PKD kidneys removed at time of transplant

Posted by jolinda @jolinda, Jul 24, 2018

PKD (Polycystic Kidney Disease) caused my kidneys to grow to be huge! Not only was I in stage 5 of kidney failure when I arrived at Mayo Clinic, which is bad enough but I also was miserable because my native kidneys grew so large I had trouble eating, sleeping, moving and breathing. My scans showed them pushing up in my lungs and pushing down into my hip bones. NOT FUN!!! I was very blessed to have a healthy living donor but I was worried that even after a new kidney I'd still have a poor quality of life because my giant old, non-functioning kidneys would still be there causing so many problems. I was doubly blessed to meet Mikel Prieto when I was at Mayo clinic in Rochester, MN who is a brilliant surgeon and was already researching the possibility of doing both surgeries at once (1.bad giant kidneys out AND 2.new healthy kidney transplanted). I am so proud to say I was the first patient who received a laparoscopic (tiny, tiny incisions) bilateral native nephrectomy (both bad PKD kidneys removed) with a simultaneous living donor transplant (awesome new kidney transplant from my healthy friend Dawn) all at one time. After surgery I was 22lbs lighter!!! Can you imagine, that's like 10lb twins… YUCK!!! This is a complex surgery and it is not right for everyone but it improved my quality of life beyond measure. I wanted to share my story so others are aware that this type of hope exists but also I want to find out if anyone else has a similar story.

Interested in more discussions like this? Go to the Transplants Support Group.

The simple answer is that living donor's are shown to last much longer respectively.

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@rosemarya

@cehunt57
I have missed your presence here, and I am happy to hear good news that your kidneys are benefiting from your dedication to taking care of them. This sounds like a winning situation for you – more time for God's plan to unfold around you and more time for your donor to step forward.
"There is an appointed time for everything, and a time for everything under the heavens," Eccl 3:1

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@rosemarya, thank you for the encouragement and the reminder of such a great verse! Cheryl

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@jolinda

@cehunt57 Good for you that you are taking such great care of yourself. Having more time will certainly help you as you continue your search for a living donor. I can completely relate to how difficult it is being patient as you wait, I struggled with that. I would suggest praying for your donor, he or she is out there somewhere praying to find you! Best of luck and thanks for the update.

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@jolinda, thanks for the encouragement and the reminder to pray for the donor. I don’t believe in luck; it is in God’s hands. Cheryl

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@mlmcg

I have a question. Why do so many people feel that they have to have a "live" kidney donor? I did not have a live donor and have had my kidney for over 10 years now. Every time I have my annual transplant check up, I'm told "Keep doing what you are doing. See you next year". I also that a check up every 3 months with my PCP, blood work every 6 weeks and I'm told "Keep doing what you are doing. See you in 3 months". I have changed my lifestyle to the one that takes care of my kidney. I have had other health issues that makes keeping a happy kidney a little more difficult. But I am doing it, I am happy, my body is happy, and we are keeping the kidney happy.

If you do not change your lifestyle after the transplant, whether you have a live donor or not, you may have a happy kidney trying to live in an unhappy new home. I still have the question. Why do so many people feel that they have to have a "live" kidney donor?

mlmcg

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Hi @mlmcg, I'm confident that members here in the Transplant group agree with you. Taking care of one's body and making healthy lifestyle choices honors the gift of life that a donor (deceased or living) has made.

It's also important to note that organ transplant is not always necessitated because someone made poor lifestyle choices. There are many reasons that necessitate organ transplant. Whatever the reason, healthy lifestyle choices post transplant make sense. I see so many of you sharing how you take care of your mind and bodies. You strive to eat well, exercise, drink water, avoid infection, reduce stress, get restorative sleep, etc. In short, you choose health.

To your question about living vs. deceased donor, I'm not the most knowledgeable in this arena. A quick google search revealed this 2013 study. https://www.ncbi.nlm.nih.gov/pubmed/23746118 The study concluded "deceased donor liver transplantation (DDLT) and living donor liver transplantation (LDLT) have different complication profiles, but comparable hospital stays and survival rates. In areas of deceased donor organ shortages, LDLT offers an excellent alternative to DDLT because it facilitates access to a liver transplant without compromising short- or medium-term recipient outcomes."

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@mlmcg

I have a question. Why do so many people feel that they have to have a "live" kidney donor? I did not have a live donor and have had my kidney for over 10 years now. Every time I have my annual transplant check up, I'm told "Keep doing what you are doing. See you next year". I also that a check up every 3 months with my PCP, blood work every 6 weeks and I'm told "Keep doing what you are doing. See you in 3 months". I have changed my lifestyle to the one that takes care of my kidney. I have had other health issues that makes keeping a happy kidney a little more difficult. But I am doing it, I am happy, my body is happy, and we are keeping the kidney happy.

If you do not change your lifestyle after the transplant, whether you have a live donor or not, you may have a happy kidney trying to live in an unhappy new home. I still have the question. Why do so many people feel that they have to have a "live" kidney donor?

mlmcg

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@mlmcg congratulations on your new kidney turning 10. It sounds like you are doing a good job keeping it happy in a happy new home! I think one of the reasons folks are looking for living donors (me at least) is because the UNOS waiting list is so long and is getting bigger/longer every day. There is some research that shows that a living donor transplant is more successful and lasts longer than a deceased donor transplant and there are some practical timing/scheduling issues that can be dealt with if the transplant comes from a living donor. Having a living donor also helps shorten the UNOS waiting list for others. As a person of faith I believe the transplant will occur at the right time and from the right source. I am nearly 13 years post pancreas transplant (deceased donor) and am busy trying to keep it happy in a happy body. I’m also trying to stay as healthy as possible while waiting for a kidney transplant. I just returned from annual pretransplant evaluation at Mayo and my listing has been changed to inactive because my kidney function has improved and I’m too healthy for transplant at this time!

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@cehunt57

@jolinda, thanks for the encouragement and the reminder to pray for the donor. I don’t believe in luck; it is in God’s hands. Cheryl

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@cehunt57 Fair enough…Blessing to you and your future donor. 🙂

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Thanks for the "study" Colleen, now if they would do one for kidneys. Anyone who needs a transplant is for a different reason than anyone else. Which I'm sure makes it fun for the doctors.

When I was on dialysis almost everyone else was there because they did NOT take care of their bodies. No one told me why I was put on the list for a transplant when I was creeping up on 60, when most people are taking off. I had beaten the odds with stage 4 lymphoma in 1975, and I had stayed off dialysis for 3 years after I was diagnosed with end stage renal failure in 1999, just by changing my diet. After my transplant I have had ostomy surgery with about a third of my GI track removed as well, 2 strokes while I was in the hospital, and when I was discharged the doctors did not know if I needed Hospice or Palliative Care. I received 2 months of rehab came home to take care of myself. I do not drive, I have a list of friends who drive me to appointments, no questions asked. I am even driven to stores to do some shopping and my drivers may buy more than I do. Oh, I live by myself, cook my own meals (microwave), and try to do for others as much as I can.

I am sure that the reason I received the kidney when I did was that the doctors knew I would take care of it. My brother had a live donor, he gained weight looked 8 months pregnant – he liked his ice cream and cookies every night – did not have any medical check ups – when he died his PSA was over 200 – he did not exercise, was younger than me, and should have outlived me. He died over 18 months ago. Each day I am able to do more and I will not let the strokes get me down.

All I'm saying is that if you do not take care of your body before the transplant the chances are good you will not after the transplant.

mlmcg

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Here is a 5 minute video that will help you understand the importance of having a living donor to undergo kidney removal surgery which helps certain PKD patients. The risks of undergoing this groundbreaking method and the importance of a living donor are explained. Watching this video can empower you with the information needed to explain it to someone who might be suffering like I was.

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@jolinda I would like to thank you for being the 1st of Dr. Prieto's revolutionary procedure. I am so very proud to say that like yourself, the man that I refer to as my saint, Dr. Prieto performed the same procedure on me on 12-13-17. I believe that I was close to #100. Also, my twins each weighed 22 lbs total as well. Understanding that these procedure isn't for everyone, It still hurts to hear about others who have to have 2 possibly 3 surgeries total with transplant and 1or 2 nephrectomies. I just couldn't imagine. I'll never forget the day that I met with Dr. Prieto and I told them I wanted my kidneys out with transplant. He looked me right in the eye and said, " You will have both of them out with the transplant. 1 and done." I just looked at him in amazement and he got that grin of his, on his face. Priceless. My wife was match tested a month later and we were informed that she could give me a kidney a week after. A few months later my life changed forever. I get choked up with emotion just thinking, let alone talking/typing about Dr. Prieto. He had such an impact on my life not to mention that he is such a friendly and good down to earth person. Thanks again Jolinda!

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@grady1

I am thrilled for both you and your wife, what an incredible couple you must be!

I agree it is a lifechanging procedure and required great skill and bravery for Dr. Prieto to attempt. We are blessed to have benefitted from this groundbreaking surgery. I too know PKD patients who have been cut from top to bottom, had to live with no kidneys at all while they healed or endured multiple surgeries (some over the span of years) in an attempt to achieve results like ours with the "one and done". I cannot say enough good things about Dr. Prieto, he is a shining example of the spirit of compassionate innovation which thrives in the talented men and women of the Mayo Clinic.

Congratulations to you and your wife and welcome to the next chapter in your journey together.

All my best, Jolinda

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