Proactive Waiting

Keep as Healthy as Possible

While you wait for the call that a liver is available, it is important to follow the instructions given by the center to care for your health. Your health needs to be as good as possible prior to surgery.

Other ways to stay healthy and focused while you wait include:

• Exercising appropriate to your condition
• Watching your diet
• Taking the medication prescribed
• Taking care of your routine check-ups, immunizations, and tests, including dental work. Post-transplant surgery dental procedures and other minor procedures may become a bit more complicated.

Know how to get in touch with your transplant coordinator and hepatologist. Know the physical signs that require a call or even hospitalization. Ask your doctors and transplant team if there is anything that you can do to stabilize or improve your nutritional intake or muscle strength as you wait for your transplant.

Keep Your Insurance Current

The social worker at the transplant center and the center’s business office can explain the importance of understanding what your policy covers, including pre-existing conditions. It is your responsibility to know what you can expect in terms of coverage. If you lose your insurance, it is important to keep the center informed, and work with them as you re-obtain coverage. There are resources for patients in that situation. Click here for resources about insurance coverage. You may need to plan for additional expenses related to surgery, such as medication coverage, travel expenses for yourself and caregivers, and comfort items.

Stay Educated

Use the waiting time to increase your knowledge. Here are some suggestions:

• Continue your education on transplants 
• Attend meetings for patients
• Prepare yourself mentally 
• Talk to liver recipients
• Find a mentor
• Try to keep in touch with friends

You may not be able to do everything you once could, but it is important to keep some normalcy in your life.

Keep Your Blood Tests Current

It is critically important to stay current with your blood tests. At low MELD/PELD levels you will need blood tests less frequently, but, as the score rises, you will be told to get them on a more rigorous schedule. If the results are not updated on schedule, your MELD/PELD score, which is reported to UNOS, will be lowered to a default number until you get the tests.

Keep Your Caregiving Team Involved

Let your caregiver in on your thoughts and how you are doing. Ask for help when you need it.