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INFO. ON LUNG TRANSPLANTS

anonymous

New member
it drives me crazy hearing all this about not having insurance to get operations nad such...it is really devistating especially knowing that once day my niece might need this...what is this world coming to we will help every other god d@mn country except the people in our own ....it is really sickining!!!!!!!!!
 

Joanne

New member
Yes, in the U.S. there are some people who cannot afford insurance.... that is the truth. I can barely do it.

There is also Medicare in the U.S. and many of the lung tx centers are have Medicare coverage for their tx.

As to Allan's situation, I am not completely sure about his particular situation, but it could be that he had other circumstances as well... when he got listed, his health to weak to take lungs, etc. So much to each person's story. Would he of gotten lungs in time in Canada? I don't know. I don't think any of us could know that. I have had friends in Canada die pre tx, because they were waiting so long.
In Canada, health care is not free.... a tx is not free.... the Canadians are paying dearly in other ways, through taxes. Nothing is free.... nothing.

Joanne Schum
luckylungsforjo@aol..com
 

thelizardqueen

New member
The waiting list for lungs in Canada is an average of two years, but in Toronto the waiting list is 9 months. So if time is not on your side, you have to relocate to Toronto is you live anywhere else.
 
I

IG

Guest
Allan had b. cepacia, which was a factor in the transplant. I believe since b. cepacia CFers have an added risk after tx, something to do with infection, the government didn't want to pay for it. He was in the process, I know, of lobbying this. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

Faust

New member
Question though, if the CF gene mutation that affects the chloride channel is on the basic genetic level in the entire body, how come the new lungs don't eventually take on the CF traits over time? I guess that is what i'm not seeing. I can fully see the lungs starting out "new", and not having the scaring and bacterial issues that come with CF, but I would think that since it is the bodies basic mutated DNA creating the problems in the chloride channel, that it would affect the new lungs over time anyway.
 

anonymous

New member
Nothing is free and Canada does refuse to TX some for medical reasons like with Allen in the US (cepacia, wt, health, antibodies etc.). Most that have drive have found a way to get a TX in the US, many with medicare. I have found that many CF's don't seem to have the drive to go through the process.

Your body has CF post TX and you have the sinus, sweat, digestive, reproductive, GERD, cancer, diabetes, etc issues. I know one CF post TX in deep trouble from an intestinal blockage fighting for his life. Post TX your lungs are CF free and still can have infection issues from the drugs (no immune system). In theory, over time some DNA from you may well coat the lung tissue making it less likely to be attacked by the body, therefore with some CF "traits". Yet to my knowledge, the rejection issues or an infection from the immunosuppresants are the issues post TX. The largest issues are rejection (BOS). I suppose if you live for 25 years post TX you may have a CF issue, who cares your having a TX because your dying now.

To explain a TX are beyond this site, talk with and read all the information out there. If you go to a center, have them try and get someone that has been through the adventure talk with you. I have done this with several CF's and am sure Joanne has talked to many. One of the best decisions I have made healthwise in my life. Take the chance, your options are limited.

CF 55 TX cepacia 6 years out
 

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Nothing is free and Canada does refuse to TX some for medical reasons like with Allen in the US (cepacia, wt, health, antibodies etc.). Most that have drive have found a way to get a TX in the US, many with medicare. I have found that many CF's don't seem to have the drive to go through the process.</end quote></div>

Just FYI, this is worded rather carelessly. It makes it sound like you're saying Allan didn't have the "drive to go through the process," which is, if you knew anything about him, crap.
 

Landy

New member
I interpreted her comment as that Allan was denied because of health reasons that could make tx tricky but 'many' other folks get denied and don't have the stamina or the drive or something? to not take no for an answer.
And Emily couldn't be more right, Allan was a fighter for himself and what he felt was the right, humane thing to do--there's no denying that! Just too bad he didn't have more time to fight through the red tape....
 

Claire17

New member
In response to Sean's question: The cftr protein is a cellular protein, meaning that each single cell produces its own cftr protein, and never gets it from other cells. Donor lung cells have their own DNA that produce their own cftr. Hence the lungs are normal and don't get CF. There's no sharing of the cftr gene or protein between the new lung cells and the rest of your body. Does that make sense or answer your question at all?
 

Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Claire17</b></i>

In response to Sean's question: The cftr protein is a cellular protein, meaning that each single cell produces its own cftr protein, and never gets it from other cells. Donor lung cells have their own DNA that produce their own cftr. Hence the lungs are normal and don't get CF. There's no sharing of the cftr gene or protein between the new lung cells and the rest of your body. Does that make sense or answer your question at all?</end quote></div>



Yeah pretty much, thanks a ton. Another question though. Given our current medical/technological advancements, what is the current lifespan post lung transplant? And thanks a ton for your answer. I was probably ignorant enough to think what the bodies DNA is made up of makes for the entire rest of the body. It's cool that isn't the case. But i'd still like the know the rest of my question. Thanks a ton.
 

Joanne

New member
A couple comments.

To 55 yr post lung tx, Cepacia..... you said "Post TX your lungs are CF free and still can have infection issues from the drugs (no immune system). " Post tx we do have an immune system... our immune systems are suppressed, not abolished. That is where a lot of fear comes in, that you will have no immune system and will catch everything you come anywhere near.

Sean Davis you said "Yeah pretty much, thanks a ton. Another question though. Given our current medical/technological advancements, what is the current lifespan post lung transplant? And thanks a ton for your answer. I was probably ignorant enough to think what the bodies DNA is made up of makes for the entire rest of the body. It's cool that isn't the case. But i'd still like the know the rest of my question. Thanks a ton. "

Well currently lung tx is just about 20 years old. So the person living the longest can only be that far out... I know a man who is 19 years post. I think he could be the longest survivor as of now. Where will it go into the future???? Who knows. Since my tx in 1997 things have changed so much, for the better, and new drugs, and new therapies, and new surgery techniques, and it means promise for the future.

The way the new lung allocation system is, less people are dying on the list. And there are some new ventors in the works for getting more donors - Non Heart Beating Donors, that might reduce the list way down.... such hope and I love it.

Joanne Schum
luckylungsforjo@aol.com
 

Claire17

New member
Sean--about lifespan post-transplant. There is no inherent limit in how long we can live after transplant, like Joanne says. There are some statistics on survival, but comprehensive data is hard to find. What I've found recently. For all lung diseases, the odds of surviving 5 years post-transplant is around 45-50%. BUT for CF patients, some studies have shown the odds to be around 65-70% for 5 years. Perhaps because we're younger, perhaps because we know how to take care of ourselves? It's still not known.

So when people get to the end of their rope, CF lung-wise, it is a really good gamble, in my opinion. Because in addition to the odds of living longer, you get to feel better than the last couple years when your CF lungs just sucked. For me-no nebs, vests, or anything--just feelin' groovy.

A little more about post-transplant medical stuff, if you're interested. Mainly, it's about balancing lots of competing factors and getting lucky. Immunosuppression is necessary to prevent acute and chronic rejection of the new lungs. But immunosuppression is tricky for several reasons. First, the immuno drugs have strong side effects--we all know prednisone sucks; other immuno's can hurt your kidneys or cause other problems. Over time, other organs in your body will feel the effects.

Second, by suppressing the immune system, we become vulnerable to other infections, both familiar and strange. For example, I still have pseudo in my sinuses, and sometimes it infects my lungs and I need antibiotics just like before (but now they actually clear the crap from my lungs!). I've also had a weird fungal infection in the lungs, too, and I'm sure if you talk to other transplantees they will tell you some interesting infectious stories.

Third, immunosuppression is not an exact science. Not everything works the same for every person. And each transplant center has variations on which drugs and how much of them to use. This is not because doctors are idiots (in this case), but because it is hard to standardize dosing and do good randomized studies, when there are so few people with such different issues, and nobody, including myself, would want to mess with their own delicately balanced drug levels for a study. Not to say these studies will never happen, just that it is going to take a while, and they won't be crystal clear.

Last, there really is a certain amount of luck involved. No one can predict who will get acute rejection, who will get chronic rejection, who will have kidney damage, or who will end up with which new and wonderful bugs. Most of us get a combination of these, and just deal with them as they come.
 

brocksbabies

New member
hi mandi my name is earl i am 40 i have cf i received a double lung transplant in april 1997 and it was one of the best thing the lord could give me and in july of 2002 i received a kindey transplant and my life is 10x better the doctors that done my transplants where in tennessee at vanderbilt they are one of the best just believe in the lord and just have faith. i hope you get well
 
M

MANDI

Guest
<img src="i/expressions/face-icon-small-smile.gif" border="0">THANKS SO MUCH EARL! JUST TO HEAR YOU SAYING TO TRUST IN THE LORD REALLY HELPED ME. NO-ONE ELSE EVER SEEMS TO MENTION ANY RELIGION HERE AND I DO UNDERSTAND THE CONTROVERSY IN THAT.
EVERYONE WHO COMMENTED AND REPLIED TO MY QUESTION, YOU REALLY HAVE HELPED ME IN MY DECISION- I AM GOING TO FOLLOW THROUGH AND TRY TO GET ON THE LIST!!!!!!!!!!!! I TRULY DID NOT REALIZE THAT THE NEW LUNGS WOULD NOT "CATCH" THE CF AND I AM AMAZED!!!!!!!!!!!!!!
ONCE AGAIN , THANK YOU ALL!! (FYI: I WOULD BE HAVING MY TX AT THE UNIVERSITY OF NORTH CAROLINA @CHAPEL HILL). I LIVE IN WESTERN N.C.
 

Joanne

New member
Mandi,

I had my lung tx at UNC, Sept 12, 1997...I highly recommend UNC... great team and great with CF.

Joanne Schum
 
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