Equestrian Olympian and can’t ride because my calcium levels are extremely low. I could break a bone and my caregiver/sister watches closely. I do spend time with the horses. I had to lease out my equestrian facility. Declining for 2 years slowly now rapidly. I look sick , very thin. I’m doing my best. My body is breaking down. Juvenile type 1 for 50 years which means I need a kidney transplant sooner than later. If your condition can be managed why fix it?! Doesn’t matter if everything else is working overtime. My quality of life sucks !Health Care symptom is not helpful! My heart is strong and Im on top of my health. My lab work levels are either very low or way to high. UNOS has changed the formula fir calculating the GFR. Which makes mine higher. For 50 years and my underlining conditions that equals disaster. The doctors in my hometown use the old way. Transplant Hospital uses new way. I’m confused and maybe you can help me with some questions. Should I address the GFR with transplant Hospital. When I was checking UNOS updates . I read that now when you get listed you have to earn points. Even if you have a living donor. Transplant coordinator got my attention when I mentioned live donor. She corrected me as if someone needed my live donor then I would get one in return later. UNOS also has a clause about medically urgent. I know the longer I wait UNOS changes policy daily. Are you familiar with UNOS? Transplant Coordinators that I have dealt with don’t keep up with changes or familiarize themselves with UNOS guidelines. Any feedback much appreciated. Thank you

It’s not the waiting. My questions aren’t being directly answered . Transplant Hospital Cordinator’s are not familiar with UNOS updates and changes. Life or death for me. One transplant hospital told me I had 3 years to live. I need a living donor to save my life!