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hello1234 (@hello1234)

Transplant: Amoxicillin for dental appointment

Transplants | Last Active: Nov 26, 2021 | Replies (53)

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@hello1234 after 16 years some things about the pancreas transplant are hard to remember and some not at all. Initially the transplant was connected to my bladder supposedly for a place for pancreatic enzymes to be drained to and monitored to keep an eye on danger of rejection. These enzymes are digestive enzymes (you can find them in drain cleaners!) and they are corrosive. That was one thing that bothered me about the transplant. That part of the transplant didn’t sound like a good idea to me. (I’ve been told that method is no longer used.) Sure enough those enzymes really bothered my bladder. I started passing big clumps of blood in my urine. My transplant was 11/30/2005. In February or March of 2006 I had another surgery called an enteric conversion. The pancreas was taken out, disconnected from the bladder, everything cleaned out and put back in and reconnected to the colon, lower bowel or intestine (can’t remember the exact anatomy name). That was a tougher surgery than the original transplant. The other difficult thing that first year were the numerous labs and changes in immune suppression meds/doses and antibiotic & antiviral medications that are common early on post transplant. It took a lot of trial (and error) to figure out the right combination. Regarding anemia, it wasn’t concluded then that it was due to the pancreas transplant & immune suppression. I still have anemia that is thought to mainly be due to my CKD (chronic kidney disease). My doctors monitor that and treat as they feel necessary.
I am interested in your kidney transplant story. I have been told by my nephrologist that I will at some point need dialysis &/or kidney transplant. The thought of dialysis bothers me. Transplant does not. I have gone through the pre-transplant evaluation and been approved & accepted for kidney transplant. I got listed on UNOS through Mayo in Rochester. I have been looking for a living donor in the hopes of getting a preemptive transplant. My listing was changed to inactive because I am too healthy for transplant at this time! My GFR has bounced from 14 – 42 over the past 5 years and is currently 30. That is more of my story. Please tell me about yours.

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Replies to "@hello1234 after 16 years some things about the pancreas transplant are hard to remember and some..."

Hi @cehunt57 😊 It sounds like you really went through a lot that first year! (Especially having to have a second surgery so soon after the first surgery). It's probably a good thing that 16 years later, some of the experience is a blur. All is well that ends well, but when you are going through the trials and tribulations it doesn't feel that great.
My kidney transplant story started when I was a little girl. I had an infection that damaged my kidneys and began my lifetime scarring. My childhood nephrologist told me when I was nine years old that when I was a fifty year old woman I would need a kidney transplant. Well, fast forward…..at 60 years old I needed a transplant. My MIRACLE occurred in July 2020 (during the pandemic). I received a call at 2am from Mayo that they had a match! I thought I was DREAMING. When I arrived at the hospital I had a covid test, my cross match test, all of the other prep tests, and by 2pm I had my new kidney! I still can not believe how blessed I am. I drive my mother to kidney dialysis three times a week and she is there for three hours. Dialysis of course is a lifesaver and she is too old to qualify for a transplant. Dialysis takes a lot out of her so I am very aware of what a gift this transplant is for me.
My first year also had the challenges of trying to get the meds right. Neupogen shots to treat neutropenia and leukopenia, elevated liver enzymes. At the 8 month, I had CMV. My donor was CMV positive and I was CMV negative. After 6 weeks of Valcyte and lowered suppression, the CMV resolved. Since that time, my monthly labs have been pretty reliable and stable… It's WONDERFUL! I highly recommend a kidney transplant at Mayo Clinic. They are an AMAZING team. I tell everyone that the world would be a magical place if everything and everyone could be like the Mayo Clinic. Excellent and Caring. Like you always say, this is my personal miracle story! Love to you