If you and the transplant team decide that transplantation is the best treatment for you, a living donor is often the best option. If this is not an immediate possibility 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 kidney 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.
The wait for a deceased kidney is longer than the wait for a living donor kidney, and there is no guarantee when a deceased kidney will become available. It could be months or years. The average waiting time for a deceased donor kidney in New England is about four 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 Scientific Registry of Transplant Recipients. The SRTR 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.
In Close Touch
While you are waiting for an organ to become available, you will visit the Transplant Institute every three to six months, or sometimes more often, so we can monitor your physical and emotional well-being. Patients who are listed for ECD (extended criteria donor) kidneys return for clinic appointments every three months. Those listed for standard criteria donors visit the clinic every six months.
As always, we encourage you to invite a loved one to these appointments.
Routine Blood Tests
Listed kidney transplant patients are only required to get blood work done in the Transplant Institute annually. Certain medical conditions may require more frequent testing. Also your local nephrologist and/or dialysis center will test your blood on a more regular basis.
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 health.
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.