Living with a Pancreas Transplant
Once you leave the hospital, a new set of coordinators will be your main contact with the transplant team. They will teach you how to care for your general health and will answer most of your questions. The coordinators are involved in most aspects of your care and will put you in touch with staff in other areas if needed.
After the Hospital
After you go home from the hospital, your responsibilities will be to take all of your medications as they are prescribed and to keep your clinic appointments. You will be examined and have your blood tested twice each week for the first month. Blood testing will occur at the UF Health Shands Transplant Center or at your local lab.
The follow-up arrangements will be made before you go home from the hospital. Your doctor will discuss any changes in your medications and follow-up care at each visit. After the first several months, it will not be necessary for blood tests and doctor visits to be so frequent. However, you will always need to have your pancreas function and medications checked as directed by your doctor.
Depending on the type of work you do and if you are free of major complications, you should be able to return to work in six to eight weeks. Your doctor will discuss this issue with you at your clinic visit.
Your first UF Health Shands Transplant Center appointment will be scheduled before you leave the hospital. For the first few weeks you will be followed twice weekly. How often you need to return to the UF Health Shands Transplant Center will depend on how well you are doing. In some cases, your care will be shared between our medical staff and your local doctor. In any case, we expect you to return to the UF Health Shands Transplant Center every six months. We will work with you and your local doctor to monitor your blood tests and adjust your medications as needed.
What to Expect
You will be given instructions about having your blood drawn and clinic visits before you leave the hospital. The medical staff will see you in the UF Health Shands Transplant Center. Any medical problems you might be having will be reviewed and a short physical will be done. Your lab results will be reviewed with you. You may take your morning medications after your blood is drawn. If your prograf or cyclosporine levels are not available while you are in clinic, the clinic staff will call you later in the day if your dosage needs to be adjusted. Be prepared to spend several hours in the UF Health Shands Transplant Center on the day of your appointment.
What to Bring
Please bring your transplant handbook and medication list every time you come to the UF Health Shands Transplant Center or visit your local doctor. You should get in the habit of writing down your weight, blood pressure and important lab values. Remember to make changes on your medication sheet when your dosages are adjusted.
Bring your morning dose of prograf or cyclosporine with you. Do not take your prograf or cyclosporine until after your blood is drawn. The doctor in clinic will let you know late morning or early afternoon what dose of prograf or cyclosporine to begin taking if your dosage needs to be changed. You may take the rest of your scheduled medications before clinic, unless you are told otherwise.
Your transplant team will continue your pancreas care. At this point, though, the most important member of the team is you! Without your active support, the team's best efforts cannot succeed. As the lifetime caretaker of your new pancreas, you will need to do the following:
- Make sure you have healthy daily habits that include a good diet and regular exercise
- Follow your medication schedule
- Check your weight, temperature, blood pressure and pulse periodically
- Talk to your transplant team regularly
- Keep to your schedule for lab tests and check-ups
- Make sure all of your doctors know about your medications and care
Now that you have a working pancreas, you will need to make changes in your diet. A dietitian is available to meet with you before discharge. Increase in appetite is a side effect of prednisone. To avoid weight gain, avoid high-fat and high sugar-containing foods.
Prednisone may also cause your body to hold onto salt and water. While taking large doses of steroids, it is important to limit foods with high salt, sugar or fat.
Foods to Limit
Limit your intake of the following foods:
- Processed meats such as ham, bacon, sausage, luncheon meats, hot dogs, sardines, smoked meats, ham hocks and fat-back.
- Processed foods such as canned meats or soups, TV dinners, pre-packaged meals (Hamburger Helper, etc.)
- Foods soaked in brine such as olives, pickles and relish.
- Snack foods such as salted nuts, popcorn, potato chips and pretzels.
- Desserts/pastries such as pies, cookies, cakes, candy bars and ice cream
- High-fat foods such as butter, bacon drippings, ham hocks, lard, salt pork, meat fat and drippings, creams, coconut, most cheeses, snack products such as deep-fried chips
Elevated cholesterol levels may occur after transplant due to immunosuppressant therapy.
Control your cholesterol level by following these suggestions:
- Limit your intake of high-fat meats and organ meats such as liver
- Remove all visible fat from all meats
- Remove skin from chicken or turkey before cooking
- Broil or grilling meats
- Limit your intake of egg yolks to three per week
- Use low-fat cheese and milk products. You may use egg substitutes.
- Use vegetable oil instead of shortening or lard and use margarine instead of butter
- Read labels and avoid foods containing high amounts of saturated fats or saturated oils (such as palm oil and coconut oil)
Prednisone breaks down the body's protein stores and may lead to muscle wasting. Once your pancreas is working and while you are on high doses of prednisone, your body will need extra protein.
You will need to eat plenty of "high biological value" protein such as lean meat, poultry, fish and low-fat dairy products. When you reach maintenance levels of your prednisone dose (10-15 mg/day), you may decrease your protein intake.
What You Need to Know About Medications
Rejection can occur at any time after your transplant. Never let yourself run out of or take less than the prescribed amount of medicine or you will cause your body to reject the pancreas.
You will need a one month supply of your discharge medicines before you leave the hospital. The outpatient pharmacy will expect you to pay whatever your insurance coverage will not pay when you pick up your medicines before discharge. The dosages and reasons for your different medicines will be reviewed with you before you leave the hospital. It is very important that you take all your medicines as directed.
Remember prednisone, CellCept, prograf and cyclosporine are needed to keep your body from rejecting the new pancreas. Know your medications, dosages and the time of day you take them. Do not take any over-the-counter medications without checking with your transplant team.
Changes in your medications and medication dosages will continue after you leave the hospital. Remember to bring your Prograf or Cyclosporine with you. Do not take your prograf or cyclosporine on the morning of clinic until after your blood has been drawn.
You are responsible for taking the medications that have been prescribed for you. You will be instructed to learn the following:
- The name and purpose of each medication
- When to take each medication
- How long to take each medication
- Main side effects of each medication
- What to do if you forget to take a dose
- When to order more medication so you do not run out
- How to get your medication
- What you should avoid (such as drinking alcohol or driving) while you are taking medication
At home you will continue taking the medications you began taking in the hospital after your surgery. Your immune system recognizes your new pancreas as foreign and will try to reject it. Therefore, your immune system must be controlled with antirejection medications. You will have to take the transplant medications for the rest of your transplanted organ's life.
Never stop taking your medications or change the dosage without your transplant team's approval. There is always the risk of your losing the new pancreas.
Before Taking Medication
Ask a transplant nurse, coordinator or pharmacist to help you choose the best times to take your medications. Try to take each medication at the same time every day. Follow a written schedule. Do not crush or cut a tablet unless you are advised to do so.
Notify your transplant coordinator if you:
- Cannot take your medications by mouth because of illness
- Have a long illness (nausea, vomiting or diarrhea for 24 hours)
- Think the directions on the label may be different from what you were told
- Have trouble removing child-resistant caps
- Have a reason to take aspirin, Advil (ibuprofen), other pain relievers, cold remedies or diet pills
- Feel you are having a reaction to your medications
- Have had a change in health or eating habits
- Have a new prescription from your local doctor or a change in a current prescription
- Experience any unusual symptoms or side effects, since they may be related to the medications you are taking
Rejection occurs when your body "sees" that the new pancreas is not like your own body tissues. The body responds by sending special cells to attack the new pancreas. This attack can cause the donated pancreas to fail. Just as the body recognizes a virus as being unfamiliar and develops antibodies or killer cells to get rid of it, the body can form cells to try to get rid of the new pancreas. Rejection is normal. It is the body's way of trying to protect itself.
Keep in mind that you may undergo a rejection without having any symptoms. This is one of the reasons that it is important for you to be followed regularly. Rejection is best treated if found early. It is important that you keep your UF Health Shands Transplant Center appointments as scheduled.
Three medications can help the body fight off rejection: CellCept, prednisone and prograf. Other anti-rejection drugs such as cyclosporine and OKT-3 may also be used.
These medications help your body accept the new pancreas. You will have to take these medications for as long as your new pancreas is working. You may experience some of the side effects of the drugs, such as an increase in appetite, weight gain, high blood pressure and a higher risk of infection. These side effects will decrease as your medication dosages are lowered. If rejection does occur, other transplant medications may be used to stop it.
If you are around anyone who has chicken pox or the measles, contact your doctor immediately. These childhood diseases can cause more severe illness in people taking immunosuppressant medications. Check with your doctor before you agree to any vaccinations. Do not take any other prescribed or over the counter medications without consulting the transplant team.
Complications After a Transplant
Nearly everyone with a pancreas transplant will experience at least one complication along the way. There are many possible complications, but most are minor. You may need to be seen at the UF Health Shands Transplant Center more often or be readmitted to the hospital when you have a problem. The medical staff will try to keep you informed of any concerns they might have. Inform the medical staff of any changes regarding your health. Don't forget to ask questions. To be on the safe side, keep your distance from family and friends who are sick.
If you have any of the following, be sure to let your doctor know:
- Temperature 101°F or above
- Elevated blood glucose
- Nausea/vomiting/diarrhea/ abdominal pains for 24 hours
- Decreased urine output
- Increasing redness, pain or fluid leaking from your incision
- Increasing weakness that does not get better with rest
Do not wait until your next clinic visit or until the weekend is over to report any of these symptoms.
Activities to Avoid
There are several activities you should avoid for eight to 12 weeks after a transplant as you recover. Your healing process will be slower due to the effects of prednisone. Your wound will need more time than normal to completely heal.
Avoid the following activities:
- Heavy lifting (more than 10 pounds)
- Activities that will cause a strain in your stomach muscles
- Exercises (sit-ups and straight leg raises)