Rocking Kidney Disease : I was diagnosed... - Kidney Transplant

Kidney Transplant

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Rocking Kidney Disease

Curvychic_76 profile image
9 Replies

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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Curvychic_76 profile image
Curvychic_76
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9 Replies
pgjohnson2012 profile image
pgjohnson2012

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.

SaraEads profile image
SaraEads

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.

Curvychic_76 profile image
Curvychic_76 in reply toSaraEads

Thanks so much for the advice.

janevir profile image
janevir

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!

Curvychic_76 profile image
Curvychic_76 in reply tojanevir

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

nuttyroo profile image
nuttyroo in reply tojanevir

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.

pgjohnson2012 profile image
pgjohnson2012

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

Curvychic_76 profile image
Curvychic_76 in reply topgjohnson2012

Yes. I’m so glad that I found it.

Gotthecall_123 profile image
Gotthecall_123

Hi my name is Dave I’m a 56-year-old male was on dialysis for seven years finally had a transplant eight months ago I am so very happy to find this community I never knew it existed while on dialysis now that I have a transplant I feel like I need to be part of the community if you have any questions please don’t hesitate to ask I’m almost looking to meet new friends 🔌🙏😛

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