1. < Transplants

SPK (simultaneous pancreas and kidney) transplants

Posted by nikkispk @nikkispk, Apr 9, 2019

Hello! I am listed for SPK at MayoClinic in Jacksonville Florida. I have not seem anyone talking about any SPK or even pancreas only transplants. I know we are rare, but is anyone else out there?? Love to discuss the experience!

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

tasher3433 | @tasher3433 | Jul 19, 2020

Being proactive is terrific. To me, that means your frame of mind is shooting for the top and will be instrumental in recovery! Very best wishes!

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Rosemary, Volunteer Mentor | @rosemarya | Jul 19, 2020
In reply to @linnea84 "I have not heard anything yet. I'm being proactive and have scheduled a stress test and..." + (show)
@linnea84

I have not heard anything yet. I'm being proactive and have scheduled a stress test and echo so I can have them done. Just waiting to hear from mayo now. Hopefully won't be too long. Thanks for checking.

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@linnea84, I am confused. Are you saying that you are already listed for a kidney transplant at 2 other transplant centers?
Is your referred to Mayo JAX for a simultaneous kidney/pancreas transplant ?

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1 reply
linnea84 | @linnea84 | Jul 20, 2020
In reply to @rosemarya "@linnea84, I am confused. Are you saying that you are already listed for a kidney transplant..." + (show)
@rosemarya

@linnea84, I am confused. Are you saying that you are already listed for a kidney transplant at 2 other transplant centers?
Is your referred to Mayo JAX for a simultaneous kidney/pancreas transplant ?

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Yes rosemary I am listed for kidney only at 2 transplant centers. I am being referred to mayo in Jacksonville for kidney and pancreas.

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Rosemary, Volunteer Mentor | @rosemarya | Jul 20, 2020

@linnea84, I had my transplant (simultaneous liver and kidney) in 2009 at Mayo Rochester. The testing/evaluation process is an intense one, and before you make your own proactive aapproach to schedule your own tests, I suggest that you check with Mayo's transplant dept first. Those tests are part of evaluation, and Mayo will most likely be doing them.

If you want it, Here is contact information for you.
Mayo Clinic Transplant Center
4500 San Pablo Road
Jacksonville, FL 32224
Phone: 904-719-8095

https://www.mayoclinic.org/departments-centers/transplant-center/home/orc-20203891
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Cheryl, Volunteer Mentor | @cehunt57 | Jul 28, 2023

I had a pancreas only transplant in 2005. At that time my chronic kidney disease (CKD) was only mild - moderate and a kidney transplant was not recommended. Fast forward to 2016. My kidney function had decreased and my pancreas function was not as good as it once was. I went through pre-transplant evaluation this time for simultaneous pancreas kidney transplant. I was approved for kidney transplant but was told that pancreas transplant was not necessary. I’ve been looking for a living kidney donor ever since. Now 7 years later neither the pancreas or kidney function are great. I’m still interested in SPK but when I had a pre- transplant review this past March I was told that I’m too old. I’m 66 and apparently there is an arbitrary 65 cut off. I think my quest for SPK lost ground 2020 - 2023 during the worst of the pandemic years and I aged out! My point is transplants are a big deal. Multiple transplants even more so. Do whatever research you feel you need to and pick a transplant center you feel you can trust and will work with you as an individual. Take into account pre-transplant work up, the transplant itself and follow up. My transplant in 2005 was at a different center than what I’m working with now (Mayo). I heartily recommend Mayo (any of the main three) because I think it is advantageous to extend the network across the country. The stellar Mayo reputation precedes them.

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Rosemary, Volunteer Mentor | @rosemarya | Apr 3 6:18am

@mariancauwel, I want to invite you to this discussion. As a caregiver for your sdaughter who is waiting for a pancreas and kidney transplant, I can understand how long and lonely this waiting and wondering can be for you. And this is a great place to meet others and to learn from others who have already transplanted.

@mariancauwel, What can we do to help youj and your daughter? Is your daughter at home currently?

I'm tagging @tasher3433 and @cehunt57 to join us.

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mariancauwel | @mariancauwel | Apr 3 10:33am

I would find it to be just helpful to know others who have gone before, as I have questions I can go to. This is a silly question but, do you have a certain time you get together as a group on this site and then everyone one sits in, or is it totally individual? The waiting is ok, just want to be prepared for Marlo’s transition, she is the sweetest. Will her stomach hurt terribly for how long? Will she be comfortable in bed or couch, I know go slow with diet, fluid, soft, I just want to have right food on hand. Thank you for your help.

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Cheryl, Volunteer Mentor | @cehunt57 | Apr 3 11:22am
In reply to @rosemarya "@nikkispk, I want to welcome you to Mayo Connect. I am a simultaneous liver and kidney..." + (show)
@rosemarya

@nikkispk, I want to welcome you to Mayo Connect. I am a simultaneous liver and kidney recipient, I am happy to meet you. I would like to introduce you to cehunt57 and @2011panc who can tell you about pancreas transplant.

Here is a discussion that you will also find interesting. -Looking for other pancreas only transplant recipients.
https://connect.mayoclinic.org/discussion/looking-for-other-pancreas-only-transplant-recipients/?pg=1#chv4-comment-stream-header

Edit- @cehunt57, I wanted to tag you to this conversation. I just noticed that I didn't include the @ before your name.

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I’m late to this party as this discussion originated in 2019 and now it is 2024! I had a pancreas only transplant in 2005. At the time I only had mild to moderate chronic kidney disease (CKD) and a simultaneous pancreas kidney (SPK) transplant was NOT recommended. Now I have Stage 4 CKD and I wish I would have had a SPK back then. Hindsight is indeed 20 / 20!

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Cheryl, Volunteer Mentor | @cehunt57 | Apr 3 11:29am
In reply to @2011panc "@nikkispk I received a pancreas only transplant January 15, 2011, at Mayo Clinic Complex, St. Michaels..." + (show)
@2011panc

@nikkispk I received a pancreas only transplant January 15, 2011, at Mayo Clinic Complex, St. Michaels Hospital, in Rochester, MN. As I have come to understand, pancreas only is more rare than kidney/pancreas. There are several of us on Connect. According to UNOS, there have been 192 pancreas only and 839 pancreas/kidney transplants over the last 30 years. I do not know the outcome of the transplants. Mine is a Gift of God and has changed my life considerably.
Many people, including medical personnel, do not know that pancreas transplant is even possible. Now that I know this, I am not surprised that I have had such a hard time finding other pancreas transplant recipients. I am glad but hesitant to discuss my journey with you. I am glad to help in any way I can, and hesitant because I have many additional medical issues that has made my recovery and life quite challenging. I do not want you to expect that your journey will parallel mine and hope that yours is much less involved.
I was a long-term, brittle, Type I Diabetic that started insulin therapy in the dark ages when home sugar test were done by checking urine for the amount of sugar and injections were all long-acting, animal-derived insulin based on periodic testing at the doctor's office. We have come a long way. Before transplant my glycemic highs and lows were so unpredictable, frequent and intense that I had to carry injectable glucose recovery kits. I would have no symptoms until it was too late to help myself.
Please feel free to ask me anything and I will answer to the best of my ability. I have shared about my journey and you should be able to read any of my previous posts by entering @2011panc. I believe you can look forward to an exciting and life-changing event with many benefits for you future. Do you have any particular questions for me? Blessings to you.

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@2011panc I’m reviewing this discussion from start to present. All I can say is “me too”! How are you doing now?

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Cheryl, Volunteer Mentor | @cehunt57 | Apr 3 11:34am
In reply to @benlam11 "I have an evaluation scheduled in the Phoenix MAYO clinic next week for a Kidney/Pancreas/Liver transplant..." + (show)
@benlam11

I have an evaluation scheduled in the Phoenix MAYO clinic next week for a Kidney/Pancreas/Liver transplant evaluation. I'm a type 2 diabetic with a creatinine level of 3 and 17% of kidney function. My Las Vegas doctor estimated my MELD score at 25+. While I feel OK now (other than staying tired most days), I do not want to be literally at the end, especially since my numbers are on a downhill slide. If I'm approved I know I will be on medications the rest of my life (however I've been on something for 40 years anyways). Is there any ideas that would make my life easier before during and after the transplants? Any issues on transplanted organs to look for? I feel very comfortable with the MAYO doctors. Has anyone seen major unexpected outcomes?, especially since Liver transplants are not available in Nevada and many specialties of doctors do not exist here - so there will be many trips to the Mayo in Phoenix.

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@benlam11 I’m reviewing this discussion from start to present. Wow you were facing a triple header of a transplant! Did this happen? How are you doing now?

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