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Quality-of-Life

LIVE LIFE TO THE FULLEST

Quality-of-life means different things to different people. It depends upon what makes you happy. Some transplant recipients may want to get back to the life they had before the transplant while others may want to achieve new goals.

Now that you have been given a second chance, make it your goal to stay positive, stay healthy, and live life to the fullest.

COPING WITH TRANSPLANTATION

Undergoing a transplant can be a challenging experience for patients and their families. Both can feel overwhelmed by the reality of a serious illness, uncertainty about complex, unfamiliar medical information, and concern about the future. Pain and fatigue may be frequent companions. Physical changes may affect your appearance. All of these factors can produce stress that leads to frustration, anger and — at times — depression.

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You can take several steps to keep your spirits up:

  • Keep a positive attitude
  • Accept things you cannot control
  • Be assertive (but not aggressive). "Assert" your feelings or opinions instead of becoming angry or passive
  • Learn to relax
  • Get adequate rest and sleep
  • Exercise regularly
  • Eat well-balanced meals

Use active coping strategies to minimize stressful events. Active coping strategies allow you to take responsibility for a situation by taking a break (e.g., a hobby) or addressing the way you respond to stress (e.g. talking things over with friends, staying fit and healthy). In contrast, "avoidant" coping strategies, such as alcohol use or emotional withdrawal, are aimed at distancing yourself from the stress. Generally speaking, active coping strategies are better ways to deal with stressful events, and may improve quality-of-life before and after transplantation.

Taking action early and learning to manage stress will help you maintain a positive physical, emotional, and spiritual outlook on life.

You Are Not Alone

In the months after a transplant, you may feel angry or depressed or frustrated. If you experience any of these emotions, you are not alone. You can seek help when you feel unable to cope. Emotional and psychological support is vital to your well-being.

Talk to your transplant team if you are experiencing emotional problems. Also, let family members and friends know you still need their support. In addition, there are many other sources of help available to provide support for patients and their families:

  • Social workers (your transplant team may be able to provide referral resources to transplant social workers. Social worker can also suggest counseling services that will help you and your family deal with emotional issues)
  • Individual counselors (can help you develop and enhance coping abilities).
  • Psychologists and psychiatrists (can help you see new constructive ways to live life to the fullest)
  • Support groups (provide a useful sharing and learning experience)
    • Local support resources (at your transplant center or in the community)
    • Mentoring (learn from someone who has been through the same kind of transplantation)
  • Professional organizations (offer educational seminars, materials, and activities). For example:

PHYSICAL SIDE EFFECTS OF ANTI-REJECTION MEDICATIONS

Anti-rejection medications can cause side effects that can change your appearance and affect quality-of-life. Side effects — such as puffiness, weight gain, excessive hair growth, acne, round face, and enlarged gums — can lower your self-esteem. However, these side effects are usually treatable and they will likely to go away. You can also seek counseling or join a support group to help you get through the tough times. Remember that some side effects are only temporary and you will be feeling better soon.

Here are some suggestions to help you deal with common side effects of anti-rejection medications:

  • Acne. Steroids can cause acne. The occurrence of acne can be reduced by keeping your skin clean and using an anti-acne product. If necessary, ask your transplant coordinator to recommend a dermatologist.
  • Hair growth. Excessive hair growth is a side effect of cyclosporine and prednisone. Plucking or waxing may be hard on your skin because prednisone can also cause skin sensitivity. Ask your transplant coordinator for a safe way to remove unwanted hair.
  • Round face. Your doctor may be able to adjust your medication if this becomes a problem.
  • Enlarged gums. Some anti-rejection medications can cause the gums to enlarge. Good oral hygiene will reduce the occurrence of this problem. Your transplant team may also want to adjust your anti-rejection medications to relieve this side effect.
  • Weight gain. Weight gain is a problem for many transplant recipients. Watching your calorie intake and getting regular exercise is your best defense against putting on too many pounds.

GOING BACK TO WORK

Most transplant recipients can go back to work 1 to 6 months after surgery, depending upon the type of work. Some transplant recipients need to start slowly and work part-time or work from home until they build the strength to work full-time. Your transplant team can help coordinate with your employer to accommodate any restrictions you may have.

If you are unable to return to your job, you may want to explore other employment options. This may involve job training. Nearly all transplant recipients who are receiving Social Security disability income are eligible for the state Vocational Rehabilitation and Employment Programs. Contact your social worker to help with a referral to your local program.

If you are looking for a new job, some potential employers may be hesitant to hire transplant recipients. Be aware that the Americans with Disabilities Act provides some protection against discrimination.

Staying active is very important. If you are retired, you may want to be a volunteer for a local school, hospital, or charitable organization. This will allow you to remain physically and mentally active.

RESUMING ACTIVITIES

Doing the things you enjoy is good for your physical health and emotional well-being. However, you will want to avoid activities with a high risk of injury during the first year after your transplant. During this time, your dose of anti-rejection medications will be at the highest levels. If you are injured and require surgery during this time, there is a greater chance of infection. Even after the first year, risky activities should be carefully considered. Ask your transplant team what activities are safe for you.

BUILDING RELATIONSHIPS

Family Dynamics

This may be a stressful time for your entire family. Roles may have changed before the transplant. Spouses, children, and other relatives may have taken on additional daily responsibilities. Now it is time to re-establish your family roles and relationships. Families feel better and cope better when they discuss each member’s feelings about how the transplant is changing their lives. Families may also feel better when they make plans for the future. The transplant social worker is available to help children and families adjust.

Social Relationships

Chronic illness often means time away from friends and family members who provide your social support. Reaching out and getting back into your social routine is important, but it can be challenging. Here are some tips that might help you reconnect:
  • Spend time with friends as much as possible
  • Use humor to start conversations
  • Be willing to accept as well as give support
  • Share your transplant story with friends so they feel a part of your experience

Sexuality and Sexual Function

Many transplant recipients have concerns about sexuality. Sexual function and sexual interest may depend on how well your body is healing. Sexuality might also be affected by the side effects of medications.

Some men may have trouble getting or maintaining an erection. Your doctor may prescribe a medication for erectile dysfunction. Women may experience vaginal dryness, which causes discomfort during intercourse. Some side effects cause changes in your appearance and can make you feel more self-conscious and less attractive. Talk to your doctor or transplant coordinator about ways to diminish side effects.

Some transplant recipients simply have less desire or interest in sex. Some partners may be afraid that they’ll hurt the transplanted organ during intercourse. Communicating with your partner and your transplant team can help resolve problems.

It is important to remember that sexual contact is a potential way to get an infection. For example, kissing can expose you to an active illness such as a cold or viral infection. You can also get sexually transmitted diseases that can cause significant health problems. Protecting yourself from sexually transmitted diseases is important. Latex condoms, when used properly, can greatly decrease the risk of infection.

Maintaining a Healthy Relationship

Interpersonal relationships can be challenged by the issues that a transplant recipient faces. For example, changing roles, dealing with side effects of medications, changing perspectives on life and living, and financial issues may affect a couple’s relationship.

It is important to understand that your partner has gone through a lot too. Talk about ways to get your relationship back to normal. For example, if you used to go to brunch on Sundays, make it a date. Or, make some new traditions such as renting a movie every Friday night. Spending quality time together is vital to the health of your relationship. Talking about your feelings and asking your partner how he or she feels can create a stronger and healthier relationship.

Getting Over the Guilt

Some transplant recipients feel guilty that they received a new organ while others on the waiting list were not so lucky. Others feel bad that someone had to die so they could live. It is important to remember that you are alive because someone decided to be an organ donor and give the gift of life. The best way to say "thank you" for your gift is to do everything you can to take care of the new organ and to keep it, and yourself, healthy.

SCHOOL AND PLAY

Returning to School

Most students can return to school 6 to 8 weeks after a transplant. Some may return to school full-time while others may want to go half-days for a few weeks before returning to a full-day schedule.

Before your young transplant recipient goes back to school, you may want to talk to the teachers, principal, coaches, advisors, counselors, and the school nurse about any special needs your child may have. You may also want to discuss any special needs such as time off from contact sports, special diet, or protection from infection.

Your child may worry about being able to do schoolwork as well as before the transplant. Maybe his or her handwriting is a little shaky, or it might seem difficult to concentrate or remember things as well as before. Here are some tips that may help your child:

  • Keep a list and use a calendar.
  • Ask the teacher or guidance counselor about ways to improve study skills.

Young transplant recipients may have been away from most of their friends and classmates for a few months or more. It is not unusual if it seems awkward when they go back to school and see their friends for the first time. Encourage your child to take the lead and talk to his or her classmates first.

When the transplant team says it is okay, your child can take part in games and sporting activities and can even participate in competitive sports. However, rough contact sports such as football may not be a good idea. Talk to the transplant team about which sports are safe and what precautions you might want to take.

EMOTIONAL ASPECTS OF LIVING DONATION

There is growing public awareness of living donor transplantation as increasing numbers of potential donors respond to the organ shortage.

When considering the donation of an organ, it is important for the potential living donor to reflect on issues such as their motivation, their emotional and psychological well-being, personal and family consequences of donation, and direct and indirect financial costs.

Organ recipients may have ambivalent feelings about a living donor. They may feel gratitude and a special bond with the living donor. On the other hand, they feel guilty and indebted to the donor. For these reasons, potential organ recipients may not pursue living donation. Potential organ recipients may also be reluctant because do not want to harm or inconvenience the donor, do not want to accept an organ that a family member might need later, or do not want to disappoint the donor if the transplant fails. The emotional responses of potential donors may also vary.

Both recipients and donors can gain from professional support to deal with this situation in ways that balance their medical needs and personal relationships.

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