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  The Alpha-1 Patients and Family The topic Feb 4th, 2009: Different stressors in your life that are not always in your head and these stressors can make you feel like you have reached the end of your emotional rope. Human events are never uncomplicated. Personal illness is number six according to a team of United States Navy physicians who developed a major life stressor list. Needless to say, learning that you must undergo a transplant to save your life is a major stressor. You must prepare yourself mentally and emotionally for this radical surgical procedure, while trying to cope with the chronic effects of an end-stage organ disease. There may be long hospital stays in particular for patients waiting for a liver transplant due to encephalopathy (altered mental status) or bleeding problems such as gastrointestinal bleeding. Lung transplant candidates may develop pneumonia. Diminished energy is a problem for many pre-transplant patients. Don't let your fatigue diminish your desire to do as much exercise physically as possible. Exercise will help you mentally as well as physically. Sometimes you have to push yourself, but living as normal a life as possible while awaiting the transplant can benefit your postoperative recovery. Exercise will increase your energy and relax you. Exercise can expand your mind and lift your spirit. Be sure if you walk alone that someone knows where and what time you do this so they can find you if you do not return home in a reasonable amount of time. Remember you must conserve enough energy to get home. Some candidates waiting for their transplant may be passed over by someone who was placed on the list after them. There are many variables for a transplant involved in an organ match as well as the severity of the illness. Prepare yourself with this knowledge so that this stressor will be less frustrating if it happens to you. Also, the knowledge that someone has to die cannot make you feel guilty. Yes, unfortunately, some one must die in order for you to receive your organ, but that person was good enough in life to choose to donate—to give the gift of life at his or her death. I found when faced with this stressor that support from transplant recipients in support group meetings prior to transplant helped me understand and accept the gift with gratitude and humility. Post transplant emotional setbacks may stem from the large amount of medications you will be on along with the feelings of uncertainty about your future, identity, body, and self. The post-transplant time is a good time, but it is not without its concerns and problems. A new recipient is torn between dependence and independence. Every recipient may find they are a little reluctant after the transplant for discharge. You may have the “what ifs' uppermost in your mind. Remember the transplant team is still available at the end of the telephone. However, most of us found ourselves between anxiety and complacency. It becomes a process in which you take back charge of your life, of course while being compliant and having no complications. Of course we all have the fear of organ rejection. This would be a perfectly normal fear. However, it doesn't help to live the rest of your life worrying of such an event. Remember, if this does occur, your physician can make adjustments to your medications to stop rejection in most cases. Just be sure to take your medications faithfully. Using relaxation techniques can help abate the fears. Some of use may have a setback emotionally from the feeling of victimization because we experience the failure of an organ through no fault of our own. The feeling that you do not deserve this is neither comforting nor productive. If left unchecked, you can succumb to depression. Self knowledge can be the key to regaining your health. Finding oneself on such a negative realm with such powerful feelings can lead you to no good end. One must work toward balance and harmony. Post-transplant body image will present you with some physical challenges. You will have to contend with weight gain, scarring, and excessive hair growth precipitated by the effects of the surgery and the immunosuppressant drugs. We know the emotional side of such drugs like prednisone which enhance emotions both high and low. Physically, prednisone will make you gain weight because it is a steroid and stimulates your appetite. Right after the surgery most transplant patients have no appetite. Then as time goes by our appetite and weight gain begins to make our lives a battle of learning new healthy ways of eating and exercising to control our weight. But take heart—you can win the battle. It just takes time, exercise, patience, and a healthy well-balanced diet. According to the book “Coping with an Organ Transplant”, your body image is your perception of your outer self. Your perception may not always conform to reality. It may be modified by your emotions and psychological and social influences. Your self image—that is, your image of self worth—is very much within your control. Of course you can diet and exercise and use soap and water and various oils and ointments. What you can not do is to sit and wait for strength and beauty to return! Your total wellness is your biggest post transplant job, and it is pretty much all up to you. Next month we will continue to look at setbacks and how to deal with them for those of us who have been transplanted some time ago.
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