Coping with transplantation Part 2: posttransplant phase

Progress in Transplantation, Mar 2004 by Mize, Janet B, Cupples, Sandra A

Initially after the transplantation surgery, patients and family members often experience a period of elation. This period of joy stems from the realization that the patient has survived both the waiting period and the surgery itself. Patients and their loved ones are relieved that this difficult time is behind them and they look forward to the future that the gift of live affords them. In addition, patients who are initially on rather high doses of steroids may experience euphoria-one of the side effects of this medication. After time, however, this initial joy may fade and patients and family members may experience some posttransplant Stressors. These Stressors and potential coping strategies are discussed below.1

Discharge ("Separation") Anxiety

Often, recipients feel anxious about leaving the "safe haven" of the hospital. In particular, they may fear being separated from the transplant team who has cared for them for many months or years. Other recipients and family members may lack confidence in their ability to follow the complicated posttransplant regimen or worry about "something going wrong" after discharge. The first thing to do about these Stressors is to realize that they are normal. Many, if not most, transplant recipients have these concerns. It is important to realize that your transplant team will gradually "wean" you from total dependency on hospital staff. Even before you actually leave the hospital, you will begin to take over certain aspects of your care-such as taking and recording your blood pressure and taking your medications. It is also important to remember that your transplant team is only a phone call away at all times!

Fear of Rejection

Fear of rejection is common among most transplant recipients and their family members. In coping with this fear, it is important to remember that solid organ transplantation is no longer experimental. On the contrary, it is a well-established surgical procedure. Both graft (organ) and patient survival have increased substantially over the past several decades. As long as you take your medications exactly as prescribed and follow all of your transplant team's instructions, there is a good probability that your doctors can successfully treat any rejection episodes you might have.

Guilt

Transplant recipients may feel "guilty" for several reasons. Some experience guilt because other candidates did not survive until transplantation or other recipients may have died. Other recipients may feel like they are a burden to their families. Some recipients feel guilty about the misconception that "someone had to die" in order for them to live. Tn coping with these guilt feelings, it is important to realize that the fact that you have lived and other candidates and recipients have died is beyond your control. Rather than dwell on guilt feelings, many recipients have found that it is helpful to channel their emotional energy into giving back to the community. Many transplant recipients feel the need to do something in return for the "gift of life" that they have received. Some recipients do this by becoming spokespersons for organ and tissue donation.

It is true that your family members or caregivers may have endured a large amount of stress while you were ill. But now, their reward is 2-fold: you are well and on the road to recovery and life is getting back to normal. You may feel that you can never repay your loved ones for what they sacrificed for you. Rest assured-they are not looking for rewards. However, little tokens of gratitude are always appreciated. A handwritten note, a flower plucked from the garden, a special home-cooked meal are inexpensive but heart-felt expressions of your care and concern for them.

Lastly, it is important to remember that you received the gift of life, not because someone died, but because the donor's family generously donated his or her organs.

Resumption of Previous Family Roles

Once they are well on the road to recovery, most transplant recipients are anxious to resume their previous roles of "breadwinner," spouse, homemaker, student, etc. However, recipients may initially encounter some resistance from other family members who have had to temporarily assume these roles. For example, a wife may have had to reenter the workforce, take over all household tasks, and become the major decision maker during her husband's illness. Now that her husband is well and wants to resume his role in the family, the wife may not want to "give up" some of this autonomy. If you are having problems like this, talk to your family members, share your frustrations, and listen to their concerns. In most instances, it is possible to work out compromises that are acceptable to all concerned.

Body Image

Transplant medications, particularly antirejection drugs such as steroids and cyclosporine, have side effects that may affect your body image. Most transplant recipients take a steroid, such as prednisone, immediately after surgery. Some transplant programs gradually wean their patients off prednisone if their biopsies are good.