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Jestersgal (@jestersgal)

Polycystic Liver and Kidney Disease

Kidney & Bladder | Last Active: Jun 28, 2015 | Replies (20)

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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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Replies to "I too have polycystic kidney and liver disease. I had a kidney transplant 12 years ago..."

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!

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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