• Profile photo of cc53068cc53068
    Member
    #171205434156

    I don’t think those numbers are particularly accurate. It differs by center, but I think it’s more along the lines of 80% survive past 1 year, and 50% survive past 5 years. I have almost 400 CF friends on FB, a LARGE number of whom have had lung transplants, and I’ve only ever heard about one person dying as a result of the surgery (and that person isn’t even a FB friend)

    Profile photo of McGinleyMcGinley
    Member
    #171205434137

    Enzo

    My wife is 14 years post tx on 7th April this year. My good friend celebrated 20 years post tx last September.
    Drugs and medical knowledge is moving on all the time , my wife has changed one of her drugs and added a new one in the past 3 years due to successful trials and information available.

    Erik

    Profile photo of lady01shadowlady01shadow
    Member
    #171205432715

    Congrats MELrod2004!! I totally agree nothing better than a great attitude in trust in God!! Best Wishes!!!

    #171205432700

    Enzo,
    I was diagnose with IPF in 2011. I had a double lung transplant on 9/12/11. I looked at the statistics also but decided I wanted to be part of the survival statistics even it was the smaller amount. I believe the things that have gotten me thru the surgery and the last 16 months has been a positive attitude (no negative thinking) and faith in God! I have been truly blessed. Please don’t stress on what i

    Profile photo of rachaelbyersrachaelbyers
    Member
    #171205431274

    I think you have no need to do a transplant. Try to remain as healthier as you can, work out, do your medicines… Possibilities are that within a few decades, we’ll have treatment to fix all mutations!

    Profile photo of welshwitchwelshwitch
    Participant
    #171205290631

    Enzo,Sorry I don’t do internet on the weekends so missed your questions. Most likely you have 2 copies of 508, but ask your mom or your CF doctor. Kalydeco is already approved for one mutations and will be soon (year or so) for others that are similar. Right now there is a drug called VX-809 which is moving to Phase III testing for those with 2 copies of 508. Phase III is the phase before it goes to the FDA for approval. There is another drug that is suppose to be even better called VX-661 which is in Phase II and results will be out early next year. So it will be about 3-4 years for VX809 and 4-5 for VX661 assuming all goes well which I have confidence it will b/c it is the same company that did Kalydeco and they tested in test tubes before and got good results. These cannot fix lung damage though so as everyone else said the key is to do your treatments, exercise and be ready for these drugs. Also, you might well consider getting into a trial because you can then get access to these drugs before everyone else!! I don’t know if 809 is doing <18 but you'll likely be 18 in time to do VX661. I think that would be a great thing to do because you'll get the chance to jump start with these drugs (usually those who do trials get to keep on the drugs after the trial once they are moving to the FDA!!) At your next CF appointment, why not ask if they are doing the VX809 or VX661 trials at your center or another close by and how you can get involved???

    #171205290756

    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.

    Profile photo of rose4calerose4cale
    Member
    #171205290667

    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.

    Profile photo of bohsmugbohsmug
    Member
    #171205429379

    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

    Profile photo of ChadChad
    Member
    #171205321853

    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!

    Profile photo of bohsmugbohsmug
    Member
    #171205292588

    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

    Profile photo of welshwitchwelshwitch
    Participant
    #171205161276

    Enzo,
    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!

    Profile photo of bohsmugbohsmug
    Member
    #171205422413

    (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?!

    Profile photo of MsCali24MsCali24
    Member
    #171205400705

    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.

    Profile photo of gothicfairygothicfairy
    Member
    #171205401827

    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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