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Thread: Did you always know you wanted one?

  1. #1

    Did you always know you wanted one?

    So the time has come I have to decide if I want a transplant. Of course it's always been in the way way way back of my mind, but I've never given it thought until I had to, which is now. My health has taken a pretty drastic turn in the past few months and now I have to let my doctors know either way. Here's my problem: I have no idea if I want one or not. It's not because I haven't read a ton about it, read a bunch of posts here; I know what it entails. I just don't know if I do or not and I feel that's not normal!

    My question is, those who decided for or against one: did you always know what you wanted to do, or did something change your mind to decide either way?

  2. #2
    Senior Member
    Join Date
    Sep 2016
    Posts
    173
    I haven't had a transplant yet and have thankfully been able to turn my health around so that I'm too healthy to be listed, however I have gone though and still go though the yearly check in with the transplant tests and doctors. I got the full lecture, did all the reading, looked at what everyone who has had one had to say and what not. I agree it's a difficult decision to make and when you're as exhausted from battling CF and being sick all the time, it makes you wonder if it's worth it. It's completely normal to feel the way you do. I've made my decision though, as I know, lots of times CFers die waiting for the call to come in for their transplant and sometimes that call never comes. So I'm leaving mine to fate. I look at it as if I'm meant to have a transplant and can get it then I'll go through with it and experience what I've missed out on all my life. If the call never comes and I'm not meant to have it then so be it. I've lived a good life and I fought hard, no one will ever doubt that about me.

  3. #3
    I always knew that I would want a transplant. That being said, I I've spent most of my life working very hard to prevent one! But the writing was on the wall last August with an 18% FEV1 and I got my refurbished lungs in October. Yes, it has been a hard road. Yes, I've had complications (scedosporium infection, and sepsis from a Hickman line). And yes, the meds suck. Combining the anti-rejection meds with the sepsis from Serratia made me lose most of my hair. (On the positive side though, I never have a bad hair day and I only have to shave my pits and legs once every few weeks!) BUT, I would do it again without thinking about it. So far, my new lungs have given me 6 additional months with my family and friends. Thankfully I have an amazing support system, and that, plus ones own try-hard attitude, is crucial to success. I have two kids, a husband, parents, and sibs that I am not ready to leave behind. What people say about exchanging one disease (CF) for another (transpland issues), is very true. Sometimes its been scary because it is all so new and unknown, even though I have done a ton of reading. But the joy of RUNNING up the stairs again, or rock climbing, hiking, etc more than makes up for it. You have to want it though because it does take a lot of work, a lot of perserverence, and a lot of willingness to take two steps forward and then one step back, and repeat that countless times. Good luck.
    DDf508, 46 years old, 2 daughters (ages 16 and 12). CFRD, GERD. Married 20+ years. Transplanted at Duke 10/12/17.

  4. #4
    Senior Member
    Join Date
    Jan 2015
    Posts
    279
    I've never wanted a transplant, I would get one for only 1 reason and that is if my kids were still minors. I say that now, but I know the immediacy of the decision could change my mind. We just have so much survival drive, it makes sense for people to want more time living. Hoping I can stay healthy enough to avoid the conversation all together. But for those that have to face this decision, it is extremely personal. I feel like either decision can be right for many number of reason. Wishing the best for you.
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  5. #5
    I never did want one, however, it wasn't my choice to decide that. I was a minor at the time. My parents decided for me. Although, I'm really blessed I did not have that choice. I have been alive for 11 years because of my parents. I still have bad days, but on the good days I praise God for his grace and his glory.

    It's a tough decision. You would have to weigh the pro's and con's. If I knew my husband at the time, I would have easily said yes, but it was because of my parents choice that I actually had the chance to meet my husband.

    Love and 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

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