I'm 29 and my fev1 levels are 32 precent, recently 22%. I had the discussion with my doctor 3 yrs. ago, but now i'm getting worst. I've looked it up online and read some where that the transplant is only good for up to 5 yrs. Is that true? Or, am I better off living the next 10 yrs. sick like this?
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In need of a double lung transplant!!
- Thread starter cfsue
- Start date
I'm 29 and my fev1 levels are 32 precent, recently 22%. I had the discussion with my doctor 3 yrs. ago, but now i'm getting worst. I've looked it up online and read some where that the transplant is only good for up to 5 yrs. Is that true? Or, am I better off living the next 10 yrs. sick like this?
I'm 29 and my fev1 levels are 32 precent, recently 22%. I had the discussion with my doctor 3 yrs. ago, but now i'm getting worst. I've looked it up online and read some where that the transplant is only good for up to 5 yrs. Is that true? Or, am I better off living the next 10 yrs. sick like this?
I'm 29 and my fev1 levels are 32 precent, recently 22%. I had the discussion with my doctor 3 yrs. ago, but now i'm getting worst. I've looked it up online and read some where that the transplant is only good for up to 5 yrs. Is that true? Or, am I better off living the next 10 yrs. sick like this?
I'm 29 and my fev1 levels are 32 precent, recently 22%. I had the discussion with my doctor 3 yrs. ago, but now i'm getting worst. I've looked it up online and read some where that the transplant is only good for up to 5 yrs. Is that true? Or, am I better off living the next 10 yrs. sick like this?
saveferris2009
New member
I haven't had a tx, but I do know that statically speaking, lung tx patients live about 5 years. Some of course live many more years.
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
saveferris2009
New member
I haven't had a tx, but I do know that statically speaking, lung tx patients live about 5 years. Some of course live many more years.
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
saveferris2009
New member
I haven't had a tx, but I do know that statically speaking, lung tx patients live about 5 years. Some of course live many more years.
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
saveferris2009
New member
I haven't had a tx, but I do know that statically speaking, lung tx patients live about 5 years. Some of course live many more years.
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
Hopefully some others who are more familiar with tx can give you more insight.
Take care
saveferris2009
New member
I haven't had a tx, but I do know that statically speaking, lung tx patients live about 5 years. Some of course live many more years.
<br />
<br />Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
<br />
<br />Hopefully some others who are more familiar with tx can give you more insight.
<br />
<br />Take care
<br />
<br />Not sure how to say this tactfully, but I don't think that your lungs will hold up for 10 years with an FEV1 around 20-30%, which is probably why your docs are talking to you about tx.
<br />
<br />Hopefully some others who are more familiar with tx can give you more insight.
<br />
<br />Take care
UsualSuspect
New member
A lot of it depends on how aggressively you've approached things. If you've done everything you possibly can, but are still declining, that's one thing. If you haven't, perhaps you could stabilize more. In terms of whether or not you're better off, that really comes down to quality of life. Are you content enough to live at the level you're at now if you're able to maintain it? Everybody has different expectations they can and can't live with.
UsualSuspect
New member
A lot of it depends on how aggressively you've approached things. If you've done everything you possibly can, but are still declining, that's one thing. If you haven't, perhaps you could stabilize more. In terms of whether or not you're better off, that really comes down to quality of life. Are you content enough to live at the level you're at now if you're able to maintain it? Everybody has different expectations they can and can't live with.
UsualSuspect
New member
A lot of it depends on how aggressively you've approached things. If you've done everything you possibly can, but are still declining, that's one thing. If you haven't, perhaps you could stabilize more. In terms of whether or not you're better off, that really comes down to quality of life. Are you content enough to live at the level you're at now if you're able to maintain it? Everybody has different expectations they can and can't live with.
UsualSuspect
New member
A lot of it depends on how aggressively you've approached things. If you've done everything you possibly can, but are still declining, that's one thing. If you haven't, perhaps you could stabilize more. In terms of whether or not you're better off, that really comes down to quality of life. Are you content enough to live at the level you're at now if you're able to maintain it? Everybody has different expectations they can and can't live with.
UsualSuspect
New member
A lot of it depends on how aggressively you've approached things. If you've done everything you possibly can, but are still declining, that's one thing. If you haven't, perhaps you could stabilize more. In terms of whether or not you're better off, that really comes down to quality of life. Are you content enough to live at the level you're at now if you're able to maintain it? Everybody has different expectations they can and can't live with.
Hi. I am a mom whose daughter had a double lung transplant two years ago. Because you can find the info. on this site I will tell you up front that Anna is currently in chronic rejection. But please don't let that scare you away from considering a transplant. She would be the first to tell you.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Hi. I am a mom whose daughter had a double lung transplant two years ago. Because you can find the info. on this site I will tell you up front that Anna is currently in chronic rejection. But please don't let that scare you away from considering a transplant. She would be the first to tell you.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Hi. I am a mom whose daughter had a double lung transplant two years ago. Because you can find the info. on this site I will tell you up front that Anna is currently in chronic rejection. But please don't let that scare you away from considering a transplant. She would be the first to tell you.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Hi. I am a mom whose daughter had a double lung transplant two years ago. Because you can find the info. on this site I will tell you up front that Anna is currently in chronic rejection. But please don't let that scare you away from considering a transplant. She would be the first to tell you.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
This is the great place to be for any questions about the transplant experience. Good luck in your decision.
Hi. I am a mom whose daughter had a double lung transplant two years ago. Because you can find the info. on this site I will tell you up front that Anna is currently in chronic rejection. But please don't let that scare you away from considering a transplant. She would be the first to tell you.
<br />
<br />Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
<br />
<br /> We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
<br />
<br />Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
<br />
<br />This is the great place to be for any questions about the transplant experience. Good luck in your decision.
<br />
<br />
<br />
<br />Lung Transplants can be "good" for any number of years. You just don't know how long your body will go before it decides to reject. There are different levels of rejection, Acute 1 - 4, and Chronic. Acute can be stopped most all of the time. Chronic can happen quickly or slowly, they just don't know enough about it and how it works. Controling it, treating it seems to be trial and error. Anna did not have any issues with a single episode of rejection until she was 15 months post tx. she had A-4. She skipped right through 1-3.
<br />
<br /> We have meet several people that have had a single, double lung tx and heart/lung. Some of them doing great at 3, 5, 10, 21 years post tx, a few not so great. A bump or hurdle here or there. You just don't know. That being said, Anna has said she would do it all over again.
<br />
<br />Deciding whether to get a transplant or not is a difficult personal decision. You have to decide whether the quality of life you are living right now is what you want. If you decide to persue a transplant the program you choose for your evaluation will/should explain all the rest. How it is not a cure for CF just the CF in your lungs. How you will have to be vigilant about taking your meds at the exact time they tell you. It's not hard though. A little scary at first but you learn quickly. By the time you are released from the hospital, which by the way can be in as little as a week after your transplant, you will know all your meds.
<br />
<br />This is the great place to be for any questions about the transplant experience. Good luck in your decision.
<br />
<br />