Lung Transplant and how long you live after you have one

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RoxyChick2381

New member
I was wondering if this is true or not. I heard that people that have a lung transplant only have 5 years to live after that. So that really concerned me . I myself haven't had to get a lung transplant yet . But if i get so sick i need one .I was thinking about getting one. Well now sense i heard that i don't know.<img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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anonymous

New member
Kelly, that is correct, but there is more information that you should know.

The 5 year life expectancy includes everyone who has a transplant, regardless of diagnosis. What they do not tell you is that people with CF are used to taking medication on a regular basis and on a timely schedule. It's all about keeping up with your meds.

Patients with CF tend to live up to 10-15 years because of their experience with the regimine. There are a couple of patients in the UK that have lived 25 years and are still going strong.

I was under the same suspicion myself when I heard 5 years, then I found out that most transplant patients are not used to taking medications on a regular basis for long periods of time. You MUST take your anti-rejection medication every day at the same time. From what I have found out, you are allowed 10 minutes, but no more.

If your schedule is 7am and 7pm, don't take it a 6am, wait until 7, and don't wait until 7:30 either. Compliance is the biggest factor in organ rejection.

I hope this helps

Dan 36 w/CF http://lungfordan.blogspot.com
 
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anonymous

New member
Dan,
Thanks for responding to what i posted. That is really sad and scaries me . I always thought once you got a lung transplant you would have a longer life to live . This just really brakes my heart and makes me really depressed<img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/brokenheart.gif" border="0">.Do you have cf and have you had a lung transplant?
 
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anonymous

New member
this question is for dan.. i dont want to take away from this post.. but im trying to access your link and i cant... can ya help....<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
Kelly, Dan's info. is not correct.

On clinic days my daily time to take the rejection meds is freqently missed by hours at times. I have been told that the body takes around 4 hours after you miss a dose to begin the rejection process.

CF's because of infection's on board can have a tough time. As I have said, you do not wake up with a warranty card sticking out of your chest. I have seen and known CF's to not make it out of the hospital, and die within years. Get the CF Roundtable publication and read some of the TX stories and get a better idea of the process.

I have lived almost 5 years and every day has made the gamble worth the experience. I am very pro. TX and would even consider having another one knowing the process.

There is no data to support that CF's live 10-15 years post TX at this time. England was not, nor was anyone doing double lung TX's 25 years ago.

Some CF's are around 15 years out. Joanne on this site wrote a book and tracks this information and hopefully will respond to this post.

The largest risk for rejection is not know or fully understood. Exercise may also play a role in long term survival. Many studies are ongoing.

I do not mean to scare you, I know many doing well. But talk and read articles from CF's that are living with TX's. Bottom line, after TX you have two fatal diseases, CF and TX.

If you are dying of CF, I would definately have a TX, but thats my choice. Why not try and get in the record books for years lived post TX and new meds and ideas are constantly improving the life of post TX patients.

CF 54 TX cepacia
 
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anonymous

New member
For your information:

First lung TX was in 1963 in the south. (not successful)
1981 Stanford has first successful heart/lung transplant
1983 first successful single lung TX in Canada
1986 first successful double lung TX in Canada.

Serveral 25 year post TX living in England, I do not think so!

I am convinced that there are some CF's out there looking to set records for survival post TX. The almost 5 years I have had have been wonderful and worth the effort. What an adventure.


CF 54 TX cepacia
 
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anonymous

New member
I don't know which survival rate stats are correct. However, during a recent conversation with a lung transplant doctor, she told me that in her experience she has had much greater success with CF patients due to their long-term experience with medical care and their tendency to be more compliant.
 
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RadChevy

New member
Hi Kelly,

Lung tx is a choice... a choice between life and death.

When your doctors approach you about lung tx, they are pretty much saying you are in the end stage of the illness ( I don't like the words end stage, but have not devised better words for it) and that your life expectancy is not that long... maybe a short 2 years. So when offered the opportunity for lung tx, which may give you less or more than the 5 years life expectancy that centers use, you have to take into account, you may be one of the people who lives 5, 6, 7, 8 or more years. But the best part is HEALTHY, PRODUCTIVE years!!!

I am 7 years post lung tx, and my sister is 4 years post.

With time and since I had my tx, they have new meds, new therapies, that help extend our lives even more, and those drugs and therapies and surgery will only improve over time. So for those who need a lung tx in the future, the stats will get better.

So do CFers do better than other lung illnesses after tx? Yes they do. I read a UNOS document I think recently that showed that at the 5 year mark, the CFers were outliving the other recipients of lungs, and actually it began at the 3 year mark. Also, with the new lung allocation comping up, transplant professionals took into account " benefit of transplant'. The new system "gives points" and the benefit of tx gives CFers more points than some of the other lung recipients... so stats show they do better.

Why do CFers do better? As mentioned in the other emails, we are well trained in the importance of taking meds, and know the results if we don't. We are younger than many other recipetns of lungs. We are compliant, again, most likely due to taking care of ourselves for many years. We also are more active than other lung illnesses, due to age and determination and the fact that some of us were not able to exercies like we wished for years, and now making up for time.

Also, when a CFer does not need lungs as of now... it is hard to imagine saying yes to it... but when you start to decline and realize life is not getting better, you most often say yes to tx.

I did write a book on lung tx and shared stories of success. CFers are doing everything post tx, teachers, becoming moms(adoption), pilots, owning restarurants, travel , exercise etc.

Do you have any certain fears or concerns about lung tx that maybe some of us can help answer?

Yes, lung tx has only been around since 1987 and I have a friend who had his lung tx in 1987... his story is in the book as well!!!

Joanne Schum
luckylungsforjo@aol.com
 
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anonymous

New member
Joanne

Pilots post lung TX? I have talked to the FAA and they told me two years ago that no lung TX has ever been given a medical to fly post lung TX. I talked to the head physician at Hdq. and he told me to forget getting a medical for a private pilots lisc. much less a commercial ticket. The cost and approval would be years and require a huge expendature of time and numerous experts, still with limitations. AOPA also knew of no pilots flying with a US medical. Now sailplanes are another issue but powered flight with a US ticket?

If you have the info. please give me an e-mail. Thanks for the other info.!

I have seen some very old "black lung" guys with one lung TX doing very well 13-14 years out and in their 70's.

CF 54 TX cepacia
 
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RadChevy

New member
Yes, a pilot...SHE flys small planes I believe. She had her living lobar lung tx in 1996 at UNC... .she actually has her story in Taking Flight....


Having connections with so many people around the U.S. and the world..... I tend to encounter information I thought not possible.

Joanne
 
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anonymous

New member
This post is for the man who is 54 post tx and had b. cepacia. I've read your posts over the last few months and have been working up the nerve to ask you a few questions. My husband is 45, has b. cepacia Type III and is listed in Indianapolis for lung tx. I don't have to list our concerns and issues, because you know them first hand more than anyone. Do you work full time now? How long were you 'down' after your tx (I know it varies from patient to patient, just curious with you.) How many times did you have therapy each week, and for how long? I've read Joann talk about some special procedure Dr. Egan uses to clean out the chest cavity, or something. Are you aware if they did that to you? Although we don't talk to the surgeons, our tx team said the weren't aware of that, but they'd ask the surgeon. They have done one CF'er with b. cepacia (he's about 20 I think), and he's doing okay. My husband has b. cepacia, pseudonomas and stenotrophomonas (sorry for the spelling). He has been having to do two home IV antibiotics for three weeks about every two months. He still works full time (he's such a go getter, and until a couple of years ago (when he got cepacia) he was so active -- so he doesn't work the many hours he used to.) He gets so frustrated with being tied down to oxygen (4 liters) and not having the energy and breath to do things.

Our tx team has told us (though they don't know, of course) that they expect him to shoot close to the top of the list April 1st when the new rules go into effect. It's surreal for us -- wanting him to feel better, but being scared of the surgery and post surgery.

Thanks for listening. I am so glad you are doing so well. Best wishes to you. We have each other and a very strong faith -- I don't know how we'd make it without that. I just wanted to let you know how much your story encouages me.

Jan
 
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anonymous

New member
Five years is an average survival rate. That includes people who only make it a few days to people who make it many more years after. I'm post transplant almost 8 years and doing fine. I'm followed at Duke University Medical Center in Durham, NC and they have several patients beyond 10 years.

Even if it were only five years, by the time you are ready for transplant you may not have more than one year left, so five seems like a lot. My CF doctor put it this way: you are trading one set of problems for another set of problems, but you feel much better. I've talked with lots of transplant patients and not one of them has ever expressed regret for getting transplanted.

When the time comes for anyone to be transplanted, I strongly suggest you get the names and phone numbers of other CF transplants from your doctor. They can be a big help with answering questions and letting you know what to expect.

If anyone wants to email me, my name is Lori and my email is: justintime4.1@juno.com
 
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anonymous

New member
Jan:

I will respond to all your questions if I can get in touch with you via e-mail. Some of the information you request I would rather not put out on an open forum. How may TX's does your center perform in a year and do they have success or have they tried to TX cepacia?

CF 54 TX cepacia
 
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anonymous

New member
Debbie:

Yes you can fly commercial post TX. I fly accross the country to my TX center for my clinic visits from the west. I likely caught a cold from one flight and was not pleased (first year post TX). I take many precautions as do other TX's. Some have flown to Europe. I have flow to Oz. post TX which is a very long (14 hour) flight, without any issues.

CF 54 TX cepacia
 
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shamrock

New member
Can someone write what the new rules are here. I saw them somewhere else but cant remember what they are or where they were. Im talkin about the transplant rules as of April 1st.<img src="i/expressions/rose.gif" border="0">
 
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