_ Liver transplant patients often cannot believe how quickly they start feeling physically better. Their new liver usually starts working right away, providing relief from most of the symptoms and complications that they suffered through for so long. The feeling of gratitude for having a second chance at life are indescribable—a very high emotional level.
Some individuals have a hard time recovering from the surgery. Others take a while to recover completely due to other health issues or the ravages on their bodies from their previously failing liver such as the loss of muscle mass. Still other individuals rebound from the emotional high of not only having a functional liver but having survived what is probably the most invasive, non-emergency surgery that can be performed.
The First Year In general, the first year following transplant is best characterized as a period of readjustment and rehabilitation, with gradual improvement in all Quality of Life measures. Just continuing to recover and deal with day to day activities often bring new levels of stress into the lives of both the recipient and the caregiver. According to Medscape.com, some of the more common stressors during this time period are:
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Coping with physical changes and early complications such as organ rejection
Enduring the emotional highs and
lows that sometimes occur as side effects of immunosuppressive medications such as corticosteroids
Managing a complex regimen, called "compliance", that encompasses: (1) multiple medications and dosing schedules,
(2) monitoring vital signs, (3) exercise and dietary prescriptions, (4)
regular follow-up medical evaluations and laboratory tests and (5)
lifestyle restrictions related to smoking, alcohol, and other
potentially harmful substances.
Altering self-perceptions (ie,
transitioning from their roles as critically ill or dying patients and
family caregivers to roles and lifestyles that are less illness-focused)
Psychological acceptance of the
transplant and, for deceased donor recipients, dealing with the fact
that someone lost their life just when they regained theirs. It is important for the recipient to understand that the donor did not die just so the recipient could live, rather the donor died and gave their final gift so the recipient could live.
Coping with financial and economic
issues (ie, cost of transplant surgery, hospital stay, and/or follow-up
care and medications).
One of the biggest stressors for both the recipient and the caregiver is to maintain compliance to the medications and follow up appointments following surgery. Medications and dosages change rather quickly during the first 3 months following surgery. Blood needs to be drawn at least 3 times a week right after surgery, gradually dropping to once every month or two depending on how well the patient is recovering. The frequent lab tests allow the med team to track the results of medication and dosage changes.
Now is also the time of more education. Look to your med team to get more detail about the changes that the recipient will experience. Again, the more you know about what to expect, the less likely you will be surprised if something comes up. Learning about the good things that are happening with your loved one also makes for pleasant experiences than what was experienced prior to transplant.
Maintaining contact with other transplant recipients can be helpful. Post-transplant support groups are equally as important as pre-transplant support groups. However, groups may not be accessible to patients who live long distances from the transplant center except at the time of medical follow-up appointments, which generally become less frequent during the course of the first post-transplant year. A partial solution is Internet-based online support groups, either in the form of real-time "chat room" discussion groups or a "bulletin board" to which individuals post messages to which others may respond at any time.
MDJunction.com is an excellent example of an online support group that offers both "chat room" and "bulletin board" features. There is an organ-transplants group, caregiver group and an excellent cirrhosis group as well as over 700 other support groups—people helping people. It is essential, however, that patients and families who use these resources keep in mind that any type of group is not the appropriate forum for handling critical medical or psychosocial issues or emergencies.