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Thread: survival rate of double lung transplants

  1. #1

    survival rate of double lung transplants

    so ive been thinking of the future, im seventeen and starting to worry about lung transplant that i will have to have. my mom says in order to live a long life like everyone else, i will have to have a double lung transplant. i saw a statistic saying after surgery 80% come out alive. then after 5 years 50% live. that freaks me out. In about 20 years, will CF be cured? In about 20 years what will the statistics look like? i will be 40 almost by then, and guessing i will need one by then. By the time that is which is 20 years or so, will everyone survive the surgery itself and will almost every live a normal lifespan? im very worried.

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  2. #2
    I'm 32 and nowhere near needing a transplant, so don't freak out! Try to stay as healthy as you can, exercise, do your meds... Chances are that within a few years, we'll have medication to fix all mutations!

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    33 years old, Swedish/Spanish, international traveler, now living in Sweden. I have 3 business activities! Here's my CF story: I have DF508, port, cataract operation.

  3. #3
    You shouldn't be freaking out right now. I saw your other post in the adult section. I replied to that one as well. Your health is very good at the moment. Many Many people today survive the surgery itself. The first year is the most risky when it comes to rejection and infection which are the most common issues after a double lung transplant. The average survival rate after the first year is 7 years. There are people today that are still living 10-15+ years after their transplants.

    Stay focused on the present. Do everything you want to do while you still can. Don't worry about the far future. You can't enjoy today if you're busy freaking out about 20 years from now.

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    AMBER 24yrs CF (DDf508) Married w/ CFRD Double Lung TX 3-13-07 Kidney TX 7-2-07 G-Tube &
    Cochlear Implants

    Learn from Yesterday, Live for Today, Hope for Tomorrow - Albert Einstein

  4. #4
    (im kinda dumb when it comes to cf, i always ask my mom) but when you say mutations, you mean cf? like theyll be a cure to cure the cf completely?!

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  5. #5
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    There are over 1500 CF mutations. You should find out which 2 you have (one from mom and one from dad). there is already a drug that is working wonders--not a cure, but for those with healthy lungs (and you're are in great shape from your FEV) is doing wonders and those with problems are doing great (several have come off lung transplant lists b/c of the improvement). the drug is called Kalydeco and the company which discovered it has 2 more in trials which should work for many of the other mutations. Find out what 2 mutations you have and what "class" they are and then you'll know where the research is for your mutations. (Post and we'll help you figure it out.) It isn't a "cure" yet but it will fix the underlying defect and make the CF gene work right. And a cure could be there in 10 years or 20-- (gene therapy, better drugs to fix the function, etc.) The other posts have really said it all--the only thing I would add is that you start getting more involved in the questions, research, etc. because you'll e on your own soon and if you want to have healthy lungs and the amazing future that awaits, you need to keep up with it all on your own. A huge responsibility for anyone--especially for someone young and just starting out, but you know you want to stay healthy and you'll do great!

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  6. #6
    508 is my mutation. is there any good news for that mutation? also, what does the different cf mutations mean? i thought theirs just different conditions like severe, medium, etc.

    So would there be a cure for my mutation in 10-20 years ? is my mutation common or rare or what? this is my first time of even hearing of any mutation in cf other than the severity lol, i just asked my mom

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    Last edited by enzo; 08-15-2012 at 03:11 AM.

  7. #7
    508 is the most common mutation! You are lucky to have that one b/c the med they are doing trials on is for the 508 mutation. I also have that one! I hope there is going to be a cure by that time but no one knows. This new med though sounds like it will be a HUGE help! I already had a transplant so it won't help my lungs any but maybe my weight and sinuses. I am 3 year post transplant and lungs are doing great and I've had no rejection at all! I have a friend that is 13 years post TX!!!! I don't know of anyone living to be 70 or 80 that has CF and has had a transplant though. You shouldn't worry about it though b/c this new med is gonna give you a much longer life and you might not ever have to get a transplant. When I got mine, my FEV1 was around 25% and on oxygen all the time. So don't get too worried and just make sure to take good care of yourself!

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  8. #8
    really? idk why but i thought it was kinda rare, considering they have a medicine for another mutation and not this one. when will the medicines be out for my mutation? also, the other poster said there are two mutations, one from dad and one from mom. but i only know of the five zero eight mutation. do the doctors test for what mutation i have? i guess even tho i have cf, ive been blessed in the aspect of it being a common mutation haha

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  9. #9
    Big thing is keep your self in good shape, and as is with the new meds in the pipe lines if your in decent shape when they hit you shouldn't need a transplant. Well at least that's my hope.

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  10. #10
    Enzo, we've already been down the road of the whole "cure for CF" thing, so I won't recapitulate here. I will say that you're too young AND too healthy, right now, to be freaking out about transplant.

    Survival rates vary by center. Some people have the good fortune to be able to choose from several nearby (as in within 100 miles) centers. Others have to be listed where ever they can get accepted. Generally, survival rates for ALL lung transplants at a center are easily found, but those numbers are NOT a match to the survival rates for cystic fibrosis transplants. Our survival rates are generally higher! One-year survival rates at my center, where I am under their care but not yet listed, are better than 90% for all patients and 95% or better for CF patients. Five year survival is well above 50% for CF patients.

    And yeah, I think if you are estimating your transplant needs at being 20 years out, you can expect a massive leap forward in both cystic fibrosis treatments as well as transplant survival rates. The doctors learn more and more with every single patient they transplant. Hell, it was within my own lifetime that the very first transplant was done! To someone who lived 100 years ago, the fact it can even be done is sheer magic. And the fact that I know more than one transplant recipients who are not 15 or more years post-transplant is a miracle.

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