SPK (simultaneous pancreas and kidney) transplants
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.
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!
@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 ?
Yes rosemary I am listed for kidney only at 2 transplant centers. I am being referred to mayo in Jacksonville for kidney and pancreas.
@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
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.
@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.
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.
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!
@2011panc I’m reviewing this discussion from start to present. All I can say is “me too”! How are you doing now?
@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?