When to go on the transplant list

Daverog75 · Sep 15, 2011

Hello Everybody,
 
I am having trouble deciding if I should go on the list or not. My health started to decline about 5 years ago I was working full time when this started but eventually had to quit and go on government disability. After I quit and was able to rest and just take care of myself my health has stabalized. My lung function is at 29% and I don't need oxygen. The reason I am considering this is that my finances are not in good shape. My wife works full time but it is still not enough so the main why I would do this now is to get back to work full time. 
 
I am just struggling a little with this decision. I am not sure if I should take the risk that come's with transplant just to get back to work full time. Just wondering if there is anybody out there in the same situation.
 
Thanks,
 
Dave, 36 and was diagnosed at 22.

Daverog75 · Sep 15, 2011

Hello Everybody,

I am having trouble deciding if I should go on the list or not. My health started to decline about 5 years ago I was working full time when this started but eventually had to quit and go on government disability. After I quit and was able to rest and just take care of myself my health has stabalized. My lung function is at 29% and I don't need oxygen. The reason I am considering this is that my finances are not in good shape. My wife works full time but it is still not enough so the main why I would do this now is to get back to work full time. 

I am just struggling a little with this decision. I am not sure if I should take the risk that come's with transplant just to get back to work full time. Just wondering if there is anybody out there in the same situation.

Thanks,

Dave, 36 and was diagnosed at 22.

Daverog75 · Sep 15, 2011

Hello Everybody,

I am having trouble deciding if I should go on the list or not. My health started to decline about 5 years ago I was working full time when this started but eventually had to quit and go on government disability. After I quit and was able to rest and just take care of myself my health has stabalized. My lung function is at 29% and I don't need oxygen. The reason I am considering this is that my finances are not in good shape. My wife works full time but it is still not enough so the main why I would do this now is to get back to work full time. 

I am just struggling a little with this decision. I am not sure if I should take the risk that come's with transplant just to get back to work full time. Just wondering if there is anybody out there in the same situation.

Thanks,

Dave, 36 and was diagnosed at 22.

beautifulsoul · Sep 17, 2011

Hi there,

I'm not in the same situation that you are in. I've already been transplanted. But, I'll give you some input here. Have you discussed this with your doctor yet? Usually the doctor will bring this issue up FIRST if your health continues to decline. After your doctor explain's their reasoning then it would be YOUR decision from there. I know, it's a tough topic to think about. New medications/treatments are becoming available each year, making transplants more and more common. Unfortunately, waiting for a donor is the hardest part of the process. It does take a while to fully recover from the surgery. For me physically and mentally. In my personal opinion and in my situation, it was definitely worth all the trouble I went through just to be here today. I took the risk because I thought I had nothing to lose and look where I am now <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs to You

beautifulsoul · Sep 17, 2011

Hi there,

I'm not in the same situation that you are in. I've already been transplanted. But, I'll give you some input here. Have you discussed this with your doctor yet? Usually the doctor will bring this issue up FIRST if your health continues to decline. After your doctor explain's their reasoning then it would be YOUR decision from there. I know, it's a tough topic to think about. New medications/treatments are becoming available each year, making transplants more and more common. Unfortunately, waiting for a donor is the hardest part of the process. It does take a while to fully recover from the surgery. For me physically and mentally. In my personal opinion and in my situation, it was definitely worth all the trouble I went through just to be here today. I took the risk because I thought I had nothing to lose and look where I am now <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs to You

beautifulsoul · Sep 17, 2011

Hi there,
 
 I'm not in the same situation that you are in. I've already been transplanted. But, I'll give you some input here. Have you discussed this with your doctor yet? Usually the doctor will bring this issue up FIRST if your health continues to decline. After your doctor explain's their reasoning then it would be YOUR decision from there. I know, it's a tough topic to think about. New medications/treatments are becoming available each year, making transplants more and more common. Unfortunately, waiting for a donor is the hardest part of the process. It does take a while to fully recover from the surgery. For me physically and mentally. In my personal opinion and in my situation, it was definitely worth all the trouble I went through just to be here today. I took the risk because I thought I had nothing to lose and look where I am now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Hugs to You

Daverog75 · Sep 17, 2011

Thank you for the reply Amber.
 
I guess should have provided some more info in my initial post. I have talked to my doc many times about this, and I have been through the Screaning process about 4 years ago. I also have an indentical twin brother who was transplanted 3 years ago so I have seen the recovery and know what is in store for me. 
 
The hard part I am having is that my lung function is 29% but I feel fine everyday. When I am up to it I can even play 18 holes of golf as long as I have power cart. I had some trouble in mid May and was on IV's for a month my lung function dropped to 23%, and just taking a shower was difficult. I am on the fence because I feel well enough to play golf sometimes but I know that I am one more infection away from having 23 % permanently, and will definitely have to be listed.
 
Dave 36 w/cf

Daverog75 · Sep 17, 2011

Thank you for the reply Amber.

I guess should have provided some more info in my initial post. I have talked to my doc many times about this, and I have been through the Screaning process about 4 years ago. I also have an indentical twin brother who was transplanted 3 years ago so I have seen the recovery and know what is in store for me. 

The hard part I am having is that my lung function is 29% but I feel fine everyday. When I am up to it I can even play 18 holes of golf as long as I have power cart. I had some trouble in mid May and was on IV's for a month my lung function dropped to 23%, and just taking a shower was difficult. I am on the fence because I feel well enough to play golf sometimes but I know that I am one more infection away from having 23 % permanently, and will definitely have to be listed.

Dave 36 w/cf

Daverog75 · Sep 17, 2011

Thank you for the reply Amber.

I guess should have provided some more info in my initial post. I have talked to my doc many times about this, and I have been through the Screaning process about 4 years ago. I also have an indentical twin brother who was transplanted 3 years ago so I have seen the recovery and know what is in store for me. 

The hard part I am having is that my lung function is 29% but I feel fine everyday. When I am up to it I can even play 18 holes of golf as long as I have power cart. I had some trouble in mid May and was on IV's for a month my lung function dropped to 23%, and just taking a shower was difficult. I am on the fence because I feel well enough to play golf sometimes but I know that I am one more infection away from having 23 % permanently, and will definitely have to be listed.

Dave 36 w/cf

beautifulsoul · Sep 19, 2011

I think that's fantastic that you can enjoying golfing sometimes and still feel somewhat healthy. However, in my opinion 23% is a pretty low number. It's low enough to be listed and for the time you have to wait for a donor. You could possibly get worse in that time frame. For me, I waited 2 years until they found the perfect match. I was as low as 19% before my double lung transplant. Luckily for me, I was able to stay stable around 20% for a of couple years. I'm not sure exactly what your brother went through but I'm sure seeing him go through the whole process would make your decision a bit more difficult. If you need any other advice, feel free to ask.

beautifulsoul · Sep 19, 2011

I think that's fantastic that you can enjoying golfing sometimes and still feel somewhat healthy. However, in my opinion 23% is a pretty low number. It's low enough to be listed and for the time you have to wait for a donor. You could possibly get worse in that time frame. For me, I waited 2 years until they found the perfect match. I was as low as 19% before my double lung transplant. Luckily for me, I was able to stay stable around 20% for a of couple years. I'm not sure exactly what your brother went through but I'm sure seeing him go through the whole process would make your decision a bit more difficult. If you need any other advice, feel free to ask.

beautifulsoul · Sep 19, 2011

I think that's fantastic that you can enjoying golfing sometimes and still feel somewhat healthy. However, in my opinion 23% is a pretty low number. It's low enough to be listed and for the time you have to wait for a donor. You could possibly get worse in that time frame. For me, I waited 2 years until they found the perfect match. I was as low as 19% before my double lung transplant. Luckily for me, I was able to stay stable around 20% for a of couple years. I'm not sure exactly what your brother went through but I'm sure seeing him go through the whole process would make your decision a bit more difficult. If you need any other advice, feel free to ask.

Daverog75 · Sep 22, 2011

Hello Amber,
 
Had an appointmnet with my doc at the transplant centre today. My breathing is still at 29% and my 6 minute walk was very good. Just based on the numbers she told me that I am early which I already knew that. So nothing has changed.
 
Dave,

Daverog75 · Sep 22, 2011

Hello Amber,

Had an appointmnetwith my doc at the transplant centre today. My breathing is still at 29% and my 6 minute walk was very good. Just based on the numbers she told me that I am early which I already knew that. So nothing has changed.

Dave,

Daverog75 · Sep 22, 2011

Hello Amber,

Had an appointmnetwith my doc at the transplant centre today. My breathing is still at 29% and my 6 minute walk was very good. Just based on the numbers she told me that I am early which I already knew that. So nothing has changed.

Dave,

beautifulsoul · Sep 22, 2011

I'm happy to hear that you are in stable condition <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're in my thoughts. Let us know of any changes. We're here to support each other.

Keep your head up & stay strong!

(((hugs)))

beautifulsoul · Sep 22, 2011

I'm happy to hear that you are in stable condition <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're in my thoughts. Let us know of any changes. We're here to support each other.

Keep your head up & stay strong!

(((hugs)))

beautifulsoul · Sep 22, 2011

I'm happy to hear that you are in stable condition <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're in my thoughts. Let us know of any changes. We're here to support each other.
 
 Keep your head up & stay strong!
 
 (((hugs)))

LReyome28 · Nov 14, 2011

I was recently in the hospital, and have been interested for years in getting on the list for a transplant. My Baystate Medical pulmonologist has continuously told me that I am "too healthy" (FEV 1 too high or something like that) to be considered for the list. However, during my recent hospitalization, the head pulmonologist at the rehab hospital I was at suggested to my mother the day I was discharged to inquire about getting me on the list anyway, because he feels that if I do not get on it, I may eventually be too sick to even be considered at all. In other words, he feels that Baystate pulmonologists in my CF clinic are "dragging their feet" in starting the process. Funny thing is, this head pulmonologist has worked at Baystate in the past.

LReyome28 · Nov 14, 2011

I was recently in the hospital, and have been interested for years in getting on the list for a transplant. My Baystate Medical pulmonologist has continuously told me that I am "too healthy" (FEV 1 too high or something like that) to be considered for the list. However, during my recent hospitalization, the head pulmonologist at the rehab hospital I was at suggested to my mother the day I was discharged to inquire about getting me on the list anyway, because he feels that if I do not get on it, I may eventually be too sick to even be considered at all. In other words, he feels that Baystate pulmonologists in my CF clinic are "dragging their feet" in starting the process. Funny thing is, this head pulmonologist has worked at Baystate in the past.

When to go on the transplant list

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