for those who have yet to decide on transplant

G

Georgiagirl

New member
Hello Friends,<br>I am just curious to know what has been the deciding factor for those that have decided to not take the transplant route vs. those that have?  For me personally, I have had too many friends either not make it through while they were waiting for new lungs or once they received their new lungs, they had complication after complication and were not able to truly have a chance to "live with their new lungs".  I am leaning more on the side of not ever considering it and was wondering what others have experienced and/or the situations that they have come to a final decision to go forward with a transplant or not. <br>
 
G

Georgiagirl

New member
Hello Friends,<br>I am just curious to know what has been the deciding factor for those that have decided to not take the transplant route vs. those that have? For me personally, I have had too many friends either not make it through while they were waiting for new lungs or once they received their new lungs, they had complication after complication and were not able to truly have a chance to "live with their new lungs". I am leaning more on the side of not ever considering it and was wondering what others have experienced and/or the situations that they have come to a final decision to go forward with a transplant or not. <br>
 
G

Georgiagirl

New member
Hello Friends,<br>I am just curious to know what has been the deciding factor for those that have decided to not take the transplant route vs. those that have? For me personally, I have had too many friends either not make it through while they were waiting for new lungs or once they received their new lungs, they had complication after complication and were not able to truly have a chance to "live with their new lungs". I am leaning more on the side of not ever considering it and was wondering what others have experienced and/or the situations that they have come to a final decision to go forward with a transplant or not. <br>
 
L

Ldude916

New member
Hello!
I am currently listed, but I remember when I was healthy always saying I would NEVER consider a transplant....but here I am. The deciding factor is I want to do ANYTHING to live. I have such a wonderful husband and life that I want to do anything I can to stay here as long as possible! I don't want to leave my husband and not let him know I did everything in my power to be here with him....but that realization didn't come until I became really sick and actually had to make the decision.

What also helped is talking to several people who have had successful transplants (even 20 yrs out!), joining transplant forums for more information, and even talking to patients in rejection that say they would do it all over again if given the choice. I have never talked to any patient who has regretted going the transplant route, even though there were complications. Just the fact that they could breathe seemed to trump any length restrictions. They have said you're trading one set of problems for another - but it's a better set because you can BREATHE! I want to run with my doggies again - even if for a day - my quality of life HAS to be better if I can breathe, even if there are some more meds and hospital stays and eventually rejection. I will never take life for granted!

Third, I had a lobectomy in 2009, so I kind of feel like I know what a thorasic surgery will entail (i.e. all the chest tubes, scar, coughing after) - even though transplant is more involved than a lobectomy, I have to feel some reassurance that some of the experiences will be the same - so knowing what to expect eases my fears a bit.

Lastly, I read a lot of books about CF patients and transplant. Two stick out it my mind - Sick Girl Speaks! by Tiffany Christensen and The Power of Two: A Twin Triumph Over Cystic Fibrosis by Ana and Isa Stanzel.
 
L

Ldude916

New member
Hello!
I am currently listed, but I remember when I was healthy always saying I would NEVER consider a transplant....but here I am. The deciding factor is I want to do ANYTHING to live. I have such a wonderful husband and life that I want to do anything I can to stay here as long as possible! I don't want to leave my husband and not let him know I did everything in my power to be here with him....but that realization didn't come until I became really sick and actually had to make the decision.

What also helped is talking to several people who have had successful transplants (even 20 yrs out!), joining transplant forums for more information, and even talking to patients in rejection that say they would do it all over again if given the choice. I have never talked to any patient who has regretted going the transplant route, even though there were complications. Just the fact that they could breathe seemed to trump any length restrictions. They have said you're trading one set of problems for another - but it's a better set because you can BREATHE! I want to run with my doggies again - even if for a day - my quality of life HAS to be better if I can breathe, even if there are some more meds and hospital stays and eventually rejection. I will never take life for granted!

Third, I had a lobectomy in 2009, so I kind of feel like I know what a thorasic surgery will entail (i.e. all the chest tubes, scar, coughing after) - even though transplant is more involved than a lobectomy, I have to feel some reassurance that some of the experiences will be the same - so knowing what to expect eases my fears a bit.

Lastly, I read a lot of books about CF patients and transplant. Two stick out it my mind - Sick Girl Speaks! by Tiffany Christensen and The Power of Two: A Twin Triumph Over Cystic Fibrosis by Ana and Isa Stanzel.
 
L

Ldude916

New member
Hello!
<br />I am currently listed, but I remember when I was healthy always saying I would NEVER consider a transplant....but here I am. The deciding factor is I want to do ANYTHING to live. I have such a wonderful husband and life that I want to do anything I can to stay here as long as possible! I don't want to leave my husband and not let him know I did everything in my power to be here with him....but that realization didn't come until I became really sick and actually had to make the decision.
<br />
<br />What also helped is talking to several people who have had successful transplants (even 20 yrs out!), joining transplant forums for more information, and even talking to patients in rejection that say they would do it all over again if given the choice. I have never talked to any patient who has regretted going the transplant route, even though there were complications. Just the fact that they could breathe seemed to trump any length restrictions. They have said you're trading one set of problems for another - but it's a better set because you can BREATHE! I want to run with my doggies again - even if for a day - my quality of life HAS to be better if I can breathe, even if there are some more meds and hospital stays and eventually rejection. I will never take life for granted!
<br />
<br />Third, I had a lobectomy in 2009, so I kind of feel like I know what a thorasic surgery will entail (i.e. all the chest tubes, scar, coughing after) - even though transplant is more involved than a lobectomy, I have to feel some reassurance that some of the experiences will be the same - so knowing what to expect eases my fears a bit.
<br />
<br />Lastly, I read a lot of books about CF patients and transplant. Two stick out it my mind - Sick Girl Speaks! by Tiffany Christensen and The Power of Two: A Twin Triumph Over Cystic Fibrosis by Ana and Isa Stanzel.
 
G

Georgiagirl

New member
I appreciate you sharing your experience so far and what brought you to your final decision.  I do feel the same way in that I want to do all I can to be here to share life with my husband and family/friends.  I know the decision is not an easy one to make and I suppose posting it here reflects that with 90 persons reading the post and only one reply.  I shall look into both of the books that you had mentioned, I am familiar with the twins, however, I had not heard of the other author.  May you receive that new gift soon and find yourself taking strides on the walking trail with your pups.  Thank you again, the Lord bless you and keep you, dear one!<br>
 
G

Georgiagirl

New member
I appreciate you sharing your experience so far and what brought you to your final decision. I do feel the same way in that I want to do all I can to be here to share life with my husband and family/friends. I know the decision is not an easy one to make and I suppose posting it here reflects that with 90 persons reading the post and only one reply. I shall look into both of the books that you had mentioned, I am familiar with the twins, however, I had not heard of the other author. May you receive that new gift soon and find yourself taking strides on the walking trail with your pups. Thank you again, the Lord bless you and keep you, dear one!<br>
 
G

Georgiagirl

New member
I appreciate you sharing your experience so far and what brought you to your final decision. I do feel the same way in that I want to do all I can to be here to share life with my husband and family/friends. I know the decision is not an easy one to make and I suppose posting it here reflects that with 90 persons reading the post and only one reply. I shall look into both of the books that you had mentioned, I am familiar with the twins, however, I had not heard of the other author. May you receive that new gift soon and find yourself taking strides on the walking trail with your pups. Thank you again, the Lord bless you and keep you, dear one!<br>
 
A

azdesertrat

New member
There was never a question for me.
When my pulmonologist approached me with the idea of transplant I said 'YES' immediately.
As has been said previously- it comes down to a very simple question. do you want to live?
I did.
While my transplant didn't go exactly as planned I don't regret a thing. My only regret is the fact that I was unable to return to work due to diabetes.
The diabetes may have been from the anti-rejection drugs or it may have been caused by having cystic fibrosis, I don't know.
If you have the resources I would strongly advise you to proceed with transplant.
I have yet to regret it & am grateful for every additional day I've been blessed with.
Best of luck to you.
 
A

azdesertrat

New member
There was never a question for me.
When my pulmonologist approached me with the idea of transplant I said 'YES' immediately.
As has been said previously- it comes down to a very simple question. do you want to live?
I did.
While my transplant didn't go exactly as planned I don't regret a thing. My only regret is the fact that I was unable to return to work due to diabetes.
The diabetes may have been from the anti-rejection drugs or it may have been caused by having cystic fibrosis, I don't know.
If you have the resources I would strongly advise you to proceed with transplant.
I have yet to regret it & am grateful for every additional day I've been blessed with.
Best of luck to you.
 
A

azdesertrat

New member
There was never a question for me.
<br />When my pulmonologist approached me with the idea of transplant I said 'YES' immediately.
<br />As has been said previously- it comes down to a very simple question. do you want to live?
<br />I did.
<br />While my transplant didn't go exactly as planned I don't regret a thing. My only regret is the fact that I was unable to return to work due to diabetes.
<br />The diabetes may have been from the anti-rejection drugs or it may have been caused by having cystic fibrosis, I don't know.
<br />If you have the resources I would strongly advise you to proceed with transplant.
<br />I have yet to regret it & am grateful for every additional day I've been blessed with.
<br />Best of luck to you.
 
T

Treble

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>azdesertrat</b></i>  As has been said previously- it comes down to a very simple question. do you want to live?</end quote></div>

<div><br></div><div>This.</div><div><br></div><div>I mean there's nothing wrong with trying to get the most outta your original lungs, like Jerry does and all.. but if you need it then you need it. </div><div><br></div><div>You're pretty much committing suicide if you say no to it.</div>
 
T

Treble

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>azdesertrat</b></i> As has been said previously- it comes down to a very simple question. do you want to live?</end quote>

<br>This.<br>I mean there's nothing wrong with trying to get the most outta your original lungs, like Jerry does and all.. but if you need it then you need it.<br>You're pretty much committing suicide if you say no to it.
 
T

Treble

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>azdesertrat</b></i> As has been said previously- it comes down to a very simple question. do you want to live?</end quote>

<br>This.<br>I mean there's nothing wrong with trying to get the most outta your original lungs, like Jerry does and all.. but if you need it then you need it.<br>You're pretty much committing suicide if you say no to it.
 
S

summer732

New member
Hey Georgiagirl,
I think this is a great question and always ends up with a vibrant discussion. I know you feel a lot of people didn't reply, but I will say most of the time I only come here and check the Transplant section. A question like this might have gotten more attention in that folder.

It's easy to say that you would not consider a transplant when you are still healthy enough to not need it. For me, I wasn't ready to die yet. Death was inevitable, I knew that it was right around the corner. But for me I figured I'm going to die either way...it would be better to me to die trying to live rather than to just not put my all into it.


By the time I needed my transplant, I was no longer healthy enough to go to school...I was on oxygen all the time...I couldn't breathe....didn't want to eat....weighed 78 pounds. My life was no longer mine and it wasn't the life that I had hoped I would had. But I also loved life and knew that I wanted to experience what those around me had in their life.

Seven years later, I'm still breathing strong...I'm a healthy weight...I ran a half marathon...I work full time...I live in the city....I have fallen in love....been a bridesmaid 8 times....traveled the world...etc. etc. etc. Not everyone's story is like mine. And yes, I have had post transplant complications with the most serious being a tumor in my esophagaus. I have diabetes which is hard to control and I'm at risk for developing certain cancers. But none of this will ever replace the wonderful memories that I was able to generate in the last 7 years because of my transplant.

Why not give it shot? You might actually be one that gets the wonderful gift of life!
 
S

summer732

New member
Hey Georgiagirl,
I think this is a great question and always ends up with a vibrant discussion. I know you feel a lot of people didn't reply, but I will say most of the time I only come here and check the Transplant section. A question like this might have gotten more attention in that folder.

It's easy to say that you would not consider a transplant when you are still healthy enough to not need it. For me, I wasn't ready to die yet. Death was inevitable, I knew that it was right around the corner. But for me I figured I'm going to die either way...it would be better to me to die trying to live rather than to just not put my all into it.


By the time I needed my transplant, I was no longer healthy enough to go to school...I was on oxygen all the time...I couldn't breathe....didn't want to eat....weighed 78 pounds. My life was no longer mine and it wasn't the life that I had hoped I would had. But I also loved life and knew that I wanted to experience what those around me had in their life.

Seven years later, I'm still breathing strong...I'm a healthy weight...I ran a half marathon...I work full time...I live in the city....I have fallen in love....been a bridesmaid 8 times....traveled the world...etc. etc. etc. Not everyone's story is like mine. And yes, I have had post transplant complications with the most serious being a tumor in my esophagaus. I have diabetes which is hard to control and I'm at risk for developing certain cancers. But none of this will ever replace the wonderful memories that I was able to generate in the last 7 years because of my transplant.

Why not give it shot? You might actually be one that gets the wonderful gift of life!
 
You must log in or register to reply here.
Top