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Thread: Lung Transplant and how long you live after you have one

  1. #1

    Lung Transplant and how long you live after you have one

    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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  2. #2

    RE:Lung Transplant and how long you live after you have one

    Posts like this depress me.

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  3. #3

    RE:Lung Transplant and how long you live after you have one

    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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  4. #4

    RE:Lung Transplant and how long you live after you have one

    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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  5. #5

    RE:Lung Transplant and how long you live after you have one

    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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  6. #6

    RE:Lung Transplant and how long you live after you have one

    yes Dan i am having the same problem with your link!

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  7. #7

    RE:Lung Transplant and how long you live after you have one

    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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  8. #8

    RE:Lung Transplant and how long you live after you have one

    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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  9. #9

    RE:Lung Transplant and how long you live after you have one

    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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  10. #10

    RE:Lung Transplant and how long you live after you have one

    Yeah defenately not 25 years because that doesnt add up!

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