Looking for other pancreas only transplant recipients

@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is nice to know others understand. Hypoglycemia unawareness is the worst, right? Thank God I’ve not had this much since the transplant. The blood sugars used to bounce from 20’s to 600’s and back with a double digit A1C until after transplant it was 5.3. I live in the twin cities metro area of MN. My transplant was done at U of MN. The pretransplant evaluation, education and transplant itself were fantastic but in the next 11 years I felt the follow up was less than desirable. Two years ago I felt like I was starting to decline & loose ground. I had a pretransplant evaluation at U of MN and at Mayo in Rochester. My insurance covered both. The two experiences were very different. I’ve chosen Mayo and plan to have a future kidney transplant there when that becomes necessary. My labs are done locally every 3 months. I found they became less frequent as post transplant time went on. My local team of providers sees me regularly, monitors everything and communicates well with Mayo. I go for an annual pretransplant review at Mayo. The U of MN team is no longer in contact with me. I appreciate your statements of faith. I am a believer as well and have added both of you to my prayers. My name is Cheryl.

@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !
Rosemary

@donnan, Hi and Welcome to Connect. I see that you have just recently joined us. I am a volunteer mentor (liver/kidney) and I want to invite you to take a look at any of our discussions and to join in at any time with any questions or comments. We are a group on individuals who support each other by sharing our transplant experiences to help and encourage others.
Donna, I understand your desire to connect with others who are 'related' by pancreas transplant. Please let me know if there is anything that I can assist you with. I would like to introduce you to @cehunt57 and @2011panc who have both received a pancreas transplant.
Rosemary

thank you for the connect i'm wanting to get a pancreas transplant. I have never had kidney troubles until about two months ago i been feeling pain but i started cranberry juice three times a week and a lot I mean a lot of water the pain stopped and the blood work shows no issues. But the sugar level is a whole other ball game it will be 150 then i'm sitting watching TV and it will shoot up to 600 i'm on the pump but it bounces so much.

@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.

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

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

I add my welcome, Pam. Did you see this story about a patient of Dr. Jarmi's?
- Pancreas transplant to cure diabetes https://sharing.mayoclinic.org/2021/11/19/pancreas-transplant-to-cure-diabetes/

When do you go for your evaluation?