Looking for others with kidney disease....

allycat5723
allycat5723 Posts: 189 Member
in Motivation and Support
I am 26 years old, and was diagnosed with kidney disease ten years ago. My disease uses cystine (a breakdown of protein) to create large, impassable kidney stones that cannot be broken with lithotripsy. Because of the frequency of my kidney surgeries, my weight seems to bounce around from 140-150 a lot. I began distance running less than two years ago, to be told by my urologist that running is the worst thing I can do to my kidneys. I am beyond bummed out. I'm looking for people with similar problems for motivation, advice, tips. Also just to talk to, since I have never met anyone else with this particular disease. Let's help each other out?

Replies

  • Amml55
    Amml55 Posts: 11 Member
    I'm sorry to hear about your kidney disease. I have never heard of that one, nor do I know anyone who has it. I have had kidney issues as well.
  • allycat5723
    allycat5723 Posts: 189 Member
    Ammi I am so happy to meet you and to have you on my cheering team :) Thank you for the add!
  • andthenwhatjen
    andthenwhatjen Posts: 30 Member
    I have kidney disease. I have only one kidney that has begun the downhill slide into failure. I don't have kidney stones though. That sounds rough. I have a lot to lose and I am a few dozen pounds away from running :) but would love to offer support!
  • jodym124
    jodym124 Posts: 3 Member
    Hi there!

    I have IgA nephropathy, which is an autoimmune disease that causes the antibodies that fight infection to build up in my kidneys. My immune system is basically attacking my kidneys. I'm stage 2 right now, and hoping to hang on here for as long as possible.

    My doctor also recommends me not to run or do any heavy weight lifting, so I just walk briskly on the treadmill every day and use the stationary bike, too. I'm *finally* starting to lose weight. It's taken me a long time to find the right diet and workout plan that works for me, with all of the limitations placed on us with this disease.

    My kidney disease diagnosis has been my biggest motivator, though! I know it's so important for us to not develop diabetes, high cholesterol, and blood pressure. I have had high blood pressure (it seems to be gone now), and I want to make sure it doesn't come back. I'm also hoping to have kids in the near future, which I know is always risky with kidney disease, but losing weight will help reduce the risk of preeclampsia.

    Good luck and try not to lose hope! You can still lose weight without running and be sure to drink plenty of water! I recently read a new study that said it helps slow down progression. :)

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