Looking for other pancreas only transplant recipients

Posted by Donna N @donnan, May 29, 2018

Had my transplant almost 2 years ago. I would like to connect with others.

Interested in more discussions like this? Go to the Transplants group.

@cehunt57

@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

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@pamherman

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

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Wow, bite not bight, alarm is real🤦🏻‍♀️

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@pamherman

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

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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?

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@colleenyoung

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?

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Hi, yes I did and I also saw his video. I was so excited! I go Feb. 11 for appointments. I looked at my schedule there and was so excited he is my first appointment!! I live in Va Beach and Chesapeake so I’m far. I’m leaving on the 9th, I have 2 phone appointments on the 10th and Clinic on the 11th , the 14th and 15th. Then come home and have 3 days of telehealth. I’ve been to so many places that just don’t get it. I feel really good about Mayo and my Kidney donor lives in Florida. I am not sure if my kidney numbers are real low or not because it’s been a month and they got a little better. So probably Pancreas first then Kidney if it goes way down again. I can’t wait!

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@pamherman

Hi, yes I did and I also saw his video. I was so excited! I go Feb. 11 for appointments. I looked at my schedule there and was so excited he is my first appointment!! I live in Va Beach and Chesapeake so I’m far. I’m leaving on the 9th, I have 2 phone appointments on the 10th and Clinic on the 11th , the 14th and 15th. Then come home and have 3 days of telehealth. I’ve been to so many places that just don’t get it. I feel really good about Mayo and my Kidney donor lives in Florida. I am not sure if my kidney numbers are real low or not because it’s been a month and they got a little better. So probably Pancreas first then Kidney if it goes way down again. I can’t wait!

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Pam, your excitement comes right through the computer screen 🙂 I hope you realize that we'll want to hear about your appointment during and after, LOL. Until then, feel free to keep asking questions as you prepare for your visit.

If this is your first trip to Mayo Clinic in Jacksonville, Florida, you may appreciate reading the posts in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

There are discussions specific to the Florida campus as well as general discussions about Mayo Clinic.

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@colleenyoung

Pam, your excitement comes right through the computer screen 🙂 I hope you realize that we'll want to hear about your appointment during and after, LOL. Until then, feel free to keep asking questions as you prepare for your visit.

If this is your first trip to Mayo Clinic in Jacksonville, Florida, you may appreciate reading the posts in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

There are discussions specific to the Florida campus as well as general discussions about Mayo Clinic.

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Cool, I’ll do that. It’s meant to be, I should write a book! Thank you so much.

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