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Upcoming Kidney Tx and have questions

Good afternoon everyone! First off I would like to say thanks for the add and I’m excited to be part of this community. Just a quick intro of me.. my name is Zack, I’m 29 years old and suffer from PKD. I am now in esrd with a gfr of around 6. Currently doing automated PD and it’s keeping me stable. 

I’m working with Henry Ford here in Michigan to get a transplant ASAP from a living donor. My full blooded brother went through testing and was considered compatible and we thought all was good. Unfortunately, they noticed he has 3 arteries in his kidney after the CT scan. This resulted in them denying him as a donor for me. Even though he cannot, we are in the paired exchange program where they actually found me a match from a living donor, and also found a recipient that can except my brothers kidney. We are currently testing blood and doing the cross match to see if it’s a go. My fingers are crossed and my prayers are many!

I would really love to get some insight from people who have been through this process. Has anyone went from PD to a transplant and what were the main differences? I’m just concerned I’ll have more issues with the medication and such from the transplant than I do on PD currently. PD really isn’t all that bad. I hook up at night and it does the dialysis while I sleep. I feel pretty good and live a pretty normal life. I’d be lying if I said the whole thought of the transplant and the procedure doesn’t scare me some. I’ve never had a major surgery where I’ve been knocked out and had to go through a rough recovery. What is it like? Is it really not that bad as I’m imagining? Lol is there a ton of pain afterwards, is it hard to adjust to the medication? How soon after surgery are you usually able to get back to a normal routine? I work full time and depend on my employment to make a living. 

Please provide some info on the kidney transplant process and I will forever be grateful! :) 

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  • I did not go from PD to transplant, but maybe I can give you some reassurance, anyway.

    Kidney transplant surgery is common.  It is dramatic, and I'm sure it is not "easy" for the surgeon, but it really is an everyday procedure these days.  Your surgeon probably does at least two a week.

    I had my surgery on a Sunday morning and was discharged the following Wednesday afternoon.  I had a morphine pump while I was in hospital but don't recall using it (although that doesn't mean I didn't!).  I was give a prescription for painkillers to take at home, but I KNOW I didn't use those.  I got by with the occasional Tylenol.  Pain just was not an issue for me.  I had had a C-Section and a complete hysterectomy, and honestly, my kidney transplant was a tea party in comparison.

    I got back to my normal routine quickly.  I get headachy if I loll about in bed and don't get outside for a walk on aI  daily basis.  The only thing I couldn't do was go swimming, so I missed the summer swim season that year.

    As for the meds, the only problem I had was neutropenia after the first, say, 3 months after my tx.  I was given a Neupogen shot the next two days, and problem solved.

    I hope this helps a little bit.  Good luck!

  • Hi, Zack. I also had PKD. I had ESRD at 9 years old. I went to dialysis for two months and got called for a kidney transplant but unfortunately, I rejected it two years later due to a virus. I was on dialysis for 11 years after that and on August of last year, I received a call for my second kidney transplant. I have been through a lot it has been a tough road for me but I am very patient and strong. I am very grateful for this new chance at life! Yeah, there are some side effecs from our meds, (they go away soon) and you will have pain post transplant but everything will be WORTH going through because in the end you WILL have LIFE and HEALTH. . . you won't have to depend on a machine for the rest of your life. Transplant life is not easy, but dialysis life is WORSE. to me. I am 7 months post transplant and feeling great. I had both kidney and liver. Both are doing well thank God. Just make sure to drink lots of water, take all your medications, and eat healthy. You will be fine. I am sure:)

  • Zack

    I also had pkd but due to reasons wasnt suitable for pd so did hd for 2.5 yrs prior to a cadaver transplant may 2017. I had no other health issues and seems you do not either. The transplant opportunity/gift  you must take and you will not regret. Surgery aphrehension is normal you will be fine. Get untethered and get your Life back. Im cheering you on. L.J.

    • Thank you L.J. I appreciate that! I’m glad to hear it all worked out for you. Yes when the opportunity presents it’s self, I will certainly capitalize on it. The potential match we thought might work out ended up not cross matching, so on dialysis I stay :( yes you are correct, I have no other health issues! My only concern with the transplant is the risk of the surgey itself, as well as the medication side effects that in hear can be horrendous. I’m grateful for the oooritunity I have now, and will be even more grateful if God so happens to send a kidney my way! Thanks so much for the reply

      • I had PKD and a transplant. One thing the doctors said that really stuck with me: PKD patients typically do very well because once you have a new kidney you are cured (PKD will not surface in transplant). So once you have this surgery no more disease. Like others have said, the first weeks will be difficult then you will adjust to meds more or less and steadily resume a normal life - free of a machine.

        Good luck!

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