tough decision

gsplover · Nov 7, 2008

I have been in the process of being evaluated for a double lung transplant. The evaluation is done and now it is up to me to decide if the time is right to be listed. I thought I would have more help from the doctors with this decision. I was told there are some things that say get listed now and others that say wait...What?

After talking to my CF doc he said I am not responding to IV antibiotics. My lung functions are not improving from them but my FEV1s are still in the mid 30s. My docotor is concerned that the next flare up will be the thing that makes me not healthy enough for a transplant. He is afraid that I will end up on a vent and then have a harder time recovering from the transplant. Do I continue with the lungs I have until I feel they run their course or do I get listed now knowing what the future ultimately holds?

So what so I do? Has any one else been put in this situation? Any insite is appreciated.

gsplover · Nov 7, 2008

I have been in the process of being evaluated for a double lung transplant. The evaluation is done and now it is up to me to decide if the time is right to be listed. I thought I would have more help from the doctors with this decision. I was told there are some things that say get listed now and others that say wait...What?

After talking to my CF doc he said I am not responding to IV antibiotics. My lung functions are not improving from them but my FEV1s are still in the mid 30s. My docotor is concerned that the next flare up will be the thing that makes me not healthy enough for a transplant. He is afraid that I will end up on a vent and then have a harder time recovering from the transplant. Do I continue with the lungs I have until I feel they run their course or do I get listed now knowing what the future ultimately holds?

So what so I do? Has any one else been put in this situation? Any insite is appreciated.

gsplover · Nov 7, 2008

I have been in the process of being evaluated for a double lung transplant. The evaluation is done and now it is up to me to decide if the time is right to be listed. I thought I would have more help from the doctors with this decision. I was told there are some things that say get listed now and others that say wait...What?

After talking to my CF doc he said I am not responding to IV antibiotics. My lung functions are not improving from them but my FEV1s are still in the mid 30s. My docotor is concerned that the next flare up will be the thing that makes me not healthy enough for a transplant. He is afraid that I will end up on a vent and then have a harder time recovering from the transplant. Do I continue with the lungs I have until I feel they run their course or do I get listed now knowing what the future ultimately holds?

So what so I do? Has any one else been put in this situation? Any insite is appreciated.

gsplover · Nov 7, 2008

I have been in the process of being evaluated for a double lung transplant. The evaluation is done and now it is up to me to decide if the time is right to be listed. I thought I would have more help from the doctors with this decision. I was told there are some things that say get listed now and others that say wait...What?

After talking to my CF doc he said I am not responding to IV antibiotics. My lung functions are not improving from them but my FEV1s are still in the mid 30s. My docotor is concerned that the next flare up will be the thing that makes me not healthy enough for a transplant. He is afraid that I will end up on a vent and then have a harder time recovering from the transplant. Do I continue with the lungs I have until I feel they run their course or do I get listed now knowing what the future ultimately holds?

So what so I do? Has any one else been put in this situation? Any insite is appreciated.

gsplover · Nov 7, 2008

I have been in the process of being evaluated for a double lung transplant. The evaluation is done and now it is up to me to decide if the time is right to be listed. I thought I would have more help from the doctors with this decision. I was told there are some things that say get listed now and others that say wait...What?
 
 After talking to my CF doc he said I am not responding to IV antibiotics. My lung functions are not improving from them but my FEV1s are still in the mid 30s. My docotor is concerned that the next flare up will be the thing that makes me not healthy enough for a transplant. He is afraid that I will end up on a vent and then have a harder time recovering from the transplant. Do I continue with the lungs I have until I feel they run their course or do I get listed now knowing what the future ultimately holds?
 
 So what so I do? Has any one else been put in this situation? Any insite is appreciated.

Transplantmommy · Nov 7, 2008

Stephanie,
It is always your own choice to go through with this or not. I had double lung and liver transplants almost two years ago and am doing 100% better than I ever thought that I could.

As for getting listed or waiting....I say get listed now. What center are you going to and how long is the wait? I was listed when I was in the 30% lung function range (August 2006) and by the time I had the transplants (January 31, 2007), I was down to 15 percent. I was lucky and got listed early enough to where I didn't end up on the vent or anything and I was still doing some stuff on my own and was still able to walk at least a very small distance. It is VERY true that the healthier you are when you go into transplant, the better you will do after (probably not for every single case but it's better to be as healthy as possible).

I didn't exactly have a flare up right before the transplants but I coughed up about a liter of blood about 9 days before. My doctors told me that if I had another bleed like that, it would probably be the end of me and that was not easy to hear. I needed the lungs so bad that they almost took me off of the liver list just so that I could get the lungs. If I didn't get the liver, I could still wait for that and then have another transplant. We got extremely lucky and the day after this talk, we got all three organs and I had my transplants.

I know that there are probably some people who will tell you to wait, but I am not one of those people. I say get listed now because you never know what will happen. You could either majorly drop like I did or you could last a while longer with your own lungs. For me, it was not a chance I was willing to take. The wait list at my clinic is normally 3 months and I waited for 5 months. There is another lady who is going to the Cleveland Clinic for double lung and she has been waiting for 9 months. You just never know! I wish you all the best in your decision. If you have any questions you can always ask!

Transplantmommy · Nov 7, 2008

Stephanie,
It is always your own choice to go through with this or not. I had double lung and liver transplants almost two years ago and am doing 100% better than I ever thought that I could.

As for getting listed or waiting....I say get listed now. What center are you going to and how long is the wait? I was listed when I was in the 30% lung function range (August 2006) and by the time I had the transplants (January 31, 2007), I was down to 15 percent. I was lucky and got listed early enough to where I didn't end up on the vent or anything and I was still doing some stuff on my own and was still able to walk at least a very small distance. It is VERY true that the healthier you are when you go into transplant, the better you will do after (probably not for every single case but it's better to be as healthy as possible).

I didn't exactly have a flare up right before the transplants but I coughed up about a liter of blood about 9 days before. My doctors told me that if I had another bleed like that, it would probably be the end of me and that was not easy to hear. I needed the lungs so bad that they almost took me off of the liver list just so that I could get the lungs. If I didn't get the liver, I could still wait for that and then have another transplant. We got extremely lucky and the day after this talk, we got all three organs and I had my transplants.

I know that there are probably some people who will tell you to wait, but I am not one of those people. I say get listed now because you never know what will happen. You could either majorly drop like I did or you could last a while longer with your own lungs. For me, it was not a chance I was willing to take. The wait list at my clinic is normally 3 months and I waited for 5 months. There is another lady who is going to the Cleveland Clinic for double lung and she has been waiting for 9 months. You just never know! I wish you all the best in your decision. If you have any questions you can always ask!

Transplantmommy · Nov 7, 2008

Stephanie,
It is always your own choice to go through with this or not. I had double lung and liver transplants almost two years ago and am doing 100% better than I ever thought that I could.

As for getting listed or waiting....I say get listed now. What center are you going to and how long is the wait? I was listed when I was in the 30% lung function range (August 2006) and by the time I had the transplants (January 31, 2007), I was down to 15 percent. I was lucky and got listed early enough to where I didn't end up on the vent or anything and I was still doing some stuff on my own and was still able to walk at least a very small distance. It is VERY true that the healthier you are when you go into transplant, the better you will do after (probably not for every single case but it's better to be as healthy as possible).

I didn't exactly have a flare up right before the transplants but I coughed up about a liter of blood about 9 days before. My doctors told me that if I had another bleed like that, it would probably be the end of me and that was not easy to hear. I needed the lungs so bad that they almost took me off of the liver list just so that I could get the lungs. If I didn't get the liver, I could still wait for that and then have another transplant. We got extremely lucky and the day after this talk, we got all three organs and I had my transplants.

I know that there are probably some people who will tell you to wait, but I am not one of those people. I say get listed now because you never know what will happen. You could either majorly drop like I did or you could last a while longer with your own lungs. For me, it was not a chance I was willing to take. The wait list at my clinic is normally 3 months and I waited for 5 months. There is another lady who is going to the Cleveland Clinic for double lung and she has been waiting for 9 months. You just never know! I wish you all the best in your decision. If you have any questions you can always ask!

Transplantmommy · Nov 7, 2008

Stephanie,
It is always your own choice to go through with this or not. I had double lung and liver transplants almost two years ago and am doing 100% better than I ever thought that I could.

As for getting listed or waiting....I say get listed now. What center are you going to and how long is the wait? I was listed when I was in the 30% lung function range (August 2006) and by the time I had the transplants (January 31, 2007), I was down to 15 percent. I was lucky and got listed early enough to where I didn't end up on the vent or anything and I was still doing some stuff on my own and was still able to walk at least a very small distance. It is VERY true that the healthier you are when you go into transplant, the better you will do after (probably not for every single case but it's better to be as healthy as possible).

I didn't exactly have a flare up right before the transplants but I coughed up about a liter of blood about 9 days before. My doctors told me that if I had another bleed like that, it would probably be the end of me and that was not easy to hear. I needed the lungs so bad that they almost took me off of the liver list just so that I could get the lungs. If I didn't get the liver, I could still wait for that and then have another transplant. We got extremely lucky and the day after this talk, we got all three organs and I had my transplants.

I know that there are probably some people who will tell you to wait, but I am not one of those people. I say get listed now because you never know what will happen. You could either majorly drop like I did or you could last a while longer with your own lungs. For me, it was not a chance I was willing to take. The wait list at my clinic is normally 3 months and I waited for 5 months. There is another lady who is going to the Cleveland Clinic for double lung and she has been waiting for 9 months. You just never know! I wish you all the best in your decision. If you have any questions you can always ask!

Transplantmommy · Nov 7, 2008

Stephanie,
 It is always your own choice to go through with this or not. I had double lung and liver transplants almost two years ago and am doing 100% better than I ever thought that I could.
 
 As for getting listed or waiting....I say get listed now. What center are you going to and how long is the wait? I was listed when I was in the 30% lung function range (August 2006) and by the time I had the transplants (January 31, 2007), I was down to 15 percent. I was lucky and got listed early enough to where I didn't end up on the vent or anything and I was still doing some stuff on my own and was still able to walk at least a very small distance. It is VERY true that the healthier you are when you go into transplant, the better you will do after (probably not for every single case but it's better to be as healthy as possible).
 
 I didn't exactly have a flare up right before the transplants but I coughed up about a liter of blood about 9 days before. My doctors told me that if I had another bleed like that, it would probably be the end of me and that was not easy to hear. I needed the lungs so bad that they almost took me off of the liver list just so that I could get the lungs. If I didn't get the liver, I could still wait for that and then have another transplant. We got extremely lucky and the day after this talk, we got all three organs and I had my transplants.
 
 I know that there are probably some people who will tell you to wait, but I am not one of those people. I say get listed now because you never know what will happen. You could either majorly drop like I did or you could last a while longer with your own lungs. For me, it was not a chance I was willing to take. The wait list at my clinic is normally 3 months and I waited for 5 months. There is another lady who is going to the Cleveland Clinic for double lung and she has been waiting for 9 months. You just never know! I wish you all the best in your decision. If you have any questions you can always ask!

gsplover · Nov 7, 2008

I know I want to have the transplant but my FEV1s are higher than most people that get a transplant. I almost feel like I am being selfish. Some people live a long time with the FEV1s I have but are they really living? I do want to live. I am sick of getting out of breath walking up stairs and not being able to do the things that I use to love to do. I just got of IVs last week and I feel junky and have a fever...Is this normal? Most days I can't walk 50 feet to my car without becoming out of breath. I don't want to do this anymore. I want to live the life that I use to live. I was so healthy for so long I feel like I am over reacting. I have had a rapid decline in the past 1 1/2 year and don't think I can risk not being listed.

gsplover · Nov 7, 2008

I know I want to have the transplant but my FEV1s are higher than most people that get a transplant. I almost feel like I am being selfish. Some people live a long time with the FEV1s I have but are they really living? I do want to live. I am sick of getting out of breath walking up stairs and not being able to do the things that I use to love to do. I just got of IVs last week and I feel junky and have a fever...Is this normal? Most days I can't walk 50 feet to my car without becoming out of breath. I don't want to do this anymore. I want to live the life that I use to live. I was so healthy for so long I feel like I am over reacting. I have had a rapid decline in the past 1 1/2 year and don't think I can risk not being listed.

gsplover · Nov 7, 2008

I know I want to have the transplant but my FEV1s are higher than most people that get a transplant. I almost feel like I am being selfish. Some people live a long time with the FEV1s I have but are they really living? I do want to live. I am sick of getting out of breath walking up stairs and not being able to do the things that I use to love to do. I just got of IVs last week and I feel junky and have a fever...Is this normal? Most days I can't walk 50 feet to my car without becoming out of breath. I don't want to do this anymore. I want to live the life that I use to live. I was so healthy for so long I feel like I am over reacting. I have had a rapid decline in the past 1 1/2 year and don't think I can risk not being listed.

gsplover · Nov 7, 2008

I know I want to have the transplant but my FEV1s are higher than most people that get a transplant. I almost feel like I am being selfish. Some people live a long time with the FEV1s I have but are they really living? I do want to live. I am sick of getting out of breath walking up stairs and not being able to do the things that I use to love to do. I just got of IVs last week and I feel junky and have a fever...Is this normal? Most days I can't walk 50 feet to my car without becoming out of breath. I don't want to do this anymore. I want to live the life that I use to live. I was so healthy for so long I feel like I am over reacting. I have had a rapid decline in the past 1 1/2 year and don't think I can risk not being listed.

gsplover · Nov 7, 2008

I know I want to have the transplant but my FEV1s are higher than most people that get a transplant. I almost feel like I am being selfish. Some people live a long time with the FEV1s I have but are they really living? I do want to live. I am sick of getting out of breath walking up stairs and not being able to do the things that I use to love to do. I just got of IVs last week and I feel junky and have a fever...Is this normal? Most days I can't walk 50 feet to my car without becoming out of breath. I don't want to do this anymore. I want to live the life that I use to live. I was so healthy for so long I feel like I am over reacting. I have had a rapid decline in the past 1 1/2 year and don't think I can risk not being listed.

beleache · Nov 7, 2008

Hey Stephanie,

I think you answered your own question..

Im sure a very tough decision for anyone.. Have you gone on the transplant category? Did you talk to Risa (EnergyGal, i hope you dont mind Risa) I know she has lots of info , and others like Patti, and others that have gone through the process..

I hope God gives you peace with your decision .. Oh and your are just as important as anyone please dont feel selfish..

{{{{{Hugs}}}}} to you .. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Nov 7, 2008

Hey Stephanie,

I think you answered your own question..

Im sure a very tough decision for anyone.. Have you gone on the transplant category? Did you talk to Risa (EnergyGal, i hope you dont mind Risa) I know she has lots of info , and others like Patti, and others that have gone through the process..

I hope God gives you peace with your decision .. Oh and your are just as important as anyone please dont feel selfish..

{{{{{Hugs}}}}} to you .. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Nov 7, 2008

Hey Stephanie,

I think you answered your own question..

Im sure a very tough decision for anyone.. Have you gone on the transplant category? Did you talk to Risa (EnergyGal, i hope you dont mind Risa) I know she has lots of info , and others like Patti, and others that have gone through the process..

I hope God gives you peace with your decision .. Oh and your are just as important as anyone please dont feel selfish..

{{{{{Hugs}}}}} to you .. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Nov 7, 2008

Hey Stephanie,

I think you answered your own question..

Im sure a very tough decision for anyone.. Have you gone on the transplant category? Did you talk to Risa (EnergyGal, i hope you dont mind Risa) I know she has lots of info , and others like Patti, and others that have gone through the process..

I hope God gives you peace with your decision .. Oh and your are just as important as anyone please dont feel selfish..

{{{{{Hugs}}}}} to you .. <img src="i/expressions/heart.gif" border="0"> joni

beleache · Nov 7, 2008

Hey Stephanie,
 
 I think you answered your own question..
 
 Im sure a very tough decision for anyone.. Have you gone on the transplant category? Did you talk to Risa (EnergyGal, i hope you dont mind Risa) I know she has lots of info , and others like Patti, and others that have gone through the process..
 
 I hope God gives you peace with your decision .. Oh and your are just as important as anyone please dont feel selfish..
 
 {{{{{Hugs}}}}} to you .. <img src="i/expressions/heart.gif" border="0"> joni

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