I have had diabetes for 20 yrs, and my doctors have NEVER mentioned this. I’m jsut starting to learn about it and do my research… can someone please tell me more about this? the pro’s and cons!!!
My understanding is that they only do pancreas transplants on people who need kidneys too, because if you get the transplant you need to take the anti-rejection medications for the rest of your life.
So it is a last ditch kind of treatment. WIth the pumps and CGMS and better understanding we have about diet (i.e. carbs), blood sugar, and blood pressure control, there should be a lot less people losing kidneys.
Deb Butterfield (author of the book “Showdown with Diabetes”) was a fierce advocate of pancreas transplantation. You should know that while it is not without risks (it is major surgery, which has risks by itself) and requires ongoing immunosuppression which some doctors feel is more risky than continued insulin replacement, there are 3 major types of pancreas transplantation surgery: pancreas with kidney transplantation, pancreas after kidney transplantation, and finally pancreas transplantation alone. In general, they will consider pancreas transplantation alone if you have severe glycemic instability and/or severe hypoglycemia unawareness.
You may wish to consult the following resources for some more information on this topic:
Diabetes Institute for Immunology and Transplantation at the University of Minnesota
The University of Minnesota is world-renowned as a pioneer of organ transplantation. This reputation lies at the heart of successful pancreas transplantation, an advanced treatment for diabetes which was pioneered here in 1966. In 1994, the U of M Medical School capitalized upon its historic strengths in pancreas transplantation by establishing the Diabetes Institute for Immunology and Transplantation (DIIT) to pursue a cure for diabetes. David E.R. Sutherland, M.D., Ph.D., Head of the Transplantation Division and Professor of Surgery, was named Director of the DIIT. Bernhard J. Hering, M.D., was recruited from Germany to head islet transplantation and to serve as an Associate Professor of Surgery.
Information About Getting a Pancreas Transplant
Info on getting a pancreas transplant from the National Kidney Foundation.
International Pancreas and Islet Transplant Association
The International Pancreas and Islet Transplant Association is a scientific forum for the exchange and discussion of clinical and experimental results and experiences relevant to transplantation of insulin producing tissue in the treatment and cure of diabetes mellitus.
Pancreas Transplantation for the Treatment of Type 1 Diabetes Mellitus
Article published in the journal “Clinical Diabetes” by David E. R. Sutherland, MD, PhD, and Rainer W. G. Gruessner, MD, PhD of the Diabetes Institute for Immunology and Transplantation at the University of Minnesota on the option of pancreas transplantation to treat Type 1 diabetes.
Pancreatic Islet Transplantation
Article published in the journal “PLoS Medicine”, an open-access, peer-reviewed medical journal published monthly, online and in print, by the Public Library of Science (PLoS), a nonprofit organization.
United Network for Organ Sharing (UNOS)
The UNOS Organ Center, established in 1982 as the Kidney Center, celebrated 20 years of service on July 15, 2002. In 1984, as more organ types were being successfully transplanted and the sharing of lifesaving organs became more common, the name was changed to the Organ Center. Since its inception, the Organ Center has provided continuous, uninterrupted service to the transplant community. The UNOS Organ Center helps facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S.
The Needle And The Damage Done
Reporter Scott Bowles, who was diagnosed with Type 1 diabetes at age 14, chronicled his wait for a kidney-pancreas transplant in the pages of USA Today during 2000. On Jan. 12, 2000; his wait ended. Scott tells his story here (or in the book with the aforementioned title, ISBN: 0738846716).
Scott is correct. I hear many people talk about wanting a pancreas transplant, and just want to clairfy that it doesn’t necessarily mean you would not need external insulin.
Considering the fact that your immune system most likely caused you to lose pancreatic function in the first place, then you take immunosuppressants the rest of your life to keep your new pancreas, which increases your risk for cancer and a host of other harder to treat diseases. There is the Edmunton protocal for just islet transplantation which is being investigated but so far many people end up having to take external insulin again within 5 years.
Even for just an Islet cell transplant, it takes at least 2-3 pancreata to produce enough working cells (islets) for one human and there is a dire shortage of organ donors as it is in this nation. Insurance will not cover the transplant as they will life saving organs (heart, lung, liver). It’s true that if you need a kidney you can also request a pancreas. Records show that if you receive a kidney/ panc transplant, your quality of life skyrockets upwards and the rejection/failure factor is low.
The good news is that there is a new Pancreas committee working with the OPTN to form guidelines for pancreas/ islet transplants. You can find out what doctors and hospitals are on that committee here .
They are just forming but I’m very excited and have been paying close attention to what they are working on.
And yes, I work at UNOS www.unos.org
Wow! Thanks for posting all that info! Some day down the road I will most likely have a lung transplant, so i wonder if they could give me a pancreas at that time too. I had never thought of that before. I have time to research to my hearts content! Thank you!
As long as you’re on the UNOS registries for both, I’m not aware of any reason you couldn’t receive both … but (and its a big one), they are two separate surgeries and unlike kidney/pancreas transplants which can be done simultaneously, I have never heard of a simultaneous lung and pancreas transplant, but you might ask your surgical team about it!
Luckily that’s a ways down the road for me. Thanks!