To do or not to do

[luckycharm]

Hi all
I am struggling with the decision of transplant. I know that with my health declining rapidly (my fev1 is 31), I need to make a decision of whether or not to start the process. I have a 10 year old little boy and I am wondering, if put in my position, how do you decide to risk everything you know-for a chance to breath. I don't want the last time my son sees me to be on a vent with chest tubes, I'm afraid to risk the familiar for a few months. What if something goes wrong? Could my son handle it? There are so many questions and fears racing through my mind right now. HELP!!!!

 

[luckycharm]

Hi all
I am struggling with the decision of transplant. I know that with my health declining rapidly (my fev1 is 31), I need to make a decision of whether or not to start the process. I have a 10 year old little boy and I am wondering, if put in my position, how do you decide to risk everything you know-for a chance to breath. I don't want the last time my son sees me to be on a vent with chest tubes, I'm afraid to risk the familiar for a few months. What if something goes wrong? Could my son handle it? There are so many questions and fears racing through my mind right now. HELP!!!!

 

[luckycharm]

Hi all
<br />I am struggling with the decision of transplant. I know that with my health declining rapidly (my fev1 is 31), I need to make a decision of whether or not to start the process. I have a 10 year old little boy and I am wondering, if put in my position, how do you decide to risk everything you know-for a chance to breath. I don't want the last time my son sees me to be on a vent with chest tubes, I'm afraid to risk the familiar for a few months. What if something goes wrong? Could my son handle it? There are so many questions and fears racing through my mind right now. HELP!!!!

 

[Melissa75]

I am sorry you are going through this. I have a nine-year-old son and I can only imagine planning for a transplant as well as my family's continued daily lives.
I do not have advice for you, but if you do not get a response soon, you might consider re-posting in the Adults section because it gets the most traffic, or even the Pregnancy section because that is where moms with CF often hang out.
My gut tells me that your son will someday appreciate your fight with CF and the decisions you made no matter what you choose to do.
My personal feeling is that I would do almost anything to possibly gain more time in my children's lives, but I say that from a perspective of not having investigated fully how long and disruptive to everyone's lives the waiting and transplant process would be, as well as the possibility of it going badly, either immediately or over the longer term.
So, I hope you get more insightful responses. Mostly, I saw your post this morning and wanted to bump it for you.

 

[Melissa75]

I am sorry you are going through this. I have a nine-year-old son and I can only imagine planning for a transplant as well as my family's continued daily lives.
I do not have advice for you, but if you do not get a response soon, you might consider re-posting in the Adults section because it gets the most traffic, or even the Pregnancy section because that is where moms with CF often hang out.
My gut tells me that your son will someday appreciate your fight with CF and the decisions you made no matter what you choose to do.
My personal feeling is that I would do almost anything to possibly gain more time in my children's lives, but I say that from a perspective of not having investigated fully how long and disruptive to everyone's lives the waiting and transplant process would be, as well as the possibility of it going badly, either immediately or over the longer term.
So, I hope you get more insightful responses. Mostly, I saw your post this morning and wanted to bump it for you.

 

[Melissa75]

I am sorry you are going through this. I have a nine-year-old son and I can only imagine planning for a transplant as well as my family's continued daily lives.
<br />I do not have advice for you, but if you do not get a response soon, you might consider re-posting in the Adults section because it gets the most traffic, or even the Pregnancy section because that is where moms with CF often hang out.
<br />My gut tells me that your son will someday appreciate your fight with CF and the decisions you made no matter what you choose to do.
<br />My personal feeling is that I would do almost anything to possibly gain more time in my children's lives, but I say that from a perspective of not having investigated fully how long and disruptive to everyone's lives the waiting and transplant process would be, as well as the possibility of it going badly, either immediately or over the longer term.
<br />So, I hope you get more insightful responses. Mostly, I saw your post this morning and wanted to bump it for you.

 

[Printer]

If the decision was mine, I would make it on a statistical basis. What is the expectiency of someone your age and sex coming through this surgery. Against what is your life expediency if you don't have the operation.

Maybe I am just uninformed but I only hear of sucessful operations.

Whatever you chose, my prayers are with you.

Bill

 

[Printer]

If the decision was mine, I would make it on a statistical basis. What is the expectiency of someone your age and sex coming through this surgery. Against what is your life expediency if you don't have the operation.

Maybe I am just uninformed but I only hear of sucessful operations.

Whatever you chose, my prayers are with you.

Bill

 

[Printer]

If the decision was mine, I would make it on a statistical basis. What is the expectiency of someone your age and sex coming through this surgery. Against what is your life expediency if you don't have the operation.
<br />
<br />Maybe I am just uninformed but I only hear of sucessful operations.
<br />
<br />Whatever you chose, my prayers are with you.
<br />
<br />Bill

 

[markinohio]

My wife and I have been struggling with these same questions since my doctors first mentioned transplant over a year ago. I went through the eval process and they say I'm not "sick enough" yet. We have two boys ages 8 and 11. The boys know I am sick and will need a lung transplant. I don't think they know or understand how serious it is. I know I will eventually get to a point where I will need a transplant or I won't be around anymore. I think I personally would take the risk in order to be around for several more years, or longer.
Not sure if that helped you or not, but I think it's a tough decision for all of us.

 

[markinohio]

My wife and I have been struggling with these same questions since my doctors first mentioned transplant over a year ago. I went through the eval process and they say I'm not "sick enough" yet. We have two boys ages 8 and 11. The boys know I am sick and will need a lung transplant. I don't think they know or understand how serious it is. I know I will eventually get to a point where I will need a transplant or I won't be around anymore. I think I personally would take the risk in order to be around for several more years, or longer.
Not sure if that helped you or not, but I think it's a tough decision for all of us.

 

[markinohio]

My wife and I have been struggling with these same questions since my doctors first mentioned transplant over a year ago. I went through the eval process and they say I'm not "sick enough" yet. We have two boys ages 8 and 11. The boys know I am sick and will need a lung transplant. I don't think they know or understand how serious it is. I know I will eventually get to a point where I will need a transplant or I won't be around anymore. I think I personally would take the risk in order to be around for several more years, or longer.
<br />Not sure if that helped you or not, but I think it's a tough decision for all of us.

 

[Lex]

My advice....go thru the evaluation process and get listed. What can it hurt? If you get the call, you can always say no.

But at that time, as your health declines, you may want a TX. It's good to have the option. Doing nothing will leave you with no options.

I have a 2 year old son (1 when I had my TX)....I would have 1000 TX to enjoy this time with him. The docs told me I had only 3 weeks left to live.

 

[Lex]

My advice....go thru the evaluation process and get listed. What can it hurt? If you get the call, you can always say no.

But at that time, as your health declines, you may want a TX. It's good to have the option. Doing nothing will leave you with no options.

I have a 2 year old son (1 when I had my TX)....I would have 1000 TX to enjoy this time with him. The docs told me I had only 3 weeks left to live.

 

[Lex]

My advice....go thru the evaluation process and get listed. What can it hurt? If you get the call, you can always say no.
<br />
<br />But at that time, as your health declines, you may want a TX. It's good to have the option. Doing nothing will leave you with no options.
<br />
<br />I have a 2 year old son (1 when I had my TX)....I would have 1000 TX to enjoy this time with him. The docs told me I had only 3 weeks left to live.

 

[Daychele]

My daughter who just had had her transplant on 2-25 is doing wonderful. She experiencing the things she has not been able to do in years. The things that the rest of us take for granted or complain about. It was the best thing she could have done. And to watch her experience these things for the first time is amazing. But in order for you to have a great success YOU have to be determined to make it successful. Do what the doctors tell you. Get up and move afterwards even though it hurts. Her quality of life is so much better as well as her quantity.

Dana

 

[Daychele]

My daughter who just had had her transplant on 2-25 is doing wonderful. She experiencing the things she has not been able to do in years. The things that the rest of us take for granted or complain about. It was the best thing she could have done. And to watch her experience these things for the first time is amazing. But in order for you to have a great success YOU have to be determined to make it successful. Do what the doctors tell you. Get up and move afterwards even though it hurts. Her quality of life is so much better as well as her quantity.

Dana

 

[Daychele]

My daughter who just had had her transplant on 2-25 is doing wonderful. She experiencing the things she has not been able to do in years. The things that the rest of us take for granted or complain about. It was the best thing she could have done. And to watch her experience these things for the first time is amazing. But in order for you to have a great success YOU have to be determined to make it successful. Do what the doctors tell you. Get up and move afterwards even though it hurts. Her quality of life is so much better as well as her quantity.
<br />
<br />Dana

 

[Ldude916]

I am currently listed for transplant, but I do not have any children (just a hubby and doggies!), but making this decision is hard! My advice is to meet with the transplant team ASAP and find out what it's all about. Research forums, the internet, success stories, go to a support group meeting and get INFORMED!! Knowledge is your best defense to ward off fear and make a good decision for you!! Transplant programs have free social work/psychologists to work with you and your family.

I believe the statistics of patients that come through the surgery itself is very high (> 95%) so I think your fears of your son seeing you for the last time on a vent is HIGHLY unlikely. Once you get down to FEV of 25% or less, it will become apparent how hard life is when you cannot breathe and suddenly your life of familiarity will become unfamiliar and scary. When this happens, and the doctors tell you that you probably have a year or so left to live, something incredible happens - you welcome the chance for life and to breathe again - no matter what the risks are! To be able live and see your son blossom and participate in life is what you want to remember and what you want your son to experience. All I've ever heard from transplant patients (no matter what struggles they experience post-transplant) is that they'd do it 1000 times over again!

There are so many scary questions and so many what ifs - but I would recommend getting informed starting now and learning about the process and the tools available to help you and your family through this. Unfortunately, your son may eventually have to deal with loss, but YOU can do EVERYTHING in your power to NOT GIVE UP and show your son your dedication to life! So many transplant are successful for many, many years and people are participating in life! Unfortunately, lung transplant is currently the only way to extend the life of CF patients whose lungs are failing them, so while it's a hard decision, I believe once you become informed about it, the decision will become clear =) Best of luck to you!

 

[Ldude916]

I am currently listed for transplant, but I do not have any children (just a hubby and doggies!), but making this decision is hard! My advice is to meet with the transplant team ASAP and find out what it's all about. Research forums, the internet, success stories, go to a support group meeting and get INFORMED!! Knowledge is your best defense to ward off fear and make a good decision for you!! Transplant programs have free social work/psychologists to work with you and your family.

I believe the statistics of patients that come through the surgery itself is very high (> 95%) so I think your fears of your son seeing you for the last time on a vent is HIGHLY unlikely. Once you get down to FEV of 25% or less, it will become apparent how hard life is when you cannot breathe and suddenly your life of familiarity will become unfamiliar and scary. When this happens, and the doctors tell you that you probably have a year or so left to live, something incredible happens - you welcome the chance for life and to breathe again - no matter what the risks are! To be able live and see your son blossom and participate in life is what you want to remember and what you want your son to experience. All I've ever heard from transplant patients (no matter what struggles they experience post-transplant) is that they'd do it 1000 times over again!

There are so many scary questions and so many what ifs - but I would recommend getting informed starting now and learning about the process and the tools available to help you and your family through this. Unfortunately, your son may eventually have to deal with loss, but YOU can do EVERYTHING in your power to NOT GIVE UP and show your son your dedication to life! So many transplant are successful for many, many years and people are participating in life! Unfortunately, lung transplant is currently the only way to extend the life of CF patients whose lungs are failing them, so while it's a hard decision, I believe once you become informed about it, the decision will become clear =) Best of luck to you!