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Thread: Double Transplant for CF?

  1. #1
    kenna2
    Guest

    Double Transplant for CF?

    I just received my packet for my transplant testing and was reading through the material. I will be going to Cleveland Clinic. While my lung functions are still in the mid 40's I'm curious as to what I've been reading. I know I won't be listed as a critical person (my doctors wanted me to get on the list so I'm there in case I get really sick and they start to fall again). In the packet it said CF patients usually get a double transplant. I was just curious if this was the case for everyone or have any of you only gotten a single transplant. I would think it would vary per patient, but it sounds like at Cleveland Clinic that this is a standard. Wondering what your experiences have been?

  2. #2
    Senior Member
    Join Date
    Sep 2013
    Posts
    101
    What's very common is for CF lungs to be colonized with various bacteria, most commonly pseudomonas. I know my lungs have two different strands of PA and MRSA may or may not be in there. So if you only transplant one, the other one's still colonized and will just infect the other one. Plus your immune system's suppressed after transplant for rejection purposes, so it not a good idea to leave the sick lung. I actually don't know if only one's been done, but that's the logic behind the double transplant.

  3. #3
    kenna2
    Guest
    That makes sense...thank you

  4. #4
    Super Moderator
    Join Date
    Dec 2011
    Posts
    758
    It was common, in relative terms, for single lung transplants when I was a teen in the 60's. CF patients probably weren't the beneficiaries of single lung transplants, smokers with COPD and cancer were all too common.

    Not really good news but they discovered that one kidney being transplanted made sense and one lung had poor results. Leaving an infected damaged lung with just 20% of the total 40% PFT is not only going to harm the new lung, that lung is making you sick beyond the lower oxygen capacity.

    In the final analysis, it is a wonderful thought, twice as many CFers could be helped. DLT is done because of the odds of success. The pulmonary system is just that, a system. By removing an entire system and transplanting the entire system into your chest is both easier and more successful.

    It always bothers me that people are always on death's door before they can do a transplant. Only one reason can be behind this cockeyed logic, no ready supply of lungs. The first and best way to increase the numbers of donors is to use the voice you still have. Talk to anyone who will listen. Stump speech at school, church or whatever opportunity comes along.

    Good luck and have faith,

    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  5. #5
    Oboe and LittleLab are on point with this. I have nothing to add but just wanted to say Good Luck! Hopefully you can hold off on the transplant for as long as possible! Smart idea listing now in case things take a drop too quickly. I've heard great things about Cleveland Clinic. I know serval people on Facebook that have gone there. I had mine in Pittsburgh 8 years ago. Hugs,
    AMBER 26yrs CF (Double F508DEL) Married
    CFRD, Double Lung TX 3-13-07, Kidney TX 7-2-07
    G-Tube, insulin pump, & cochlear implants

    Amber's Blog- A Creative Newmie

    God is within her, she will not fall -Psalm 46:5

  6. #6
    By removing an entire system and transplanting the entire system into your chest is both easier and more successful.

  7. #7
    However, they cant transplant your sinuses too, so get them in tiptop shape prior to transplant if you can.

    I also wanted to mention that when transplanting the entire system, it is not a given that you get ride of the nasty germs. I apparently had scedosporium (sp?) prolificans in my old lungs and some of them made it over into my new lungs. A major bummer, since SP is a @itch to get rid of and has a high mortality rate. Never even knew I had it, but the little buggers tagged along for the ride.
    DDf508, 46 years old, 2 daughters (ages 16 and 12). CFRD, GERD. Married 20+ years. Transplanted at Duke 10/12/17.

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