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It may be some time before you have your transplant surgery. While you wait, it is important to follow the steps listed below.
See your doctor regularly
Get regular dental exams
Eat the right foods
Quit smoking
Be sure we know where to contact you
Plan for your transportation
Plan for you children and pets
Plan where your family an stay
Plan what to bring to the hospital
Prepare your family and friends
Prepare yourself emotionally
Problems to watch for while you wait
See your doctor regularly
It is your job to schedule all doctor visits. You will need to see a liver doctor (hepatologist) from the Transplant Center at least every three months. He or she will assess your condition, order lab tests, adjust your medicines and tell you how
often you will need to have check-ups. Some of these check-ups may be done with your family doctor.
You will need to see your family doctor for general health care. Your doctors will write to each other to share the results of your exams and note any changes in your health.
To stay active on the transplant waiting list, you will also need to have regular lab tests at your local clinic to determine your MELD score .
Please see your family doctor for the following tests and vaccines. Have your doctor send all test results to your transplant coordinator.
- You will need a Mantoux test to see if you have ever been exposed to tuberculosis (an infection that affects the lungs). This is given with a very small needle on your forearm. You must return to your clinic 48 hours after the test so your doctor can check the result. If you have a reaction to this test (a raised red area on the skin), you will need to see an infectious disease specialist at the University of Minnesota Medical Center.
- You will need to have a pneumococcal vaccine (shot to prevent pneumonia), if you have not had one in the past five years. You will also need hepatitis A and B vaccines. Please keep a record of these shots.
- We suggest that you get yearly flu shots.
- Women should see their family doctor for a yearly Pap test and, if they are over age 40,
a mammogram. If you have had an abnormal test, tell your coordinator.
Get regular dental exams
All necessary dental work should be completed before your transplant. You should see your dentist every six months while you are waiting for the transplant.
Eat the right foods
Your liver disease may change the way that your body stores nutrients. For this reason:
- Your doctor may suggest special vitamin and minerals supplements. Do not take any other vitamin, minerals or herbal products without first discussing them with your doctor. Some of these products may cause liver problems. Please tell your transplant coordinator if you start any new medicines, vitamins or herbal products.
- If you have fluid retention (bloating or swelling), you may need to restrict your sodium (salt) intake. Avoid any foods that come out of a bottle, box, can or jar. Processed foods tend to be very high in sodium. Fresh fruits and vegetables are best.
- To reduce stress on the liver, limit animal proteins such as milk, cheese, yogurt, meat, fish and chicken. Instead, choose vegetable proteins such as cooked legumes (dried beans and peas).
- Your dietitian can help you build a healthy meal plan. The goal is to get enough calories and protein without putting stress on the liver.
Quit smoking
If you smoke, you need to stop. Smoking increases the risk of heart and lung problems (such as pneumonia) after surgery. Smoking after transplant also increases your risk of cancers of the mouth, throat and lungs.
Be sure we know how to contact you
If your liver will come from a deceased donor, we will call you when a liver is available. If we can’t find you, you may lose the chance for this liver. We will not leave a message on your answering machine or voice mail.
We must have current phone numbers where you can be reached 24 hours a day. This may include numbers for close friends, family and work. Please call us right away if a phone number changes. You will also need to contact the transplant office any time you are in the hospital.
It is helpful if one family member always knows where to reach you.
Plan your transportation
If your liver will come from a deceased donor, arrange your ride to the hospital in advance. Plan more than one route in case of rush hour or bad weather. You may need to arrange air travel if you live more than six hours from the hospital. It might be a good
idea to call your local airlines to get their schedules.
Some families arrange for a company plane. Check with corporations in your area—they may be willing to make a plane or pilot available. This is good public relations, which is why many are able to help.
Plan for your children and pets
You will be in the hospital for at least two weeks. Some people stay as long as two months. If you have children, now is the time to plan for their care while you are in the hospital. Get them used to another home if they will be staying there.
Your children may visit you in the hospital, but they must be carefully supervised and have no contagious diseases.
If you have pets, you will need to arrange for their care as well.
Plan where your family can stay
If family and friends will stay in the Twin Cities while you are in the hospital, start looking for hotels. Start by checking our
housing information
on this Web site. You may also ask your social worker for options. Or call our Accommodations Office at 612-273-3695 or 1-800-328-5576.
Family members may not stay overnight in the hospital if you have a semi-private room.
Plan what to bring to the hospital
Make a list of items to bring with you to the hospital. Be sure to include:
- Comfortable clothes (jogging suits, sleepwear) that have soft, elastic waistbands or no waistbands
- A list of your current medicines (bring this to every clinic or hospital visit)
- A favorite pillow or blanket
If your liver will come from a deceased donor, be sure your packing list is ready when the doctor calls.
Prepare your family and friends
Please tell visitors that plants and flowers (cut or dried) are not allowed in your room. Your medicines will lower your immune system, and plants and flowers may increase your risk for fungal infection. When you return home, this will not be a problem.
Remind your family and friends that they need to take care of themselves in order to be the best possible support for you. This includes getting plenty of sleep, eating regular meals and limiting caffeine and tobacco. You might also warn them that you will tire easily for the first three to six months after your transplant.
Prepare yourself emotionally
Waiting for your transplant is stressful. Patients have told us that being in the hospital after the transplant is also difficult. Please think about how you and your family have dealt with great stress in the past. Think about what helped you through these periods as well as what you would like to do differently this time.
If you are having a hard time, please ask for help. Social workers, transplant coordinators, clergy and other support staff are here for you. You may want to ask your social worker about our weekly support groups. Family and friends are invited to attend.
Finally, try to take a tour of the University of Minnesota Medical Center. This may be very helpful for you and your family. Your social worker can arrange the tour.
Problems to watch for while you wait
Be on the alert for any of the following symptoms. These may be signs that your liver disease is getting worse. If you notice a change, call your family doctor and your transplant coordinator.
Feeling sleepy or mentally cloudy
People with liver disease often have low energy and trouble sleeping. It is common to want to sleep all day and stay up all night. If these are problems for you, be sure to tell your doctor. Take a short nap in the afternoon if you need to. As your liver disease gets worse, your ammonia levels may rise. (Ammonia is a waste product of the body.) This can cause your thought process to slow or you may feel confused. Your family may be the first to notice this. You might need medicine to help you think more clearly. If you feel this way, do not drive.
Signs of bleeding
It is important to watch for any signs of blood in your vomit or stool (bowel movements). This can be life threatening. Call your family doctor or go to the emergency room if:
- Your vomit is bright red or dark brown (like coffee grounds).
- Your stool is black.
You may also notice that you bruise more easily and that bleeding from cuts may be harder to stop. You may have nosebleeds. If using pressure will not stop the bleeding, call your family doctor or go to the emergency room.
Fever
Call your family doctor if you have a fever over 101°F (38.3°C) (taken under the tongue).
If your liver is failing, you cannot fight germs as well and may get sick more often. An illness can be much more severe for you than for other members of your family.
Fluid retention
When the liver is not working well, fluid may leak out of your blood vessels and build up in your abdomen (belly). This fluid is called ascites. If your belly gets large and you have trouble breathing, call your transplant coordinator or go to the emergency room. You may need to have fluid removed from your belly.
Swelling or fluid build-up may also occur in other parts of the body, such as in your legs or ankles. This is called edema. If you notice swelling, it may help to limit your
salt intake.
Jaundice
When your liver isn’t working well, you may notice that your skin or the white parts of your eyes turn yellow. This is called jaundice. You may also notice darker urine or itching skin. This is not unusual. Be sure to take good care of your skin and use
lots of lotion. You may also ask your doctor for medicines to help with the itching.
