what are the outcomes of a lung transplant?..i have heard of good outcomes but i also have heard of bad outcomes..im scared to even go through with it but my lungs are in the worst shape ever?....and what about having MRSA, will that pass to new lungs?, i also have CFRD, will that affect healing time and can it cause rejection?...i have soo many questions about it, but doctors really dont want to talk to me about it, i almost got put on the transplant list but the doctors were able to get my LEV1 up to 57%...im not sure where im at now but i know i will have to look at getting lung transplant done soon ...any suggestions on what i should do?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
what are the outcomes of a transplant?
- Thread starter sexxiej
- Start date
what are the outcomes of a lung transplant?..i have heard of good outcomes but i also have heard of bad outcomes..im scared to even go through with it but my lungs are in the worst shape ever?....and what about having MRSA, will that pass to new lungs?, i also have CFRD, will that affect healing time and can it cause rejection?...i have soo many questions about it, but doctors really dont want to talk to me about it, i almost got put on the transplant list but the doctors were able to get my LEV1 up to 57%...im not sure where im at now but i know i will have to look at getting lung transplant done soon ...any suggestions on what i should do?
what are the outcomes of a lung transplant?..i have heard of good outcomes but i also have heard of bad outcomes..im scared to even go through with it but my lungs are in the worst shape ever?....and what about having MRSA, will that pass to new lungs?, i also have CFRD, will that affect healing time and can it cause rejection?...i have soo many questions about it, but doctors really dont want to talk to me about it, i almost got put on the transplant list but the doctors were able to get my LEV1 up to 57%...im not sure where im at now but i know i will have to look at getting lung transplant done soon ...any suggestions on what i should do?
are you seen at an accredited cf center? It seems very odd that the doctors don't want to discuss your questions even if they say you're not quite at the point where you need a transplant. from my understanding there's a somewhat lengthy process to be evaluated for transplant...lots of tests to be done, evaluations, doctors to talk with, etc. there are many people here who have had transplants so hopefully they'll chime in here but i would raise a fuss until someone answers your questions!
are you seen at an accredited cf center? It seems very odd that the doctors don't want to discuss your questions even if they say you're not quite at the point where you need a transplant. from my understanding there's a somewhat lengthy process to be evaluated for transplant...lots of tests to be done, evaluations, doctors to talk with, etc. there are many people here who have had transplants so hopefully they'll chime in here but i would raise a fuss until someone answers your questions!
are you seen at an accredited cf center? It seems very odd that the doctors don't want to discuss your questions even if they say you're not quite at the point where you need a transplant. from my understanding there's a somewhat lengthy process to be evaluated for transplant...lots of tests to be done, evaluations, doctors to talk with, etc. there are many people here who have had transplants so hopefully they'll chime in here but i would raise a fuss until someone answers your questions!
coltsfan715
New member
Firstly I agree with Jaimes, your docs should be ready and willing to answer your questions. I am going to be blunt here and just say - if they are NOT you need to find docs that are, especially when it comes to transplant.
I am post transplant 3 years, pre transplant I had CFRD and also cultured MRSA, Psuedo, S.Maltophilia and some other craziness I can't remember.
I am going to give my personal experience with it. I have had 1 lung infection post transplant and that came right at my 3 year mark. The problem .... Psuedo. I have not had a single culture from any bronchoscopy I have had come back showing anything with exception of Psuedo on occasion. These same bugs we have pre transplant are still present to some degree in our sinuses post transplant, so serves to say that sometimes we can have issues with them reappearing. I will say though that getting rid of the bugs is ten thousand times easier than it ever was before, and, as mentioned, Psuedo is the only one I have had issues with. When I say easier to get rid of I mean the longest medication treatment I have taken was 1 month of TOBI and that was the the actual lung infection I had. I have not taken IV abx treatment at all in the past 3.5 years.
The diabetes issue - I was told when I was evaluated that the main concern was my diabetes and my healing. That being said my diabetes was under VERY good control at the time and I was not concerned at all. I ended up healing beautifully, honestly and truthfully the nurses and docs were all amazed at how well I healed. I think that this mostly depends on your bodies own healing abilities as well as the status of your diabetes - aka whether or not it is under control. I have had another surgery since transplant and at the time my diabetes was not well controlled and I still healed wonderfully, so that is why I say some of this boils down to your bodies natural healing ability.
There is one major thing I have learned post transplant and that is that it is very similar to life pre transplant. It can be unpredictable and ever patient is going to have a different experience. It is a lot like CF in that respect. You never know if you are going to have it easy or hard or somewhere in between, until you just do it. That is an issue you have to accept before you enter this process. It can great but it can also be very difficult. I will say that of all the people I know post transplant I think 1 person has told me they wish they had never done it. When I say all the people I know and have met that are post transplant I am talking over 100 people easily. To me that says a lot, I have seen people that have had nothing but issues and are unfortunately no longer with us, but when I asked them the last time I saw them if it was "worth it" they all said yes and that they would do it again if they could.
If I were you I would compile a list of questions as you think of them. If they are important to YOU they are important to ASK. Then from there I would have a serious heart to heart with your doc about this being something you are concerned about and you want to gather information now, so you are prepared. They need to take you seriously, even if they don't think you are there yet, they still need to listen. I would just tell them that it is frustrating because you don't feel they are interested in hearing your questions let alone answering them. It is very important that you have a team of docs that is willing to work with you and help put your mind at ease through this process, not make things more difficult.
Good Luck and keep asking questions if you have them, there is nothing wrong with it.
Lindsey
I am post transplant 3 years, pre transplant I had CFRD and also cultured MRSA, Psuedo, S.Maltophilia and some other craziness I can't remember.
I am going to give my personal experience with it. I have had 1 lung infection post transplant and that came right at my 3 year mark. The problem .... Psuedo. I have not had a single culture from any bronchoscopy I have had come back showing anything with exception of Psuedo on occasion. These same bugs we have pre transplant are still present to some degree in our sinuses post transplant, so serves to say that sometimes we can have issues with them reappearing. I will say though that getting rid of the bugs is ten thousand times easier than it ever was before, and, as mentioned, Psuedo is the only one I have had issues with. When I say easier to get rid of I mean the longest medication treatment I have taken was 1 month of TOBI and that was the the actual lung infection I had. I have not taken IV abx treatment at all in the past 3.5 years.
The diabetes issue - I was told when I was evaluated that the main concern was my diabetes and my healing. That being said my diabetes was under VERY good control at the time and I was not concerned at all. I ended up healing beautifully, honestly and truthfully the nurses and docs were all amazed at how well I healed. I think that this mostly depends on your bodies own healing abilities as well as the status of your diabetes - aka whether or not it is under control. I have had another surgery since transplant and at the time my diabetes was not well controlled and I still healed wonderfully, so that is why I say some of this boils down to your bodies natural healing ability.
There is one major thing I have learned post transplant and that is that it is very similar to life pre transplant. It can be unpredictable and ever patient is going to have a different experience. It is a lot like CF in that respect. You never know if you are going to have it easy or hard or somewhere in between, until you just do it. That is an issue you have to accept before you enter this process. It can great but it can also be very difficult. I will say that of all the people I know post transplant I think 1 person has told me they wish they had never done it. When I say all the people I know and have met that are post transplant I am talking over 100 people easily. To me that says a lot, I have seen people that have had nothing but issues and are unfortunately no longer with us, but when I asked them the last time I saw them if it was "worth it" they all said yes and that they would do it again if they could.
If I were you I would compile a list of questions as you think of them. If they are important to YOU they are important to ASK. Then from there I would have a serious heart to heart with your doc about this being something you are concerned about and you want to gather information now, so you are prepared. They need to take you seriously, even if they don't think you are there yet, they still need to listen. I would just tell them that it is frustrating because you don't feel they are interested in hearing your questions let alone answering them. It is very important that you have a team of docs that is willing to work with you and help put your mind at ease through this process, not make things more difficult.
Good Luck and keep asking questions if you have them, there is nothing wrong with it.
Lindsey
coltsfan715
New member
Firstly I agree with Jaimes, your docs should be ready and willing to answer your questions. I am going to be blunt here and just say - if they are NOT you need to find docs that are, especially when it comes to transplant.
I am post transplant 3 years, pre transplant I had CFRD and also cultured MRSA, Psuedo, S.Maltophilia and some other craziness I can't remember.
I am going to give my personal experience with it. I have had 1 lung infection post transplant and that came right at my 3 year mark. The problem .... Psuedo. I have not had a single culture from any bronchoscopy I have had come back showing anything with exception of Psuedo on occasion. These same bugs we have pre transplant are still present to some degree in our sinuses post transplant, so serves to say that sometimes we can have issues with them reappearing. I will say though that getting rid of the bugs is ten thousand times easier than it ever was before, and, as mentioned, Psuedo is the only one I have had issues with. When I say easier to get rid of I mean the longest medication treatment I have taken was 1 month of TOBI and that was the the actual lung infection I had. I have not taken IV abx treatment at all in the past 3.5 years.
The diabetes issue - I was told when I was evaluated that the main concern was my diabetes and my healing. That being said my diabetes was under VERY good control at the time and I was not concerned at all. I ended up healing beautifully, honestly and truthfully the nurses and docs were all amazed at how well I healed. I think that this mostly depends on your bodies own healing abilities as well as the status of your diabetes - aka whether or not it is under control. I have had another surgery since transplant and at the time my diabetes was not well controlled and I still healed wonderfully, so that is why I say some of this boils down to your bodies natural healing ability.
There is one major thing I have learned post transplant and that is that it is very similar to life pre transplant. It can be unpredictable and ever patient is going to have a different experience. It is a lot like CF in that respect. You never know if you are going to have it easy or hard or somewhere in between, until you just do it. That is an issue you have to accept before you enter this process. It can great but it can also be very difficult. I will say that of all the people I know post transplant I think 1 person has told me they wish they had never done it. When I say all the people I know and have met that are post transplant I am talking over 100 people easily. To me that says a lot, I have seen people that have had nothing but issues and are unfortunately no longer with us, but when I asked them the last time I saw them if it was "worth it" they all said yes and that they would do it again if they could.
If I were you I would compile a list of questions as you think of them. If they are important to YOU they are important to ASK. Then from there I would have a serious heart to heart with your doc about this being something you are concerned about and you want to gather information now, so you are prepared. They need to take you seriously, even if they don't think you are there yet, they still need to listen. I would just tell them that it is frustrating because you don't feel they are interested in hearing your questions let alone answering them. It is very important that you have a team of docs that is willing to work with you and help put your mind at ease through this process, not make things more difficult.
Good Luck and keep asking questions if you have them, there is nothing wrong with it.
Lindsey
I am post transplant 3 years, pre transplant I had CFRD and also cultured MRSA, Psuedo, S.Maltophilia and some other craziness I can't remember.
I am going to give my personal experience with it. I have had 1 lung infection post transplant and that came right at my 3 year mark. The problem .... Psuedo. I have not had a single culture from any bronchoscopy I have had come back showing anything with exception of Psuedo on occasion. These same bugs we have pre transplant are still present to some degree in our sinuses post transplant, so serves to say that sometimes we can have issues with them reappearing. I will say though that getting rid of the bugs is ten thousand times easier than it ever was before, and, as mentioned, Psuedo is the only one I have had issues with. When I say easier to get rid of I mean the longest medication treatment I have taken was 1 month of TOBI and that was the the actual lung infection I had. I have not taken IV abx treatment at all in the past 3.5 years.
The diabetes issue - I was told when I was evaluated that the main concern was my diabetes and my healing. That being said my diabetes was under VERY good control at the time and I was not concerned at all. I ended up healing beautifully, honestly and truthfully the nurses and docs were all amazed at how well I healed. I think that this mostly depends on your bodies own healing abilities as well as the status of your diabetes - aka whether or not it is under control. I have had another surgery since transplant and at the time my diabetes was not well controlled and I still healed wonderfully, so that is why I say some of this boils down to your bodies natural healing ability.
There is one major thing I have learned post transplant and that is that it is very similar to life pre transplant. It can be unpredictable and ever patient is going to have a different experience. It is a lot like CF in that respect. You never know if you are going to have it easy or hard or somewhere in between, until you just do it. That is an issue you have to accept before you enter this process. It can great but it can also be very difficult. I will say that of all the people I know post transplant I think 1 person has told me they wish they had never done it. When I say all the people I know and have met that are post transplant I am talking over 100 people easily. To me that says a lot, I have seen people that have had nothing but issues and are unfortunately no longer with us, but when I asked them the last time I saw them if it was "worth it" they all said yes and that they would do it again if they could.
If I were you I would compile a list of questions as you think of them. If they are important to YOU they are important to ASK. Then from there I would have a serious heart to heart with your doc about this being something you are concerned about and you want to gather information now, so you are prepared. They need to take you seriously, even if they don't think you are there yet, they still need to listen. I would just tell them that it is frustrating because you don't feel they are interested in hearing your questions let alone answering them. It is very important that you have a team of docs that is willing to work with you and help put your mind at ease through this process, not make things more difficult.
Good Luck and keep asking questions if you have them, there is nothing wrong with it.
Lindsey
coltsfan715
New member
Firstly I agree with Jaimes, your docs should be ready and willing to answer your questions. I am going to be blunt here and just say - if they are NOT you need to find docs that are, especially when it comes to transplant.
<br />
<br />I am post transplant 3 years, pre transplant I had CFRD and also cultured MRSA, Psuedo, S.Maltophilia and some other craziness I can't remember.
<br />
<br />I am going to give my personal experience with it. I have had 1 lung infection post transplant and that came right at my 3 year mark. The problem .... Psuedo. I have not had a single culture from any bronchoscopy I have had come back showing anything with exception of Psuedo on occasion. These same bugs we have pre transplant are still present to some degree in our sinuses post transplant, so serves to say that sometimes we can have issues with them reappearing. I will say though that getting rid of the bugs is ten thousand times easier than it ever was before, and, as mentioned, Psuedo is the only one I have had issues with. When I say easier to get rid of I mean the longest medication treatment I have taken was 1 month of TOBI and that was the the actual lung infection I had. I have not taken IV abx treatment at all in the past 3.5 years.
<br />
<br />The diabetes issue - I was told when I was evaluated that the main concern was my diabetes and my healing. That being said my diabetes was under VERY good control at the time and I was not concerned at all. I ended up healing beautifully, honestly and truthfully the nurses and docs were all amazed at how well I healed. I think that this mostly depends on your bodies own healing abilities as well as the status of your diabetes - aka whether or not it is under control. I have had another surgery since transplant and at the time my diabetes was not well controlled and I still healed wonderfully, so that is why I say some of this boils down to your bodies natural healing ability.
<br />
<br />There is one major thing I have learned post transplant and that is that it is very similar to life pre transplant. It can be unpredictable and ever patient is going to have a different experience. It is a lot like CF in that respect. You never know if you are going to have it easy or hard or somewhere in between, until you just do it. That is an issue you have to accept before you enter this process. It can great but it can also be very difficult. I will say that of all the people I know post transplant I think 1 person has told me they wish they had never done it. When I say all the people I know and have met that are post transplant I am talking over 100 people easily. To me that says a lot, I have seen people that have had nothing but issues and are unfortunately no longer with us, but when I asked them the last time I saw them if it was "worth it" they all said yes and that they would do it again if they could.
<br />
<br />If I were you I would compile a list of questions as you think of them. If they are important to YOU they are important to ASK. Then from there I would have a serious heart to heart with your doc about this being something you are concerned about and you want to gather information now, so you are prepared. They need to take you seriously, even if they don't think you are there yet, they still need to listen. I would just tell them that it is frustrating because you don't feel they are interested in hearing your questions let alone answering them. It is very important that you have a team of docs that is willing to work with you and help put your mind at ease through this process, not make things more difficult.
<br />
<br />Good Luck and keep asking questions if you have them, there is nothing wrong with it.
<br />
<br />Lindsey
<br />
<br />I am post transplant 3 years, pre transplant I had CFRD and also cultured MRSA, Psuedo, S.Maltophilia and some other craziness I can't remember.
<br />
<br />I am going to give my personal experience with it. I have had 1 lung infection post transplant and that came right at my 3 year mark. The problem .... Psuedo. I have not had a single culture from any bronchoscopy I have had come back showing anything with exception of Psuedo on occasion. These same bugs we have pre transplant are still present to some degree in our sinuses post transplant, so serves to say that sometimes we can have issues with them reappearing. I will say though that getting rid of the bugs is ten thousand times easier than it ever was before, and, as mentioned, Psuedo is the only one I have had issues with. When I say easier to get rid of I mean the longest medication treatment I have taken was 1 month of TOBI and that was the the actual lung infection I had. I have not taken IV abx treatment at all in the past 3.5 years.
<br />
<br />The diabetes issue - I was told when I was evaluated that the main concern was my diabetes and my healing. That being said my diabetes was under VERY good control at the time and I was not concerned at all. I ended up healing beautifully, honestly and truthfully the nurses and docs were all amazed at how well I healed. I think that this mostly depends on your bodies own healing abilities as well as the status of your diabetes - aka whether or not it is under control. I have had another surgery since transplant and at the time my diabetes was not well controlled and I still healed wonderfully, so that is why I say some of this boils down to your bodies natural healing ability.
<br />
<br />There is one major thing I have learned post transplant and that is that it is very similar to life pre transplant. It can be unpredictable and ever patient is going to have a different experience. It is a lot like CF in that respect. You never know if you are going to have it easy or hard or somewhere in between, until you just do it. That is an issue you have to accept before you enter this process. It can great but it can also be very difficult. I will say that of all the people I know post transplant I think 1 person has told me they wish they had never done it. When I say all the people I know and have met that are post transplant I am talking over 100 people easily. To me that says a lot, I have seen people that have had nothing but issues and are unfortunately no longer with us, but when I asked them the last time I saw them if it was "worth it" they all said yes and that they would do it again if they could.
<br />
<br />If I were you I would compile a list of questions as you think of them. If they are important to YOU they are important to ASK. Then from there I would have a serious heart to heart with your doc about this being something you are concerned about and you want to gather information now, so you are prepared. They need to take you seriously, even if they don't think you are there yet, they still need to listen. I would just tell them that it is frustrating because you don't feel they are interested in hearing your questions let alone answering them. It is very important that you have a team of docs that is willing to work with you and help put your mind at ease through this process, not make things more difficult.
<br />
<br />Good Luck and keep asking questions if you have them, there is nothing wrong with it.
<br />
<br />Lindsey