@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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@hello1234 My orthopedic surgeon wants me to take amoxicillin forever before dental work but my transplant department did not think it was necessary! So I do take it before dental work, 4 amoxicillin an hour before.

I was told by a nurse on my transplant team that you really have an hour leeway before and after your regular time on your immunosuppressants so as @athenalee commented you could do that a bit early and the other a bit late. You could also check with your transplant team to find out if there would be a problem if you took the antibiotic at the same time as your immunosuppressants.
JK

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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

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Wow. Quite the journey @hello1234! Thank you for sharing. I had my transplant at 61 and a month after you…an unnerving time to be in a hospital. But definitely a blessing!

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@athenalee we have so much in common!! 💃 One year post-transplant patients (during a global pandemic)… separated by only one month!! 😊 I forget…did you have your transplant at Mayo or did you have your transplant closer to home?

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Hi @contentandwell JK! 😊 Thanks so much for jumping in to help me! I hope all is well with you!
I called my transplant team and they told me I could take my immune suppression drugs and the 2,000mg amoxicillin at the same time, so that was good news… I think I am going to try to separate them by 30 minutes or so.
Do you have a hip replacement or knee replacement that needs amoxicillin before dental work? I forget which organ you had transplanted, did you have a liver or kidney transplant? Did you have your transplant first and then your orthopedic surgery?

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Yes, pandemic memories…being increasingly ill at the start of the pandemic, not being able to see my liver doctor, having my transplant team interviews delayed, then (fortunately!!) started via webinar, ending up in the emergency room multiple times (my support person made me strip in my garage and then walk up the stairs to shower immediately upon return due to Covid fears!), and in the hospital for one month and a week and no visitors…lots of stress upon stress! I kind of grew tired of people complaining they couldn’t go out to restaurants or movies!

Unfortunately no Mayo in my area. I went to Lahey, which is just outside Boston. My team was great. Two female surgeons. I think the follow up lacks the team approach of Mayo, however. Although, I’ve asked to see a rheumatologist at Lahey to help get a more coordinated treatment plan, so I’m hopeful.

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@hello1234 I have had both knees replaced, so far my hips are not arthritic, they just have bursitis and one has sciatica. The first orthopedic surgeon did not suggest lifetime amoxicillin but the second one did. He is really great but he is cautious. I presume he must at some point had a patient affected by dental work beyond the typical two years when amoxicillin is usually advised.

I had my liver transplanted. I had my first knee replacement before my liver showed problems. I was planning to have the second one done when I was not yet diagnosed with cirrhosis but having problems, one being low platelets. I was put on prednisone for two weeks by my hematologist to help get my platelet count up and it seemed to help but on the morning of the surgery the count was not good enough for the surgeon to operate so it was delayed. I was outside of the OR, all set to go in for the surgery, intravenous in my arm and all, when the surgeon came out and told me the bad news.

It ended up being a long delay because that was in February of 2014 and my transplant was in September 2016. I could have had the TKR 6months after my transplant but I couldn't bear the thought of being in the hospital again so soon so I waited a full year.
JK

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@hello1234, It’s always nerve wracking checking the lab test results and such a huge relief when it came out good. I’ll ask UCLA what their protocol is on kidney biopsy. I will keep you updated after my appointment with UCLA tomorrow.

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Hi @contentandwell 😊 So great to hear from you! …. I see that you mentioned sciatica in one hip. I have the same in my right hip. Have you found any relief in certain exercises or any other remedy? My sciatica comes and goes for apparently no reason. I can't determine if it's something I am doing to bring it on?

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