Polycystic kidney disease (PKD): Reviewing options for transplant

Posted by tomo @tomo, Feb 14 10:26pm

I have polycystic kidney disease I went to UofKC I’m on Medicare and basically I’m sol cause I live to far, Marshfield. MO can’t afford to stay in Kansas City after the transplant over $48000 do the Drs. in Minnesota do pkd transplants ? I have had this over 5 years now

Hi @tomo
I am sorry to hear about your situation.

I had PKD too and was treated at Mayo Clinic in Minnesota. I had my "bad" kidneys removed and my new living donor kidney transplanted at the same time. For housing my husband and I stayed at the Gift of Life Transplant House which is a very minimal charge for patients undergoing transplants. There are shuttles that take you to the Clinic, bloodwork etc.

I think you are smart to consult with more than just one place. Are your kidney labs pretty stable? Do you know when you'll need a transplant? Please feel free to share any details you are comfortable with. Our online community is filled with helpful people. You may want to learn more in the Transplant section of Connect.

Jolinda

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@tomo, I want to welcome you to Mayo Connect. Maybe I can offer some information that will help you get some answer to your questions about Transplant at Mayo.

Here is the link to the Mayo Clinic Kidney Transplant Program where you will find out the information about appointments, conditions treated, costs and insurance, lodging and travel. There is also a "Contact Us With Questions" section where the Mayo Clinic transplant staff can answer your questions.
https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197

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@rosemarya

@tomo, I want to welcome you to Mayo Connect. Maybe I can offer some information that will help you get some answer to your questions about Transplant at Mayo.

Here is the link to the Mayo Clinic Kidney Transplant Program where you will find out the information about appointments, conditions treated, costs and insurance, lodging and travel. There is also a "Contact Us With Questions" section where the Mayo Clinic transplant staff can answer your questions.
https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197

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I was told by my Dr. That PKD is a very hard transplant because the cystic can attach themselves to other organs, I have had this for over 5 years now, I still produce urine, I do get backache I do get blood in my urine and I get bad abdominal pain

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@jolinda

Hi @tomo
I am sorry to hear about your situation.

I had PKD too and was treated at Mayo Clinic in Minnesota. I had my "bad" kidneys removed and my new living donor kidney transplanted at the same time. For housing my husband and I stayed at the Gift of Life Transplant House which is a very minimal charge for patients undergoing transplants. There are shuttles that take you to the Clinic, bloodwork etc.

I think you are smart to consult with more than just one place. Are your kidney labs pretty stable? Do you know when you'll need a transplant? Please feel free to share any details you are comfortable with. Our online community is filled with helpful people. You may want to learn more in the Transplant section of Connect.

Jolinda

Jump to this post

I want to thank you for the reply, 2 years ago my wife and I went to u of k to talk and listen about transplant, spent all day there, did abunch of talking we asked a lot of questions, they said they would draw blood and take xrays the took xrays no blood, told them that I live about 2-3 hours away, I only have Medicare, bottom line is I spent over 300 just to find out that I did not meet there standards, that I would need to come up with at least 35 thousand and then they would consider me, so when I got the phone call it just burst my bubble, they say it is a gift of life ya right, then I told my Dr. And social worker what they said. All I can do is just wait it out and see what happens

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@tomo, I have gathered some information from Mayo Clinic about PKD. I hope that you and your wife will find some answers to some of your questions from Mayo's point of care. You will also see contact phone number or email address where you can speak to someone with questions relating to your financial questions.

-Infographic: Transplant for Polycystic Kidney Disease
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/multimedia/transplant-polycystic-kidney-disease-infographic/ifg-20441503
-Polycystic kidney disease
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820
-Kidney transplant for polycystic kidney disease
https://www.mayoclinic.org/departments-centers/kidney-transplant/polycystic-kidney-disease/gnc-20203229

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