If you and the transplant team decide that transplantation is the best treatment for you, you will be listed with the United Network for Organ Sharing (UNOS). UNOS administers and maintains the computerized national organ transplant waiting list. You will join a list of people waiting for a pancreas donation from a deceased donor.
The New England Organ Bank (NEOB) is the local (regional) organ procurement organization (OPO) for Beth Israel Deaconess Medical Center and the rest of New England, and coordinates sharing organs through UNOS. Staff at NEOB will enter your medical information into a computer and will notify our transplant team
when an organ becomes available based on your waiting time on the list, blood type and size match.
There is no guarantee with a deceased donor pancreas will become available. It could be months or years. The average waiting time in New England for a combined kidney and pancreas from a deceased donor is about 3 to 5 years, and the waiting time for a deceased donor pancreas alone is about 1 to 2 years. The waiting time is longer for patients with blood type O or B, and shorter for patients with blood type A or AB.
For more about wait time, and other statistics, visit the Transplant Institute outcome and volume data section on our Web site. We measure transplant volume by organ type, waiting time for a transplant, one-year survival rate by organ type, and quality of life before and after the transplant.
The Scientific Registry of Transplant Recipients also publishes center-specific reports with a wide range of useful information about transplant programs operating in the United States. The information includes many features of the BIDMC transplant program, such as the number of transplants performed in recent years, waiting time and
waitlist outcomes, and the post-transplant experience of our patients. The statistics allow comparisons to national averages, as well as to the experience for similar patients at other centers in the country. The waitlist report is based on BIDMC data for patients transplanted within the last five years.
UNOS requires that transplant programs provide a telephone number so that patients can contact UNOS if they have grievances or concerns about any aspect of their transplant care. We are pleased to provide this number, which is in keeping with Beth Israel Deaconess Medical Center's focus on transparency, and our commitment to providing high quality care to the patients and families we are privileged to serve. You can reach UNOS toll free at 888-894-6361 or directly on their page.
In Close Touch
While you are waiting for a pancreas to become available, you will visit the Transplant Institute every 3 to 6 months, or sometimes more often, so we can monitor your physical and emotional well-being. As always, we encourage you to invite a loved one to these appointments.
Routine Blood Tests
Once you are on the pancreas transplant list, you are required to submit monthly blood samples so that recent samples are always available for crossmatching, should a donor become available.
During your visits to the Transplant Institute, our social worker and psychologist will monitor your emotional well-being very closely. We know that behavioral health issues, such as depression and anxiety, can impact quality of life as well as survival after transplantation. A positive outlook is critical for successful surgery, recovery and overall good
Identify a Health Care Proxy
After you are accepted as an organ transplant recipient, you should select a health care proxy if you have not already done so.
In Massachusetts, you can name a person to help you make decisions about your health care if your doctor determines you are unable to express your own wishes. The person is called a health care proxy (or a health care agent). Having a health care proxy ensures that you will receive care that respects your wishes and values.
Even if you have a living will, you should also have a health care proxy. Only a health care proxy is formally recognized by Massachusetts law. Generally, a living will details a person's preferences about the use of life-sustaining medical treatments in the event of terminal illness. But a living will does not anticipate all of the complex medical choices that you
may face. Nor does a living will identify a person to speak on your behalf.
Also a health care proxy, unlike a living will, is not limited to situations of terminal illness. It enables you to designate someone who can communicate your values and preferences, and who will make sure caregivers follow your wishes.
Please ask your transplant team if you need a copy of the Massachusetts Health Care Proxy form.
Update Your Insurance
We can help you review your insurance policy to be sure it covers the costs of transplant care (including doctor visits, hospital stays, medications and medical tests).
As your treatment progresses, be sure to keep your insurance up-to-date so all of your information is current and accurate. Our social workers and financial coordinator will help you throughout this process.