Frequently Asked Questions about Pancreas Transplants

Am I a good candidate for a pancreas transplant?

You will need a thorough evaluation by the Transplant Institute staff, in consultation with referring physicians, to determine if transplantation is the best treatment option. Being a good candidate for transplant depends upon your physical health, emotional well-being, and ability to manage medication and care plans.

People with type 1 diabetes (inability to produce insulin), chronic pancreatitis or traumatic loss of pancreas may be candidates for a pancreas transplant. However, those with type 2 diabetes, where the body is unable to use the insulin it produces, generally do not benefit from a pancreas transplant.

How will a pancreas transplant benefit me?

One of the biggest benefits to a pancreas transplant for people with type 1 diabetes is lifestyle improvement. You will no longer need insulin injections, and you can enjoy a regular diet. Depending on your health before the transplant, you are also likely to experience greater independence and activity. Protection from kidney damage is the other significant benefit because the new pancreas will help prevent high blood sugar from damaging your body.

How soon after the pancreas transplant can I stop taking insulin?

Following a successful pancreas transplant, your new organ will begin making insulin right away. Initially some hospitalized patients may need to take low levels of insulin so as not to stress the newly transplanted donor pancreas. However, by the time most people are ready to go home, they are no longer taking insulin and they are able to enjoy a regular diet.

I have just been diagnosed with type 1 diabetes. Will a pancreas transplant help reduce my risk of vascular disease, retinopathy, and other health concerns brought on by diabetes?

Yes, a pancreas transplant will help reduce your risk of vascular disease, but it will not reverse any vascular disease that is present at the time of your transplant. It will prevent progression of retinopathy (a degenerative disease of the retina) and in some cases may reverse already established symptoms of this eye disease. A pancreas transplant will also improve peripheral neuropathy, although strict sugar control will also reverse this condition. With peripheral neuropathy, injury to the peripheral nerves, which carry signals between the central nervous system (spinal column and brain) and the internal organs, muscles and skin, can produce tingling, pain and debilitation.

I have a mild case of diabetes that is easily controlled. Am I eligible for a pancreas transplant?

A pancreas transplant is generally not for patients who have a mild case of type 1 diabetes that responds well to insulin therapy and certain diet restrictions. Some people consider transplant because they do not want to deal with certain lifestyle issues: limitations in diet, monitoring blood levels or needing three and four needle shots a day.

Other patients consider pancreas transplant because they have "brittle" diabetes, with very severe and sudden symptoms and complications from type 1 diabetes. These are people who have dangerous hypoglycemic unawareness. They pass out frequently because they are completely unaware that their blood sugar is getting low. Having one of these episodes while driving a car or sleeping can be life threatening. Apart from regulating blood sugar, a new pancreas for these patients may protect against kidney disease and other long-term complications of diabetes. Some patients with diabetes, who have already received a donor kidney, consider pancreas transplantation to protect their new kidney from health complications from diabetes.

What are the benefits of pancreas after kidney (PAK) transplantation?

For certain patients with type 1 diabetes, research shows that pancreas after kidney (PAK) transplantation helps improve blood sugar control without the need for insulin injections; improve the longevity of the kidney transplant; prevent recurrent kidney disease, brought on by diabetes, in the transplanted kidney; stabilize, and possibly reverse, a number of diabetes-related conditions such as kidney disease, nerve dysfunction and eye disease in some patients; and improve the overall quality of life.

How do I get a pancreas?

Patients who need a pancreas transplant are listed with the United Network for Organ Sharing (UNOS). UNOS administers and maintains the national organ transplant waiting list.

The New England Organ Bank (NEOB) is the local (regional) procurement organization for Beth Israel Deaconess Medical Center, and shares 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 other factors.

All organ procurement organizations and Transplant Institutes belong to UNOS. The NEOB operates according to policies set by UNOS, which is supervised by the federal government. Donor pancreases from deceased individuals are a precious national resource. The NEOB helps ensure equal access to all patients who need a pancreas for transplant by balancing the needs of patients who have waited a long time with the goal of transplanting well-matched pancreases. It is a complex process. Please talk to the Transplant Institute team if you have questions.

How long will I wait on the list?

There is no guarantee when a deceased donor pancreas will become available. It could be months or years. The average waiting time for a deceased donor pancreas in New England is between 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.

If you need a simultaneous pancreas/kidney transplant, from the same deceased donor, the wait time could be from 3 to 5 years. For this reason, we strongly advise patients to consider talking to family members, friends and others about living kidney donation followed by a deceased donor pancreas transplant.

Patients who have a living kidney donor may be able to avoid dialysis, or may spend less time on dialysis than if they had to wait for a deceased donor kidney. This has a number of health benefits for the transplant patient.

What medication must I take?

You must always take anti-rejection medications for as long as you have a functioning transplant. You will also need medications to prevent infection for a short time after your transplant. Additionally, you may need at some point in time medications to control blood pressure and prevent fluid retention.

You are responsible for managing your own medication schedule, as determined by the Transplant Institute team. You should never stop taking your medication or change the dose without approval from the transplant team, even if you experience unpleasant side effects. Tolerating some side effects temporarily may be necessary in order to prevent organ rejection. Tell your transplant team about any side effects that bother you. Your doctor may be able to adjust your medication.

What is the success rate for pancreas transplantation?

Pancreas transplant is successful in about 90 percent of patients who no longer have to take insulin injections within the first year following the surgery. After the first year, more than two-thirds of pancreas transplant recipients are still off insulin. The rate of organ function is very high, with a half-life of about 10 years. In other words, after 10 years, half of the transplanted pancreases are still working, which in terms of organ transplants is very good. Those that are still working typically go on to work for many more years. Surgeons are hopeful that this success rate will climb even higher in the future because of ongoing improvements in medication that support the functioning of the transplanted pancreas.

What if I reject the new pancreas?

Rejection is a signal that the patient's immune system has identified the new pancreas as foreign tissue and is trying to get rid of it. Preventing rejection with immune-suppressing medication is the first priority. The most common sign of rejection is change in pancreas function (an elevation of pancreas enzymes and/or glucose levels), as measured by a blood test. If the rejection episode is verified through blood work, biopsy and ultrasound, then the transplant team will increase the amount of anti-rejection medication or prescribe a different combination of anti-rejection drug therapy. Using medicine, we can successfully reverse most rejection episodes, if we detect it early enough. However, if the episode is severe, it may shorten the overall life span of the new pancreas.

How often will I have to go into the Transplant Institute after my transplant?

For the first three to six months after your transplant, you will have frequent follow-up visits with the transplant team and frequent laboratory tests. Gradually, however, you will see the transplant team less often. At this stage, you can look forward to having more time for yourself and your activities. You will become even more responsible for maintaining your own health.

As you begin to see the transplant team less often, many of your healthcare visits will be to your primary care physician and/or nephrologist, diabetologist and other specialists as needed. Always tell your healthcare providers that you have had a transplant, so if you do become ill, they can determine whether your symptoms are, or are not, related to your transplant. We recommend you keep a list of your current medications, as well as any drug allergies, with you at all times.

Do I have to follow a special diet after a pancreas transplant?

Because of the medication you must take, transplant patients are more likely to be affected by germs that may be on or in foods. You should wash all fruits and vegetables thoroughly before eating and avoid raw or undercooked meat, poultry, fish, sushi, raw shellfish and raw eggs in any form (including cookie dough and eggnog). Also, you cannot have grapefruit or any juices or beverages containing grapefruit because they will interfere with your medications.

Because you feel better with your new organ, your diet will be less restricted. Also, some medicines may increase appetite. Therefore, it is very important for you to follow a healthy diet to avoid gaining too much weight. The transplant team works with each patient to develop an individualized diet plan, taking into consideration special needs and restrictions.

Can I exercise?

Yes! It will take time to regain strength and endurance after a transplant, but eventually you can resume normal activity. Walking and stair climbing are excellent exercises for maintaining muscle tone and strength. You should consider walking 5 to 10 minutes a day when you first arrive home following surgery and then slowly increase the time you walk each week. Do not begin strenuous exercises, such as contact sports, jogging, tennis and weightlifting, for at least two months after the operation. It is normal to tire easily so you should rest when tired.

Are there any restrictions I must follow?

You should not smoke after transplant and every attempt to quit prior to the transplant is crucial to extend your life and the life of the new pancreas. The transplant team will let you know when you can begin to drive again, return to work or school, and travel. You can decide when to resume sexual activity depending upon how you feel. Postoperative discomfort usually does not interrupt sexual activity for more than a few weeks.

How do I pay for a transplant?

The financial coordinator on the transplant team, along with the social worker, will help you map out a financial plan to cover costs associated with transplant care, surgery and medication. Patients typically finance costs associated with their transplant by combining more than one financial resource. There are several options for those who do not have any type of health coverage, and there are policies and laws designed to help transplant patients with special financial needs. The Transplant Institute's social worker and financial counselor help develop a workable plan for each patient.

What are my out-of-pocket costs after the transplant?

Out-of-pocket costs following a transplant are highly variable, based on whether you have insurance or whether you are eligible for Medicare or Medicaid coverage. We understand that finances are a major concern for patients, and good planning will help to reduce this stress. Your financial counselor will review your own unique situation, and help you on an individual basis address your financial concerns and available resources. Together we can help you manage the financial impact of your illness, transplant surgery and long-term recovery.

Whom do I call for more information?

For more information about the Transplant Institute at Beth Israel Deaconess Medical Center, please call 617-632-9700.

Additional links for frequently asked questions:

United Network for Organ Sharing
www.UNOS.org

New England Organ Bank
www.NEOB.org

The Organ Procurement and Transplantation Network
http://optn.transplant.hrsa.gov/