SPK (simultaneous pancreas and kidney) transplants

Short history: Ten years ago, I was diagnosed as a Type II diabetic. Five years ago I was diagnosed with pancreatic cancer. In my Whipple procedure, the surgeon removed most of my pancreas. The pancreas was not reattached to my digestive system and I became a Type I diabetic. A rare reaction to the chemo gave me a disease that damaged my kidneys. For the last 4 years, I have had Stage 4/5 CKD. Last August, I asked Mayo Rochester about a pancreas/kidney transplant. The doctor told me that because of my size (6 feet 3 inches/230 pounds) that a transplanted pancreas would not produce enough insulin to cover my needs and I would still have to give myself insulin shots. He also said that internal scarring from my Whipple would make the pancreas transplant very difficult. Still working on a kidney transplant.

I was never in dialysis. I tried very hard to stay off from it! I was at 12% function at transplant. I am very close to both Rochester an Madison. I am in La Crosse WI. Is there a way I could give you my phone number? I love talking about my journey but with my retinopathy and my neuropathy, talking at length via messaging is rough!

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 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.

@jgloede9 I’m reviewing this discussion start to present. I had a pancreas alone transplant in 2005. After the transplant my retinopathy reversed. My peripheral neuropathy went away and my autonomic neuropathy (gastroparesis) improved. How are you now?

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.

@benlam11 To make your life easier before/during/after transplant, get yourself as healthy as possible. Stop tobacco and alcohol, eat a healthy and natural diet (cook things from their natural state), reduce caffeine and sodas, and get as fit as possible (walking or swimming daily are the best start). Begin practicing cleanliness: sanitize countertops before, during and after use; designate separate cutting boards for vegetables and meat; stop using wooden cutting boards for meat; wash hands well and often; get used to having and using sanitizers; reduce use of perfumes, air fresheners, etc. (that may be masking odors rather than cleaning them); review your live plant situation and reduce to minimal care house plants; review your pet situation and arrange for someone else to manage bathing, brushing and urine/feces; look for and address any mold issues anywhere in your house; and set a schedule for cleaning heat/air vents/covers.

Issues for transplanted organs should be provided by your doctors at the time of transplant. You will be informed of the points of mismatch (for example, my donor was +CMV and I was -CMV) and instructed if/how to manage them. You will also be instructed what symptoms to watch for and report.

I have experienced many unexpected issues following my transplant because, I believe, I was a brittle Type I long-term diabetic and all this underlying issues that had been attributed as secondary to diabetes were now jumping out of the cupboard and saying, "Me! Take care of me now!"

Since I have a pancreas only, I cannot address any issues with any other organs. I do understand that each organ has it's own issues and each person has their own individual experiences and expectations.

You have a healthy interest in your personal health. One thing I would suggest, if you are interested, is to begin journaling. Many people have found it helpful. You can expect lapses of memory throughout the process, as you will be given anesthesia and pain medications that may alter your memory functions. A journal that you keep, even in an altered state, can help you piece everything together later.

Primarily my advice (and what works for me) is to turn your will and your life over to God and trust that He will take care of things when you cannot. That underlying belief, faith and knowledge has always served me well and helped me calm myself and press on. Blessings to you and all your supporters.

Waiting for approval for liver transplant I really enjoyed your words of wisdom makes a lot of sense
Put it all in Gods hands

@mnjp0623, Welcome to Connect where members share their experiences to support others. I am happy that you have joined us and shared that you are approaching approval for a liver transplant.
I am a liver/kidney recipient in 2009 at Mayo Clinic Rochester. Are you already a patient at a transplant center? Have you been scheduled for an evaluation for approval to be placed on the UNOS waiting list? Or have you completed the evaluation process and are waiting for the final decision? What do you want to ask?

patient at Mayo clinic in phoennix/scottdale I went through the evaluation process waiting to go on UNOS list
How long did you have to wait for your transplant ? this is all new to me.