Ms Lindsey

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I was diagnosed with MSK in 2014 after retaining so much water seeing numerous doctors.  I had a lititripsy only to come out of surgery with the stones still in me.  They found out my kidney was actually falling and kinking my urter so the could not retrieve the broken up stones. Now I'm trying different foods and have been trying to stop the pain meds for over a year now.  It's very hard when your in pain daily.  The fatigue before I pass one is also draining me.  I have two kids my husband refuses to accept this condition and I'm just trying to do whatever it takes to get better.  The stress and anxiety of not knowing when I will be bed ridden is horrible.  If you can please give me some guidance on what foods to eat.  My urologist gave me a water pill I just throw up right after taking it.  I'm producing Uric acid, calcium oxyolate and cystine stones.   I'm trying to cut out all beverages other than water but it's extremely hard.  I know I can do this without having to take pain meds my whole life.  Please if you know what foods I can and can not eat I'm open to anything at this point. 

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  • Posted

    Lindsey, 

    I'm not a doctor and so am not a good source for specific information for you. Instead, I just want to encourage you to request an appointment with a renal dietician. It sounds like you would benefit from some professional help regarding your diet.

    As far as the ups and downs those of us with chronic kidney disease experience, it is certainly difficult. It's frustrating. Many don't understand. One of my closest friends had extensive internal bleeding following a gall bladder surgery earlier this year. This caused moderate levels of anemia and low blood pressure. She was shocked at how horrible she felt and how long it took to move past both issues. After she recovered she looked at me as we were eating lunch one day and said, "I don't know how you do it. How do you manage day after day? I was so exhausted and dizzy, I can't imagine how you function day after day."

    So talked about what treatments I was on and how they helped me function. I also talked about how I had modified my daily routines so as to conserve my energy. I also highlighted the importance of exercising daily and how it helps my energy level.

    She is the only person in my life, beside my medical team, who has any real understanding of what this is like on a daily basis. I can understand. I would not have been able to understand this before experiencing it myself--and I grew up in a family where chronic kidney disease was fairly common. I never knew my father when he wasn't battling chronic kidney disease. And yet I didn't really understand what this feels like and the daily challenge persons with CKD experience until I reached stage IV CKD.

    So, I hope you continue to interact on this forum. Here you will meet many people who have travelled this road. They understand. And some may have experiences very similar to yours. I find it helpful and encouraging to visit with persons in this forum🐶

    Best wishes,

    Marj

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    • Posted

      Ok thank you.  Yes I had a friend who recently passed away.  She had over 28 surgeries to remove stones. Many stents.  Her and I shared our trials with this together.  Now I am hoping this site can help.  A good diet and pain mgmt plan alternative to pain medicine will help.  Thank you.
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  • Posted

    Hello,

    Like you, I had a uric acid kidney stone.  They had a few goes at getting it out, but simply pushed it back up into my kidney, damaging it.  I also a lithotripsy which didn't work.  Eventually, they broke the stone up under a general anaesthetic with a laser. I now take allopurinol to keep my uric acid down but my surgeon said that if I got another one, they would give me a massive dose of allopurinol that would dissolve it. Luckily I have not had a repeat.  I should ask your doctor about allopurinol. It doesn't have unpleasant side effects.

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    • Posted

      I will definately talk with my urologist about it.  He prescriped a water pill but I keep throwing it up about 20 mins after taking it.
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  • Posted

    Hi

    I am sorry to hear of your condition and of course your pain.  The best cause of action would be ask your GP or consultant to refer you to a dietitian they should be able to advise on a diet tailored to you.  Regarding your husband not accepting your condition try explaining (I am sure you have done so already) that it is what it is and you would rather the energy went on supporting you it will be hard for him to see you at your worst, people deal with things in different ways it would be boring if we were all the same.  He is more than likely reacting in this way as he doesn't like seeing you in pain.  I wish you the best of luck xx  

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    • Posted

      Thank you Helen.  Yes I'm definately doing some diet changes and a dietician is what I think I need to combat these stones.  Being in pain 3 weeks out of a month isn't fun at all but.  Thank you so much!

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