Looking for others who have had a pancreas transplant

Hi @tbingheim, welcome to Mayo Clinic Connect. We have several members who have had a pancreas transplant, have considered one or are on the waiting list. To better connect you with others like you, may I ask what leads you to inquire about pancreatic transplant?

i have had diabetes for about 15years now and been on a few pumps. I struggle with Gastroperisis and my eyes are getting pretty bad. im 60years old and running out of places to place my pump and just tired of struggling. Dr says i quality so i was just getting other opinions on procedure.

@tbingheim, Allow me to bring @cehunt57 @linnea84 and @2011panc into this discussion as they have experience with pancreatic transplant.

I believe there is a typo in your last message and that you meant to say that your doctor says that you qualify for a transplant. That's the first step. Have you been referred to a transplant center? What questions do you have?

@tbingheim I had a pancreas only transplant at the Methodist Hospital, Mayo, Rochester, MN, January, 2011. At that time I had been a Type I, difficult to control diabetic for 35 years and I had been mentally and emotionally ready for a transplant for at least a decade.

*Graphic Content Follows*

If you are interested in a transplant, the first thing to do is ask your primary physician to refer you for a transplant evaluation. My evaluation took up most of a week, with additional tests and consults being added throughout the process. We also took advantage of their "checker" system. That meant going to scheduled appointments early (during breaks in appointments) to get appointments completed earlier. I was quite ill at the time and found the appointments and schedule daunting, even while I was grateful and hopeful for a transplant.

You will need a caregiver to help you post transplant. I highly recommend checking out the Transplant House, which started as a house donated by a wealthy patron for use by transplant patients and their caregivers. It has grown to two houses that provide a private room and bath, and communal rooms for cooking, dining, laundry, watching TV, etc. Last time we were there they also had a room set aside for Lab draws and collections. The thing we appreciate the most about the Transplant House is the stringent measures they take to keep everyone safe during their recoveries/treatments.

Just as every diabetic is different, every transplant experience is different. Mine was difficult and lengthy. Despite that I am still grateful every day that I went through it. You will spend some post-op time in the hospital, and you will be on multiple medications that may change daily for a number of weeks. Transplant medications include immunosuppressants that you will have to take for life. I still take three. Immediately following the surgery they told me to use a weekly planner, which was extremely helpful. Blood was drawn and medications were adjusted quite often the first few weeks. I quickly learned to write everything down and fill the planner every evening for the next day, because the medications were changed so often as my body adjusted to them and healed from the surgery. In addition to the 3 transplant medications I still take, I also had at least 4 other medications that were tapered off over time.

It is a lengthy surgery, as there are numerous vessels involved with the pancreas. A couple things I had not thought about: the old "native" pancreas is left as is and the new pancreas attached in front under the ribs (at least mine was); and the surgical scar runs "stem to stern" as the surgeon put it. My scar runs from just below my breastbone to my pubis.

Many transplant patients have kept a journal of their experience and urged new transplants to do the same. You will have to decide for yourself about that. For myself, my caregiver did not do well with that and there is much I do not remember, but I am okay with what I have been able to reconstruct.

I hope you find this helpful and I am certainly willing to share any other aspects of my experience you may have a question about Just ask. Blessings to you.

@tbingheim, I am a transplant recipient (not pancreas) and I would urge you to follow up with your doctor for a referral to the pancreas transplant specialist. You would be able to learn about the process and what to expect in your situation.
At my 1st appointment with my transplant center. I learned enough information about my condition and the transplant process that I knew that I wanted to proceed forward to schedule my evaluation so I could be placed on the organ transplant waiting list.

What is holding you back, or causing you to hesitate?

@tbingheim I’m Cheryl and had a pancreas transplant in 2005 when I was 48 years old. I think my story or history is available in my profile. It is good that you are getting information about this. I agree with everything that @2011panc and @rosemarya posted. Once you know that you want to pursue this the place to start is with the evaluation. Another consideration is to make sure that the center you choose will provide ongoing support and follow up after the transplant. Diabetes is one of the top causes of chronic kidney disease. Ask your Dr. if the possibility of kidney transplant also needs to be addressed during the evaluation. As has already been stated you will need someone to act as a caregiver for you. The evaluation is rigorous. That is the time to also discuss your complications such as gastroparesis and vision problems to find out what the impact of pancreas transplant may be. After the transplant there are lots of meds, labs and ongoing adjustments to get accustomed to. Learn all you can before, during and then keep on learning after. It is worth it.