In need of a double lung transplant!!

rubyroselee · Aug 17, 2009

I do believe the life expectancy post-tx is 5 years on average, although remember a lot of people do well even longer than that. I have two good friends post-tx, one is 17 years out, the other is 15. Both have since had kidney tx's due to the medications from the lung tx, but both are doing well. It's completely a personal choice though whether you want to have a tx or not, and it's definitely not an easy one.

rubyroselee · Aug 17, 2009

I do believe the life expectancy post-tx is 5 years on average, although remember a lot of people do well even longer than that. I have two good friends post-tx, one is 17 years out, the other is 15. Both have since had kidney tx's due to the medications from the lung tx, but both are doing well. It's completely a personal choice though whether you want to have a tx or not, and it's definitely not an easy one.

rubyroselee · Aug 17, 2009

I do believe the life expectancy post-tx is 5 years on average, although remember a lot of people do well even longer than that. I have two good friends post-tx, one is 17 years out, the other is 15. Both have since had kidney tx's due to the medications from the lung tx, but both are doing well. It's completely a personal choice though whether you want to have a tx or not, and it's definitely not an easy one.

rubyroselee · Aug 17, 2009

I do believe the life expectancy post-tx is 5 years on average, although remember a lot of people do well even longer than that. I have two good friends post-tx, one is 17 years out, the other is 15. Both have since had kidney tx's due to the medications from the lung tx, but both are doing well. It's completely a personal choice though whether you want to have a tx or not, and it's definitely not an easy one.

rubyroselee · Aug 17, 2009

I do believe the life expectancy post-tx is 5 years on average, although remember a lot of people do well even longer than that. I have two good friends post-tx, one is 17 years out, the other is 15. Both have since had kidney tx's due to the medications from the lung tx, but both are doing well. It's completely a personal choice though whether you want to have a tx or not, and it's definitely not an easy one.

erock77 · Aug 17, 2009

I was just at the CFRI adult retreat last week. Six of the CF'ers there are post-transplant, one of them 12 years post-tx, which means it was done in 1997. I'm sure they've gotten better at it. On the other hand I had 2 friends where it didn't work out so well.
From what I've heard it's a life change, post-tx people often feel great and start being really active, it's less maintenance then CF, but it takes more diligent care. You'll be on immuno-suppressant drugs so will be instructed to be very careful about germs. The people I know try to avoid crowds and airplanes, it's debilitating in that way but you could get a second chance on life to do things you never could.
Do your research and make sure you go to a reputable transplant hospital with lots of experience and good statistics. You'll need to live with someone to help you at least the first couple months.
You should be able to get all your questions answered by the Tx docs.
Good luck!

erock77 · Aug 17, 2009

I was just at the CFRI adult retreat last week. Six of the CF'ers there are post-transplant, one of them 12 years post-tx, which means it was done in 1997. I'm sure they've gotten better at it. On the other hand I had 2 friends where it didn't work out so well.
From what I've heard it's a life change, post-tx people often feel great and start being really active, it's less maintenance then CF, but it takes more diligent care. You'll be on immuno-suppressant drugs so will be instructed to be very careful about germs. The people I know try to avoid crowds and airplanes, it's debilitating in that way but you could get a second chance on life to do things you never could.
Do your research and make sure you go to a reputable transplant hospital with lots of experience and good statistics. You'll need to live with someone to help you at least the first couple months.
You should be able to get all your questions answered by the Tx docs.
Good luck!

erock77 · Aug 17, 2009

I was just at the CFRI adult retreat last week. Six of the CF'ers there are post-transplant, one of them 12 years post-tx, which means it was done in 1997. I'm sure they've gotten better at it. On the other hand I had 2 friends where it didn't work out so well.
From what I've heard it's a life change, post-tx people often feel great and start being really active, it's less maintenance then CF, but it takes more diligent care. You'll be on immuno-suppressant drugs so will be instructed to be very careful about germs. The people I know try to avoid crowds and airplanes, it's debilitating in that way but you could get a second chance on life to do things you never could.
Do your research and make sure you go to a reputable transplant hospital with lots of experience and good statistics. You'll need to live with someone to help you at least the first couple months.
You should be able to get all your questions answered by the Tx docs.
Good luck!

erock77 · Aug 17, 2009

I was just at the CFRI adult retreat last week. Six of the CF'ers there are post-transplant, one of them 12 years post-tx, which means it was done in 1997. I'm sure they've gotten better at it. On the other hand I had 2 friends where it didn't work out so well.
From what I've heard it's a life change, post-tx people often feel great and start being really active, it's less maintenance then CF, but it takes more diligent care. You'll be on immuno-suppressant drugs so will be instructed to be very careful about germs. The people I know try to avoid crowds and airplanes, it's debilitating in that way but you could get a second chance on life to do things you never could.
Do your research and make sure you go to a reputable transplant hospital with lots of experience and good statistics. You'll need to live with someone to help you at least the first couple months.
You should be able to get all your questions answered by the Tx docs.
Good luck!

erock77 · Aug 17, 2009

I was just at the CFRI adult retreat last week. Six of the CF'ers there are post-transplant, one of them 12 years post-tx, which means it was done in 1997. I'm sure they've gotten better at it. On the other hand I had 2 friends where it didn't work out so well.
 From what I've heard it's a life change, post-tx people often feel great and start being really active, it's less maintenance then CF, but it takes more diligent care. You'll be on immuno-suppressant drugs so will be instructed to be very careful about germs. The people I know try to avoid crowds and airplanes, it's debilitating in that way but you could get a second chance on life to do things you never could.
 Do your research and make sure you go to a reputable transplant hospital with lots of experience and good statistics. You'll need to live with someone to help you at least the first couple months.
 You should be able to get all your questions answered by the Tx docs.
 Good luck!

senatorgraham · Aug 17, 2009

I am 6 years out from my transplant in December of 2002, and am doing great. I gradauted from law school in June, and don't have any regrets about getting the tx.

However, as was previously stated getting tx is a very personal choice, and gathering info here and other places is the best way to educate oneself about your options.

Life after tx for me has been great but I also know those who have had complications. My advice, don't worry about the statistics at all.

Look at your specific situation, consult your doctors, and others who have had the experience, weigh what everyone tells you, and then make the best, informed decission for you.

senatorgraham · Aug 17, 2009

I am 6 years out from my transplant in December of 2002, and am doing great. I gradauted from law school in June, and don't have any regrets about getting the tx.

However, as was previously stated getting tx is a very personal choice, and gathering info here and other places is the best way to educate oneself about your options.

Life after tx for me has been great but I also know those who have had complications. My advice, don't worry about the statistics at all.

Look at your specific situation, consult your doctors, and others who have had the experience, weigh what everyone tells you, and then make the best, informed decission for you.

senatorgraham · Aug 17, 2009

I am 6 years out from my transplant in December of 2002, and am doing great. I gradauted from law school in June, and don't have any regrets about getting the tx.

However, as was previously stated getting tx is a very personal choice, and gathering info here and other places is the best way to educate oneself about your options.

Life after tx for me has been great but I also know those who have had complications. My advice, don't worry about the statistics at all.

Look at your specific situation, consult your doctors, and others who have had the experience, weigh what everyone tells you, and then make the best, informed decission for you.

senatorgraham · Aug 17, 2009

I am 6 years out from my transplant in December of 2002, and am doing great. I gradauted from law school in June, and don't have any regrets about getting the tx.

However, as was previously stated getting tx is a very personal choice, and gathering info here and other places is the best way to educate oneself about your options.

Life after tx for me has been great but I also know those who have had complications. My advice, don't worry about the statistics at all.

Look at your specific situation, consult your doctors, and others who have had the experience, weigh what everyone tells you, and then make the best, informed decission for you.

senatorgraham · Aug 17, 2009

I am 6 years out from my transplant in December of 2002, and am doing great. I gradauted from law school in June, and don't have any regrets about getting the tx.
 
 However, as was previously stated getting tx is a very personal choice, and gathering info here and other places is the best way to educate oneself about your options.
 
 Life after tx for me has been great but I also know those who have had complications. My advice, don't worry about the statistics at all.
 
 Look at your specific situation, consult your doctors, and others who have had the experience, weigh what everyone tells you, and then make the best, informed decission for you.

coltsfan715 · Aug 18, 2009

Have to say it is completely worth it and though statistically yes about 50% of people do not make it past 5 yrs post you also have to consider who all is getting transplanted. This is not just CF patients. You are talking 60 year old people as well. I have seen several friends with CF have transplants and not do well and not make it past a few years. I have also seen 50 and 60 year old people get transplanted and do fine transplant wise and die from a heart attack after 2 years. They didn't make it past 5 yrs but it wasn't cause of their lungs.

I personally am 2.5 yrs out and haven't had any major issues. I did have 1 episode of acute rejection that showed up at my second annual so about 24 months post. I had NO symptoms at all. I just had a bronch and it showed up there.

As for it being debilitating I disagree. It is as debilitating as you allow it to be. I have done more in the past 2 years than I did in the 5 yrs pre transplant. I have gone to an NHL Allstar game. 3 NFL games, 5 huge concerts, flown once, gone to Disney World a handful of times and so on. I am careful but I do not wear my mask everywhere. I only wear a mask if I am going to a hospital. It has been a more liberating experience. Of course at first it is something you need to be careful with but in the long run I think having common sense is the key. I have not had any lung related problems since my transplant despite my not wearing a mask. I have been hospitalized 4 times for 2 days each time. Once was because my blood sugar crashed and I passed out and lay in my house unconscious for 3-4 hrs before anyone found me (so not lung related), another was a UTI that made me extremely sick (possibly immunosuppression related) and the other two times were for unknown stomach illness and dehydration.

I will say the decision is a very personal one but I would talk to a transplant center and team before you make your decision. I would ask ALL of the questions you have and get the information you need to make a decision you feel comfy with. That being said if you go by strictly weighing the pros and cons you probably won't be able to make a decision because they are pretty balanced. I personally decided to go for it even though I was completely opposed to it at first because I wanted to have more time with my family friends and fiance. Thus far it has been 2.5 fantastic years and there is no reason for me to feel I won't make it past the 5 yr mark .. at least not at this point. Even so though if I woke up tomorrow and was needing to be retransplanted I would do it no hesitation.

I wish you the best of luck in making your decision and if you ever just want to talk you can email me at divawithwings@gmail.com. I mean talk about anything. I know that this whole process if very stressful and isolating and it sometimes helps to just have someone to talk too.

Take Care,
Lindsey

coltsfan715 · Aug 18, 2009

Have to say it is completely worth it and though statistically yes about 50% of people do not make it past 5 yrs post you also have to consider who all is getting transplanted. This is not just CF patients. You are talking 60 year old people as well. I have seen several friends with CF have transplants and not do well and not make it past a few years. I have also seen 50 and 60 year old people get transplanted and do fine transplant wise and die from a heart attack after 2 years. They didn't make it past 5 yrs but it wasn't cause of their lungs.

I personally am 2.5 yrs out and haven't had any major issues. I did have 1 episode of acute rejection that showed up at my second annual so about 24 months post. I had NO symptoms at all. I just had a bronch and it showed up there.

As for it being debilitating I disagree. It is as debilitating as you allow it to be. I have done more in the past 2 years than I did in the 5 yrs pre transplant. I have gone to an NHL Allstar game. 3 NFL games, 5 huge concerts, flown once, gone to Disney World a handful of times and so on. I am careful but I do not wear my mask everywhere. I only wear a mask if I am going to a hospital. It has been a more liberating experience. Of course at first it is something you need to be careful with but in the long run I think having common sense is the key. I have not had any lung related problems since my transplant despite my not wearing a mask. I have been hospitalized 4 times for 2 days each time. Once was because my blood sugar crashed and I passed out and lay in my house unconscious for 3-4 hrs before anyone found me (so not lung related), another was a UTI that made me extremely sick (possibly immunosuppression related) and the other two times were for unknown stomach illness and dehydration.

I will say the decision is a very personal one but I would talk to a transplant center and team before you make your decision. I would ask ALL of the questions you have and get the information you need to make a decision you feel comfy with. That being said if you go by strictly weighing the pros and cons you probably won't be able to make a decision because they are pretty balanced. I personally decided to go for it even though I was completely opposed to it at first because I wanted to have more time with my family friends and fiance. Thus far it has been 2.5 fantastic years and there is no reason for me to feel I won't make it past the 5 yr mark .. at least not at this point. Even so though if I woke up tomorrow and was needing to be retransplanted I would do it no hesitation.

I wish you the best of luck in making your decision and if you ever just want to talk you can email me at divawithwings@gmail.com. I mean talk about anything. I know that this whole process if very stressful and isolating and it sometimes helps to just have someone to talk too.

Take Care,
Lindsey

coltsfan715 · Aug 18, 2009

Have to say it is completely worth it and though statistically yes about 50% of people do not make it past 5 yrs post you also have to consider who all is getting transplanted. This is not just CF patients. You are talking 60 year old people as well. I have seen several friends with CF have transplants and not do well and not make it past a few years. I have also seen 50 and 60 year old people get transplanted and do fine transplant wise and die from a heart attack after 2 years. They didn't make it past 5 yrs but it wasn't cause of their lungs.

I personally am 2.5 yrs out and haven't had any major issues. I did have 1 episode of acute rejection that showed up at my second annual so about 24 months post. I had NO symptoms at all. I just had a bronch and it showed up there.

As for it being debilitating I disagree. It is as debilitating as you allow it to be. I have done more in the past 2 years than I did in the 5 yrs pre transplant. I have gone to an NHL Allstar game. 3 NFL games, 5 huge concerts, flown once, gone to Disney World a handful of times and so on. I am careful but I do not wear my mask everywhere. I only wear a mask if I am going to a hospital. It has been a more liberating experience. Of course at first it is something you need to be careful with but in the long run I think having common sense is the key. I have not had any lung related problems since my transplant despite my not wearing a mask. I have been hospitalized 4 times for 2 days each time. Once was because my blood sugar crashed and I passed out and lay in my house unconscious for 3-4 hrs before anyone found me (so not lung related), another was a UTI that made me extremely sick (possibly immunosuppression related) and the other two times were for unknown stomach illness and dehydration.

I will say the decision is a very personal one but I would talk to a transplant center and team before you make your decision. I would ask ALL of the questions you have and get the information you need to make a decision you feel comfy with. That being said if you go by strictly weighing the pros and cons you probably won't be able to make a decision because they are pretty balanced. I personally decided to go for it even though I was completely opposed to it at first because I wanted to have more time with my family friends and fiance. Thus far it has been 2.5 fantastic years and there is no reason for me to feel I won't make it past the 5 yr mark .. at least not at this point. Even so though if I woke up tomorrow and was needing to be retransplanted I would do it no hesitation.

I wish you the best of luck in making your decision and if you ever just want to talk you can email me at divawithwings@gmail.com. I mean talk about anything. I know that this whole process if very stressful and isolating and it sometimes helps to just have someone to talk too.

Take Care,
Lindsey

coltsfan715 · Aug 18, 2009

Have to say it is completely worth it and though statistically yes about 50% of people do not make it past 5 yrs post you also have to consider who all is getting transplanted. This is not just CF patients. You are talking 60 year old people as well. I have seen several friends with CF have transplants and not do well and not make it past a few years. I have also seen 50 and 60 year old people get transplanted and do fine transplant wise and die from a heart attack after 2 years. They didn't make it past 5 yrs but it wasn't cause of their lungs.

I personally am 2.5 yrs out and haven't had any major issues. I did have 1 episode of acute rejection that showed up at my second annual so about 24 months post. I had NO symptoms at all. I just had a bronch and it showed up there.

As for it being debilitating I disagree. It is as debilitating as you allow it to be. I have done more in the past 2 years than I did in the 5 yrs pre transplant. I have gone to an NHL Allstar game. 3 NFL games, 5 huge concerts, flown once, gone to Disney World a handful of times and so on. I am careful but I do not wear my mask everywhere. I only wear a mask if I am going to a hospital. It has been a more liberating experience. Of course at first it is something you need to be careful with but in the long run I think having common sense is the key. I have not had any lung related problems since my transplant despite my not wearing a mask. I have been hospitalized 4 times for 2 days each time. Once was because my blood sugar crashed and I passed out and lay in my house unconscious for 3-4 hrs before anyone found me (so not lung related), another was a UTI that made me extremely sick (possibly immunosuppression related) and the other two times were for unknown stomach illness and dehydration.

I will say the decision is a very personal one but I would talk to a transplant center and team before you make your decision. I would ask ALL of the questions you have and get the information you need to make a decision you feel comfy with. That being said if you go by strictly weighing the pros and cons you probably won't be able to make a decision because they are pretty balanced. I personally decided to go for it even though I was completely opposed to it at first because I wanted to have more time with my family friends and fiance. Thus far it has been 2.5 fantastic years and there is no reason for me to feel I won't make it past the 5 yr mark .. at least not at this point. Even so though if I woke up tomorrow and was needing to be retransplanted I would do it no hesitation.

I wish you the best of luck in making your decision and if you ever just want to talk you can email me at divawithwings@gmail.com. I mean talk about anything. I know that this whole process if very stressful and isolating and it sometimes helps to just have someone to talk too.

Take Care,
Lindsey

coltsfan715 · Aug 18, 2009

Have to say it is completely worth it and though statistically yes about 50% of people do not make it past 5 yrs post you also have to consider who all is getting transplanted. This is not just CF patients. You are talking 60 year old people as well. I have seen several friends with CF have transplants and not do well and not make it past a few years. I have also seen 50 and 60 year old people get transplanted and do fine transplant wise and die from a heart attack after 2 years. They didn't make it past 5 yrs but it wasn't cause of their lungs.
 
 I personally am 2.5 yrs out and haven't had any major issues. I did have 1 episode of acute rejection that showed up at my second annual so about 24 months post. I had NO symptoms at all. I just had a bronch and it showed up there.
 
 As for it being debilitating I disagree. It is as debilitating as you allow it to be. I have done more in the past 2 years than I did in the 5 yrs pre transplant. I have gone to an NHL Allstar game. 3 NFL games, 5 huge concerts, flown once, gone to Disney World a handful of times and so on. I am careful but I do not wear my mask everywhere. I only wear a mask if I am going to a hospital. It has been a more liberating experience. Of course at first it is something you need to be careful with but in the long run I think having common sense is the key. I have not had any lung related problems since my transplant despite my not wearing a mask. I have been hospitalized 4 times for 2 days each time. Once was because my blood sugar crashed and I passed out and lay in my house unconscious for 3-4 hrs before anyone found me (so not lung related), another was a UTI that made me extremely sick (possibly immunosuppression related) and the other two times were for unknown stomach illness and dehydration.
 
 I will say the decision is a very personal one but I would talk to a transplant center and team before you make your decision. I would ask ALL of the questions you have and get the information you need to make a decision you feel comfy with. That being said if you go by strictly weighing the pros and cons you probably won't be able to make a decision because they are pretty balanced. I personally decided to go for it even though I was completely opposed to it at first because I wanted to have more time with my family friends and fiance. Thus far it has been 2.5 fantastic years and there is no reason for me to feel I won't make it past the 5 yr mark .. at least not at this point. Even so though if I woke up tomorrow and was needing to be retransplanted I would do it no hesitation.
 
 I wish you the best of luck in making your decision and if you ever just want to talk you can email me at divawithwings@gmail.com. I mean talk about anything. I know that this whole process if very stressful and isolating and it sometimes helps to just have someone to talk too.
 
 Take Care,
 Lindsey

In need of a double lung transplant!!

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