While You are Waiting
There is no way to know how long you will have to wait before a deceased donor liver becomes available for you. It could be months or years, and depends on many factors. Your physician can give you some information based on your MELD score (which measures the severity of your liver disease), blood type and other factors. Be sure to ask. After you complete the evaluation, and you are accepted and listed for a transplant, waiting may be difficult. It helps to remember that once you get the phone call about a possible match, things will move very quickly.
While you wait for the organ, keep your body and mind healthy:
- See your doctor regularly
- Take your medications as directed
- Exercise to the best of your ability
- Follow your prescribed diet
- Consider joining a support group of pre- and post-transplant patients
Update the Transplant Institute with annual Pap smears, mammograms and stress tests, if told to do so by your nurse coordinator. Keep a record of any hospitalizations, infections or blood transfusions to report at each scheduled visit.
Support groups can provide reassurance and comfort, information, friendship and help in dealing with the emotional issues surrounding chronic illness and transplantation. We offer a weekly support group for liver patients who are pre- and post-transplant. Your social worker and psychologist can also help direct you to other support groups held here at BIDMC and in your local community.
It is especially important during this waiting time to stay positive and continue to address any personal growth and development challenges. We have a highly regarded behavioral health program to help people cope with the difficulties of chronic illness, to stop smoking, lose weight, treat depression and anxiety, manage stress, and to help prevent relapse to alcohol and drug use. You will work closely with the social worker and psychologist both before and after your transplant. We believe that your emotional well-being is important to the success of transplantation.
Multiple Calls and False Alarms
Unfortunately there is the chance that our team may call you to the hospital, only to find there is a problem with the new organ. Or you may come to the hospital with a medical problem - one that you did not know about - that could jeopardize your health or the success of the transplant. In these cases, it may not be possible to do the operation. Understandably this decision can be disappointing and heart-wrenching. You may feel sad, depressed, disappointed, worried and angry. Some patients say that it is a good "rehearsal" for when the transplant really does happen. Again, our behavioral health team is here to help and support you and your family during this difficult time.
Double-check Phone Numbers
Make sure we can contact you day and night, no matter where you are. We only have 60 minutes to accept or decline an organ for you, so it is critical that we know how to reach you at all times. Check to be certain that we have the right phone numbers for a family member or friend - someone who will always know where you are. We will contact this person if we can't reach you directly.