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  The Alpha-1 Patients and Family The topic March 4th, 2009: Emotional and physical setbacks can come at anytime. As noted in the previous session due to lots of changes in your life after transplant, unexpected emotions and physical changes can occur. If up until now you have experienced no such setbacks, consider yourself fortunate. However, for those of us who have experienced difficulties then discussing them openly may help us all to deal with them. After an organ transplant starting within a year you may begin to experience changes physically due to the medications. At this point it may become a juggling act with medications to prevent your immunosuppressive drugs from causing problems. Most of us may experience excessive hair growth, possible broken bones, weight gain and other health problems as we continue to move back into a normal lifestyle. Excessive hair growth problem may be more problematic for women than for men, as women may have to resort to depilatories, waxing, or shaving to remove hair from unwelcome places such as face and arms. Plucking eyebrows and waxing the moustache area above the lips may be hard on your sensitive skin. During the early post transplant period any slight changes physically can affect us as we are emotionally vulnerable. One of the more common health issues is skin cancer due to our drug regimen. We find ourselves at risk from the rays of the sun. Actually, we are at risk for all types of cancer. Remember to always be careful while outside. Be sure and use sunscreen and wear clothes that leave little skin exposed. Regular checkups with a dermatologist are recommended. Exercise before and after transplant is very important, though avoid contact sports as some of the drug regimen before and after transplant may have caused bone and muscle loss. You may find that you have developed issues with compressed vertebrae or osteoporosis. A bone density scan will determine if you have developed osteoporosis. There are now many prescription drugs that can help stop or replace bone loss on the market today. A recommended exercise regimen to strengthen your muscles and bones can be designed for you individually in a good rehab. Even after physical rehabilitation, however, you may face functional limitations and medical restrictions to your activities. Employment is an important aspect to the re-establishment of a transplant recipient's identity, self-esteem and quality of life. As time goes by other medical issues may surface. Sometimes the medications you started on right after transplant no longer work and will be changed for newer products that may do less damage the body. Talk to your transplant team immediately if you experience any of the following signs or symptoms of rejection or infection:
It is essential for recipients to maintain their healthy habits, as these drugs can be toxic to the new organs. There are many 12-step programs available for patients battling addictions and their families, inpatient and outpatient treatment programs and support groups. Smokers can discuss anti-smoking prescriptions with their surgeon and many other types of therapies for smoking cessation are available over the counter. Depression after surgery is not isolated to people with unrealistic expectations; it is common with chronic illnesses and major surgeries. While many have a tendency to deny there is a problem, confronting depression and seeking treatment is essential to maintaining good health. Transplant recipients who are depressed are more likely to return to addictive behaviors and less likely to take an active role in their recovery and long term health. Younger female transplant recipients who are able to return to a full and active life may have concerns about pregnancy, their ability to become pregnant and the affect anti-rejection drugs may have on the unborn child. In some cases, the surgeon may recommend against conceiving as the body may not tolerate the extra stress caused by pregnancy and childbirth. In these cases, patients may benefit from a support group dedicated to infertility or a transplant support group. For women who have a physician's approval to conceive, discussions with both the patient's transplant surgeon and potential obstetrician may answer questions and alleviate any concerns. Transplant surgeons are an excellent source of referrals to an obstetrician with experience caring for pregnant organ recipients. Relationships can be strained by long-term illnesses, but over time families learn to cope with a loved one who is desperately ill. Family members and friends become accustomed to stepping in and providing care and support to the patient, but often struggle when the situation is rapidly reversed. A wife who has become accustomed to helping her husband take baths and providing meals can feel completely elated, but helpless, when her spouse is suddenly doing yard work. The transplant recipient can be frustrated when they are feeling like their old self yet their family continues to try to do everything for them. Children who are accustomed to going to their father for help with homework or permission may inadvertently neglect to give mom the same courtesy when she is ready to take a more active role in parenting. The amount of assistance needed should be determined by the way the recipient is feeling, not on established routines from before the transplant surgery. Too much too soon is not a good thing and can lengthen recovery, but independence should be encouraged whenever possible. The situation is not unlike a teenager who wants independence and a parent who wants their child to be safe, struggling to find a happy medium that they can both live with. I hope the previous information has been helpful. Now lets open the conference call for comments.
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