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.
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
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 the web at
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.