least 25 lung transplants a year, johns hopkins in Maryland is one the best with a 95% success rate the first year. Many patients dont live more than 5 years after a transplant but I personally know several that have lived now over 13 yrs.
<p>All I can say is its your life, you only get 1 chance at so I would do all your treatments and try to keep the lungs you were born with, and a transplant is a life or death last resort.
I can tell you I have been waiting 5 months now and for me the wait hasn't been bad at all. I know lots of people who have had transplants and not one of them has regretted the decision at all. As for life expectancy it's different for everyone, I have one friend who is going on 20 yrs with her new lungs and she leads a perfectly normal life! You should talk to your social worker at your clinic and see if she can put you in contact with local people who have done it and talk to your docs about it. Every transplant center has different rules/guidelines so if your pfts are hanging around or below 30% it's worth it to at least get the information and then decide if you want to do the evaluation. Feel free to message me with any questions!
I can tell you I have been waiting 5 months now and for me the wait hasn't been bad at all. I know lots of people who have had transplants and not one of them has regretted the decision at all. As for life expectancy it's different for everyone, I have one friend who is going on 20 yrs with her new lungs and she leads a perfectly normal life! You should talk to your social worker at your clinic and see if she can put you in contact with local people who have done it and talk to your docs about it. Every transplant center has different rules/guidelines so if your pfts are hanging around or below 30% it's worth it to at least get the information and then decide if you want to do the evaluation. Feel free to message me with any questions!
I can tell you I have been waiting 5 months now and for me the wait hasn't been bad at all. I know lots of people who have had transplants and not one of them has regretted the decision at all. As for life expectancy it's different for everyone, I have one friend who is going on 20 yrs with her new lungs and she leads a perfectly normal life! You should talk to your social worker at your clinic and see if she can put you in contact with local people who have done it and talk to your docs about it. Every transplant center has different rules/guidelines so if your pfts are hanging around or below 30% it's worth it to at least get the information and then decide if you want to do the evaluation. Feel free to message me with any questions!
Hi Cojean,
You might want to check out the Transplant Support Forums at http://www.transplantbuddies.org/
There are tons of different perspectives of people that have had lung transplants...even people that have had TWO lung transplants, because life is so much worth living regardless of how difficult the actual procedure is.
Before you take your Mom's advice, I would contact a transplant center and at least become educated on transplant. I am not sure where you live, but Loyola in Chicago (and I'm sure other centers) offer education classes to teach you and your family all about transplant - the risks AND benefits - so you can make an educated decision. I think Mag has a great idea about asking your social worker to put you in touch with real transplant patients.
It's true that the survival rate is 50% 5 years post-transplant, however, if I can have 5 years of being able to ski, bike, hike, travel, play with my dogs and look forward to doing things with my husband and being able to breathe - I'm gonna TAKE IT! You never know, you could be part of the 50% that lives beyond 5 years out to 20+ (Yes, I know some people 20 years out!!).
Let me tell you this - I had a lobectomy in 2009 and during the recovery period of the surgery, I was in a fair amount of pain and very uncomfortable...however, when I think back to what I went through, I honestly cannot really remember the pain. I just feel proud of myself! You can do anything you set your mind to if you are informed, your own advocate and thinking of the future goal - and suddenly the fear will start to fall away and you will see hope!
You might want to check out the Transplant Support Forums at http://www.transplantbuddies.org/
There are tons of different perspectives of people that have had lung transplants...even people that have had TWO lung transplants, because life is so much worth living regardless of how difficult the actual procedure is.
Before you take your Mom's advice, I would contact a transplant center and at least become educated on transplant. I am not sure where you live, but Loyola in Chicago (and I'm sure other centers) offer education classes to teach you and your family all about transplant - the risks AND benefits - so you can make an educated decision. I think Mag has a great idea about asking your social worker to put you in touch with real transplant patients.
It's true that the survival rate is 50% 5 years post-transplant, however, if I can have 5 years of being able to ski, bike, hike, travel, play with my dogs and look forward to doing things with my husband and being able to breathe - I'm gonna TAKE IT! You never know, you could be part of the 50% that lives beyond 5 years out to 20+ (Yes, I know some people 20 years out!!).
Let me tell you this - I had a lobectomy in 2009 and during the recovery period of the surgery, I was in a fair amount of pain and very uncomfortable...however, when I think back to what I went through, I honestly cannot really remember the pain. I just feel proud of myself! You can do anything you set your mind to if you are informed, your own advocate and thinking of the future goal - and suddenly the fear will start to fall away and you will see hope!
Hi Cojean,
You might want to check out the Transplant Support Forums at http://www.transplantbuddies.org/
There are tons of different perspectives of people that have had lung transplants...even people that have had TWO lung transplants, because life is so much worth living regardless of how difficult the actual procedure is.
Before you take your Mom's advice, I would contact a transplant center and at least become educated on transplant. I am not sure where you live, but Loyola in Chicago (and I'm sure other centers) offer education classes to teach you and your family all about transplant - the risks AND benefits - so you can make an educated decision. I think Mag has a great idea about asking your social worker to put you in touch with real transplant patients.
It's true that the survival rate is 50% 5 years post-transplant, however, if I can have 5 years of being able to ski, bike, hike, travel, play with my dogs and look forward to doing things with my husband and being able to breathe - I'm gonna TAKE IT! You never know, you could be part of the 50% that lives beyond 5 years out to 20+ (Yes, I know some people 20 years out!!).
Let me tell you this - I had a lobectomy in 2009 and during the recovery period of the surgery, I was in a fair amount of pain and very uncomfortable...however, when I think back to what I went through, I honestly cannot really remember the pain. I just feel proud of myself! You can do anything you set your mind to if you are informed, your own advocate and thinking of the future goal - and suddenly the fear will start to fall away and you will see hope!
You might want to check out the Transplant Support Forums at http://www.transplantbuddies.org/
There are tons of different perspectives of people that have had lung transplants...even people that have had TWO lung transplants, because life is so much worth living regardless of how difficult the actual procedure is.
Before you take your Mom's advice, I would contact a transplant center and at least become educated on transplant. I am not sure where you live, but Loyola in Chicago (and I'm sure other centers) offer education classes to teach you and your family all about transplant - the risks AND benefits - so you can make an educated decision. I think Mag has a great idea about asking your social worker to put you in touch with real transplant patients.
It's true that the survival rate is 50% 5 years post-transplant, however, if I can have 5 years of being able to ski, bike, hike, travel, play with my dogs and look forward to doing things with my husband and being able to breathe - I'm gonna TAKE IT! You never know, you could be part of the 50% that lives beyond 5 years out to 20+ (Yes, I know some people 20 years out!!).
Let me tell you this - I had a lobectomy in 2009 and during the recovery period of the surgery, I was in a fair amount of pain and very uncomfortable...however, when I think back to what I went through, I honestly cannot really remember the pain. I just feel proud of myself! You can do anything you set your mind to if you are informed, your own advocate and thinking of the future goal - and suddenly the fear will start to fall away and you will see hope!
Hi Cojean,
<br />You might want to check out the Transplant Support Forums at http://www.transplantbuddies.org/
<br />
<br />There are tons of different perspectives of people that have had lung transplants...even people that have had TWO lung transplants, because life is so much worth living regardless of how difficult the actual procedure is.
<br />
<br />Before you take your Mom's advice, I would contact a transplant center and at least become educated on transplant. I am not sure where you live, but Loyola in Chicago (and I'm sure other centers) offer education classes to teach you and your family all about transplant - the risks AND benefits - so you can make an educated decision. I think Mag has a great idea about asking your social worker to put you in touch with real transplant patients.
<br />
<br />It's true that the survival rate is 50% 5 years post-transplant, however, if I can have 5 years of being able to ski, bike, hike, travel, play with my dogs and look forward to doing things with my husband and being able to breathe - I'm gonna TAKE IT! You never know, you could be part of the 50% that lives beyond 5 years out to 20+ (Yes, I know some people 20 years out!!).
<br />
<br />Let me tell you this - I had a lobectomy in 2009 and during the recovery period of the surgery, I was in a fair amount of pain and very uncomfortable...however, when I think back to what I went through, I honestly cannot really remember the pain. I just feel proud of myself! You can do anything you set your mind to if you are informed, your own advocate and thinking of the future goal - and suddenly the fear will start to fall away and you will see hope!
<br />You might want to check out the Transplant Support Forums at http://www.transplantbuddies.org/
<br />
<br />There are tons of different perspectives of people that have had lung transplants...even people that have had TWO lung transplants, because life is so much worth living regardless of how difficult the actual procedure is.
<br />
<br />Before you take your Mom's advice, I would contact a transplant center and at least become educated on transplant. I am not sure where you live, but Loyola in Chicago (and I'm sure other centers) offer education classes to teach you and your family all about transplant - the risks AND benefits - so you can make an educated decision. I think Mag has a great idea about asking your social worker to put you in touch with real transplant patients.
<br />
<br />It's true that the survival rate is 50% 5 years post-transplant, however, if I can have 5 years of being able to ski, bike, hike, travel, play with my dogs and look forward to doing things with my husband and being able to breathe - I'm gonna TAKE IT! You never know, you could be part of the 50% that lives beyond 5 years out to 20+ (Yes, I know some people 20 years out!!).
<br />
<br />Let me tell you this - I had a lobectomy in 2009 and during the recovery period of the surgery, I was in a fair amount of pain and very uncomfortable...however, when I think back to what I went through, I honestly cannot really remember the pain. I just feel proud of myself! You can do anything you set your mind to if you are informed, your own advocate and thinking of the future goal - and suddenly the fear will start to fall away and you will see hope!