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how long did you wait?

K

katyf13

New member
I think I might have already asked this months ago, but I'm asking again. I know how long you wait is dependant on so many things and I can't go by anyone else's numbers, but I just want an average. How long did you or someone you know wait for lungs? How sick were you when you were listed? How sick were you when you were transplanted? Our biggest fear is that they will wait until he is too sick to move him up on the list....
 
I

IG

Guest
A lot of the responses you are going to get are from the old lung allocation listing.

They just changed the way the list worked in ... 04?
I was listed when I was 13 or so. I received the tx about 12 days after my 17th birthday (2003).
When I was listed my FEV1 was in the low 30's range and consistantly dropping.
When I was tx'ed I believe my FEV1 reached 21%, it might have been lower though.
Anywho that's me, and like I said they've changed the list since then.
 
E

EnergyGal

New member
My first transplant was in 1996 and I waited two months. My second transplant was in 2005 and I waited five months. My first call was a little under two months so it varies. I am also tall so that increases the odds of being called sooner. that is what my doctor told me and there was nobody in my height category when I was waiting so I was high on the list.

My FEV 1 was in the low twenties for the first transplant and the second probably in the high twenties.

There are so many other factors that go into weighing who is first on the list even if there are low FEV1's

I say do not stress because that is not going to help you. If you feel complete trust in your tx center you will be called and when their is a MATCH they will call you.

To increase chances of doing well post tx, forget about the CALL (trust me on this) they only usually call 95 percent chance in the nighttime. EXERCISE and eat as much as you can so you can be STRONGER going into the surgery.

They only transplant folks who really need it. If the call happens sooner than expected, take the chance.

the better the health going into the surgery the better he will do.

Talk to the Center with your concerns when you see them next time.

Transplantation has it risks but I feel that even if someone has setbacks they will do well and in time experience a nice quality of life like never before.

The quality of life that you receive after transplant cannot even compare to the quality of life with cf with a mild case. That was my experience.

My decision to transplant was I wanted the chance to live again and that I did. I did think if what if I died on the table during surgery my answer was I rather die on the table then suffer from CF.


Take care and Best Wishes for you both
Risa
 
E

EnergyGal

New member
forgot to mention that my first transplant was like a walk in the park compared to my second transplant compared to the hospitalization part. The first tx, I was out in ten days. My second transplant I was in for two and a half months to the day. Post operatively *out of the hospital*, I am doing much better second time around. I had a great quality of life the first time around and that is why I opted again to try the transplant once again.

Not easy but think positive and know that if there is any darkness that you will eventually shine on through. I cannot help but get mushy
Risa
 
A

AmyKins

New member
what do they consider "taller"? I am 5'6" and I consider that pretty tall considering most CFers are on the shorter side.
Im finally starting the process for evaluation on July 5. Remember I told you I had a weight problem? well since April I have gained 15 whole pounds (they would only transplant me if I weighted @ least 102 - now Im way over that) and I excercise everyday now because I want to show them that I am ready for this. so wish me luck on getting on the list..
 
A

anonymous

New member
Five six is tall. I am five eight. Congratulations on gaining weight. WOW Keep on impressing them as it is working.

I have this one doctor who is really associate to my doctor that I see. For the past two years every time he would see me he says "Eat Eat Eat" it is so funny with his thick accent. A month ago, I asked him to write Eat Eat Eat on a prescription for me and I keep it on my refridgerator. I have one from him and my own doctor. It helps to keep me munching out.

I wish you well and I am sure you will do GREAT
 
J

Joanne

New member
Katy,

Nothing wrong with asking again... someone new may learn some new information.

I waited for 30 months for my lungs. That was the old lung allocation system My FEV1 at listing was 28%. My FEV1 was 18% when I got my lungs.

I am not sure who you are talking about, but "he" she be getting re eavaluated every 6 months so that his LAS number is recalculated. That is how you move up on the list, the points they give you. And when you get sick, and a decrease occurs, they will change your score. If you feel he is sicker and no changes have been made, call the Tx Team and ask what should your next step be. Take that initiative, you will need it in this long process.

Joanne



I think I might have already asked this months ago, but I'm asking again. I know how long you wait is dependant on so many things and I can't go by anyone else's numbers, but I just want an average. How long did you or someone you know wait for lungs? How sick were you when you were listed? How sick were you when you were transplanted? Our biggest fear is that they will wait until he is too sick to move him up on the list....
 
F

fr3ak

Guest
I know none of this applies since I live in a different country but
I thought I would put my 2 cents worth in all the same<br>
<br>
I was listed 4 times before I finally got my tx<br>
<br>
first was when I was around 22, but I got kicked off the list due
to MRSA<br>
<br>
I ended up getting rid of the MRSA and went to get relisted, I
failed again because my liver was failing, which was later found to
be due to stones caused in the bile duct, had a ERCP and my
gallbladder removed, liver picked up<br>
<br>
3rd time I went to get listed I think it was my kidney's that were
playing up<br>
<br>
when I finally went to get listed I was undiagnosed with ovarian
cancer, I had dermoid cysts that had a high probability of being
cancerous, so hence I was turfed again, I fought them for over a
year while my health went down the drain, i ended up telling them
Id risk cancer because the simply fact was I was gunna die
anyway...<br>
<br>
when I finally went on the list, I was lucky enough to get my lungs
in 3 months, although the drs thought I would have had a 2+years
wait due to my size and blood group (I was O, so I could only
accept O)<br>
<br>
at the time of the surgery I had 3 months to live...(state of my
lungs etc)<br>
<br>
anyway thats the long and short of it, but as I said It doesnt
really apply since Im a Aussie <br>
<br>
 
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