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Looking for other pancreas only transplant recipients
Transplants | Last Active: Jan 21, 2022 | Replies (42)Comment receiving replies
@pamherman you sound quite a bit like me. Diabetic for 47 years and stage 4 CKD. The difference between us is I had a pancreas only transplant going on 17 years ago. It did not “cure” the diabetes but was my own personal miracle anyways. Complications of diabetes reversed &/or stabilized and the CKD stayed mild/moderate for 11 years. Kidney function started declining 5-6 years ago. I’m pretty good with acronyms (like CKD) but I don’t know what EPI means. It is great that you are going to Mayo for Pancreas Transplant evaluation. I went there in 2016 for Pancreas/Kidney Transplant evaluation. My pancreas transplant in 2005 was done at a another transplant center. Mayo seems way better for so many reasons: thorough, multi disciplinary collaborative team approach, meticulous follow up, good communication … etc. I was accepted & approved for kidney transplant and have continued with Mayo for a yearly update/ review until the pandemic. My local providers continue to monitor my conditions. If and when another transplant or 2 are needed I will go to Mayo. You will be in good hands there. Prayers and best wishes for your improved health in the New Year.
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Hi, thanks for writing back. EPI is Endocrine Pancreatic Insufficiency. I spent two years undiagnosed , it was horrible. I kept thinking I was so sick because of Kidneys. Well, my old endo figured it out. The type 1 for so long has damaged the pancreas part for digestion. Every time I eat, I have to take enzymes starting with the first bight to cover what I’m eating, kinda like insulin to food quantity. Without the pills I’m nearing death by toilet and throwing up violently. I am a professional equestrian and ended up leasing out my farm / house and business. I went thru a few Drs that said kidney disease doesn’t make you feel sick, which I know it depleted me a whole season of showing horses, I now get the whole picture and I wish that Dr had sent me for further testing. So another year, I’m like a skeleton and my Endo Dr. from Penn figured it out. I live in Va Beach and Chesapeake but went to Philly for Islet cell Transplant Clinical Trial in 2010 and 2011. Ok, I’m praying for Pancreas to heal my Type 1 but I know the EPI will now be here forever. God, to be able to ride, not hear those f….. beeps and alarms and noises that are always ringing even when they are not. Crap, I would settle for no gadgets within twenty feet of me. Mayo has really impressed me and I have never been there. I’m so over Dr’s and after seeing Dr. Jarmi’s video, I have my first app with him. Like meeting a celebrity. He was so cool on the video. Ok, some f….. alarm is now beeping. Let’s stay in touch. Pam Herman