Kidney Transplant
839 members319 posts

Rocking Kidney Disease

I was diagnosed with FSGS when I was 18 years old. I was very lucky and didn’t have to start dialysis until I was 40 years old. I’ve been on dialysis for 6 months. I’ve been on the transplant list for 7 years, but wasn’t active because my kidneys were still holding on. I received several offers but declined because they weren’t good matches. I feel like with my declines I’m allowing someone else an opportunity. I’m excited to be apart of this community and meet people and get some of the answers to some of the many questions I have. Thanks so much for sharing your experiences through this journey. I wish everyone the best. :)

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I had 2 Kidney biopsy but they came back inconclusive. So they made the judgement to go ahead and put me on dialysis. I used the restroom a lot and they couldn't understand why I was going to the restroom so much. No one ever told me how much function my kidneys had.

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I was diagnosed with FSGS at age 40 and began dialysis at 60. I was on peritoneal dialysis for 2 1/2 years and received a kidney transplant in 2003. The transplant is now more than 14 years old --- soon to be 15. My creatinine last week was 0.9 so I encourage you to be positive, exercise, and eat a healthy diet, light on the proteins.

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Thanks so much for the advice.

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I was diagnosed with FSGS at age 15 and was transplanted almost 11 years ago (at age 48), a gift from my sister. My FSGS is now in remission (I am disease-free), thanks to Rituxan therapy (three series 10 months apart). The last one was 5 years ago. Nice to meet you!

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Thanks for sharing. How did you find out about Rituxan therapy?

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That sounds very interesting and I’d like to find out more about it. I do plasmapheris 1x week and getting frustrated because my fistula keeps acting up. Anything is better than dialysis though.

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I'm just as thankful as you are for this community.

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Yes. I’m so glad that I found it.

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