Polycystic Liver and Kidney Disease

Posted by Jestersgal @jestersgal, Nov 14, 2011

Would like to meet others with this Disease. I am now on the transplant list for a Liver and kidney…

@bpurdy

I had a kidney transplant in 2007 at Mayo in Rochester MN for PKD, and also had my native kidneys removed 1.5 years later. It’s a difficult surgery and recovery, but now I’m doing very well now. I’d be happy to answer any questions you have. Dr. Dean was my transplant surgeon, and Dr. Prieto did my kidney removal. Both of these surgeons are incredible. I wish there were no need for the immunosuppressants after surgery (and for the rest of your life), but the trade-off is worth it!

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I’m happy to help, so no worries about being nosy! Yes, I also have PLD. My liver is quite large, but functioning normally. My recovery from kidney transplant was up and down. I got CMV about 3 months post-transplant, which was scary but Mayo docs skillfully guided me through and now I have antibodies against CMV so I won’t get it again. I’ve had other setbacks, sometimes not even a doc from Mayo can understand, but now have pretty good kidney function and am weightlifting and feeling great!

Hi. I’m new to this discussion board. I have PKD (diagnosed long ago), and have recently learned that the numerous, small cysts in my liver have progressed to full-on PLD. I also have gastroparesis (delayed stomach emptying). With the gastroparesis, keeping weight on was already a struggle, but several weeks ago I began vomiting, and things are going south on me. Currently, my quite enlarged liver, in combination with my small frame, are suspects. Have any of you with PLD had daily vomiting, and if so, what treatments have been helpful? Also, is there anyone at Mayo who is particularly good with this sort of thing? I’m in a large town/small city where there is no special expertise.

@tgirl

Hi. I’m new to this discussion board. I have PKD (diagnosed long ago), and have recently learned that the numerous, small cysts in my liver have progressed to full-on PLD. I also have gastroparesis (delayed stomach emptying). With the gastroparesis, keeping weight on was already a struggle, but several weeks ago I began vomiting, and things are going south on me. Currently, my quite enlarged liver, in combination with my small frame, are suspects. Have any of you with PLD had daily vomiting, and if so, what treatments have been helpful? Also, is there anyone at Mayo who is particularly good with this sort of thing? I’m in a large town/small city where there is no special expertise.

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I do not have PKD, however, I did recieve a liver/kidney transplant at Mayo in 09 for PSC. I was referred to Mayo by my local med center because of complications they were not able to treat. So I can understand a little of where you are ‘coming from’ in a small town. When you are a patient at Mayo, you are recieving the expertise of a whole team. You might be scheduled with a particular doctor in the PKD field, but I can assure you that your treatment is coordinated and fine-tuned to fit your own needs. It is an amazing experience. I wish you the best possible outcome.
Rosemary

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@mariecobbs

I too have polycystic kidney and liver disease. I had a kidney transplant 12 years ago and doing well.

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Hi – i was diagnosed a year ago with PKD and PLD – stage 1. I already have some distension in the belly. How drastically did you change your diet when you were first diagnosed and how long did you have it before you needed a kidney transplant and was it difficult to get a kidney? Thanks so much in advance!

@mariecobbs

I too have polycystic kidney and liver disease. I had a kidney transplant 12 years ago and doing well.

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Although I did not have PKD or PLD, I did have a liver and kidney transplant. Due to an earlier diagnosis of PSC (liver). I was already eating a healthy diet as directed by GI. Eventually I developed nausea, and lost my taste for foods. I sipped tea, flat ginger ale, very cold ensure (sometimes with ice cream). I nibbled crackers and toast. Sometimes soup was good. I also found that a sprinkle of cinnamon, or a twist of lemon juice gave a little flavor. If I had meat, it had to be cooked in a broth or thin gravy and very soft (like stews). Acute renal failure led me to need a kidney, too….I suggest that you talk with your transplant doc about how long you might expect to wait. I know that everybody has a unique situation, and there is no one answer. I wish you a successful outcome. And I want to tell you to hang in there for however long it takes for you to receive your new organs. In the meantime, concentrate on taking care of you!

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