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  • Intro

    Hello, Dear Ones! In 2007, I had surgery to remove my bladder and replaced with an Indiana pouch made from my intestines. I catheterize 4 - 5 times per day. I had Interstitial Cystitis and my bladder had shrunk to about the size of a walnut. Since 2001 I had been suffering with going to the bathroom almost 40 times a day - little sleep at night. Surgery for me seemed the best route. I was recuperating and was with another doctor who told me my GFR and Creatinine were heading toward serious kidney problems. I was just staying for the recuperation and was moving again for my work. I saw another nephrologist and he started talking about transplant right away. I was stunned. My gfr at that time was 35 and creatinine was about 1.6. fast forward from 2009 to today. I have seen two nephrologists during the last 11 years. Both have been watching my blood work and it has been steady. Even though I modified my diet my creatinine has gone to 1.9 and sometime 2.2. I saw a urologist and he suggested that the cause of my CKD could be that when I had the surgery there was some scar tissue where the ureters were reconnected to the kidney and the pouch. I've been cautiously optimistic until my present Dr. started the dialysis/transplant discussion. It was actually my first visit with him. I am scared of either one. I have 3 or 4 people who have offered me a kidney. My right kidney is not delineated in xrays and scans. The left one must not be doing too well either with the numbers that showed up. All my other electrolytes are fine. No other numbers are out of kilter - just the kidney related ones. I am a School Counselor in a volunteer position. I've been looking at options for dialysis just in case. I don't know my timeline because I was so stunned in the doctor's office that I couldn't think of anything. Now I'm getting my questions together. Any suggestions for what I should ask?

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  • #2
    Are you going through dialysis ?


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