Wanting a Transplant

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lites

New member
I was put on the transplant list2 and 1/2 yrs ago while I was still relatively healthy and working a fulltime job. My spcecialist told me it is better to get on the list early so they can always monitor me, and should I go downhill quickly at anytime for whatever reason - it will be all the better for me since:

a) The transplant team doctors and nurses will be familiar with me already.
b). They will have records of my health progress for the last x months/years.
c). I will have the time to mentally and physically prepare myself.
d). My family and friends will also have time to mentally prepare themselves, nothing is sudden and new to them.

Recently I have been a little worse for wear, have cut back my working hours to 4 days a week now, feel more tired and breathless these days, but all in all I can say: I think I agree with my doctor. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The earlier on the list, the better.
 
L

lites

New member
<br />I was put on the transplant list2 and 1/2 yrs ago while I was still relatively healthy and working a fulltime job. My spcecialist told me it is better to get on the list early so they can always monitor me, and should I go downhill quickly at anytime for whatever reason - it will be all the better for me since:
<br />
<br /> a) The transplant team doctors and nurses will be familiar with me already.
<br /> b). They will have records of my health progress for the last x months/years.
<br /> c). I will have the time to mentally and physically prepare myself.
<br /> d). My family and friends will also have time to mentally prepare themselves, nothing is sudden and new to them.
<br />
<br />Recently I have been a little worse for wear, have cut back my working hours to 4 days a week now, feel more tired and breathless these days, but all in all I can say: I think I agree with my doctor. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The earlier on the list, the better.
 
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Cojean62

New member
Sounds like a good idea. I might go ahead because my health has took a major nosedive here lately. I have stopped eating and breathing has gotten really hard lately.
 
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Cojean62

New member
Sounds like a good idea. I might go ahead because my health has took a major nosedive here lately. I have stopped eating and breathing has gotten really hard lately.
 
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Cojean62

New member
Sounds like a good idea. I might go ahead because my health has took a major nosedive here lately. I have stopped eating and breathing has gotten really hard lately.
 
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Ldude916

New member
Cojean- if you've stopped eating, maybe it's time to consider a g-tube? I had one placed in Sept 2010 and gained 20 lbs. I would never have been able to be added to the transplant list without gaining that weight....

It's really a huge burden off my shoulders to have to focus soooo much on eating during the day. Now I can focus more on treatments and resting while keeping my weight stable using overnight feedings. What a blessing!
 
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Ldude916

New member
Cojean- if you've stopped eating, maybe it's time to consider a g-tube? I had one placed in Sept 2010 and gained 20 lbs. I would never have been able to be added to the transplant list without gaining that weight....

It's really a huge burden off my shoulders to have to focus soooo much on eating during the day. Now I can focus more on treatments and resting while keeping my weight stable using overnight feedings. What a blessing!
 
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Ldude916

New member
Cojean- if you've stopped eating, maybe it's time to consider a g-tube? I had one placed in Sept 2010 and gained 20 lbs. I would never have been able to be added to the transplant list without gaining that weight....
<br />
<br />It's really a huge burden off my shoulders to have to focus soooo much on eating during the day. Now I can focus more on treatments and resting while keeping my weight stable using overnight feedings. What a blessing!
 
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Cojean62

New member
I already had a G-tube. Mom and I got annoyed so we pulled it out about a year ago. The doctor was screaming bloody murder when he found out. Kind of funny to watch....
 
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Cojean62

New member
I already had a G-tube. Mom and I got annoyed so we pulled it out about a year ago. The doctor was screaming bloody murder when he found out. Kind of funny to watch....
 
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Cojean62

New member
I already had a G-tube. Mom and I got annoyed so we pulled it out about a year ago. The doctor was screaming bloody murder when he found out. Kind of funny to watch....
 
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Brad

New member
Cojean62

Not sure where you are in your decision to have a TX, But I have many Friends who have had a Tx
and I have never heard even 1 of them say it was a mistake. They all said that they Never knew
a person could breathe so well....
The Best of Luck to You and Hope You live a Loge and Happy Life.
 
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Brad

New member
Cojean62

Not sure where you are in your decision to have a TX, But I have many Friends who have had a Tx
and I have never heard even 1 of them say it was a mistake. They all said that they Never knew
a person could breathe so well....
The Best of Luck to You and Hope You live a Loge and Happy Life.
 
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Brad

New member
<br /> Cojean62
<br />
<br /> Not sure where you are in your decision to have a TX, But I have many Friends who have had a Tx
<br />and I have never heard even 1 of them say it was a mistake. They all said that they Never knew
<br /> a person could breathe so well....
<br /> The Best of Luck to You and Hope You live a Loge and Happy Life.
 
A

augiee

New member
Basically you hear two or three different stories, I'm in that transition point of needing a transplant. You will hear the good stories were you get a new lease on life. But the ones that deal with rejection, surgery problems, and what not. You have to look at the grand law of averages, 50% don't live past 5 years after transplant. It's what you do to prolong your life past it's due date. I'm turning 30 this year, which honestly I never thought I would get to this point but I did. I thank god I got here, it's about what has changed in care for Cf in the 30 years that's amazing. When I was born life expectaince was around 13, now if you were born now you have a good chance of living to old age. But it's a huge step making sure your due card is not with the devil, and it's between you, god, and your support team(parents, dr, husband/wifes, and friends) you basically have to come turns dying because fighting for every breath you take after a transplant is one step away from the reaper.
 
A

augiee

New member
Basically you hear two or three different stories, I'm in that transition point of needing a transplant. You will hear the good stories were you get a new lease on life. But the ones that deal with rejection, surgery problems, and what not. You have to look at the grand law of averages, 50% don't live past 5 years after transplant. It's what you do to prolong your life past it's due date. I'm turning 30 this year, which honestly I never thought I would get to this point but I did. I thank god I got here, it's about what has changed in care for Cf in the 30 years that's amazing. When I was born life expectaince was around 13, now if you were born now you have a good chance of living to old age. But it's a huge step making sure your due card is not with the devil, and it's between you, god, and your support team(parents, dr, husband/wifes, and friends) you basically have to come turns dying because fighting for every breath you take after a transplant is one step away from the reaper.
 
A

augiee

New member
Basically you hear two or three different stories, I'm in that transition point of needing a transplant. You will hear the good stories were you get a new lease on life. But the ones that deal with rejection, surgery problems, and what not. You have to look at the grand law of averages, 50% don't live past 5 years after transplant. It's what you do to prolong your life past it's due date. I'm turning 30 this year, which honestly I never thought I would get to this point but I did. I thank god I got here, it's about what has changed in care for Cf in the 30 years that's amazing. When I was born life expectaince was around 13, now if you were born now you have a good chance of living to old age. But it's a huge step making sure your due card is not with the devil, and it's between you, god, and your support team(parents, dr, husband/wifes, and friends) you basically have to come turns dying because fighting for every breath you take after a transplant is one step away from the reaper.
 
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