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Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)
Kidney & Bladder | Last Active: Jun 1 4:57am | Replies (216)Comment receiving replies
You are so correct! It makes you aware how unimportant your survival is if somehow UNOS gets there act together. The policies when having an underlying condition for example type1 juvenile diabetic for 50 years , stage 5 kidney failure . EGFR new policy adds 4 or more numbers that of course is over 20. EGFR # to me is the formula used last 50 years . Local doctors and my transplant coordinator weren’t aware of new formula. Dialysis isn’t an option. I need a kidney because of for 50 years type1 juvenile diabetic. My EGFR before policy change way below 20. Transplant center implied that numbers weren’t considered because the centers have to be within their evaluation. Hospital numbers. Love some input . Now I’m having severe GI problems weight very low. Longer I wait my organs work overtime and seem to be stressing other major organs . Thank you
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Quick note: if they can manage a condition they won’t find a cure. To much money for pharmaceutical companies and doctors with deep pockets. As long as UNOS is run by deep pocket board members and have never dealt with a loved one . That individual isn’t in need of an organ with or without an underlying condition won’t get one. Numbers are what count to them. Underlying condition more high risk. The UNOS site says the same thing 100 different ways. We need more educational individuals to step up and take every scenario in account for all organs. Every loved one deserves to know they are irreplaceable and worthy of saving. Please check out UNOS and board members .