Lung Transplantation: Coping After the Transplant
How does a patient and family cope after a lung transplant?
Undergoing a lung transplant is a difficult experience for patients and their families. Facing the reality of a serious illness, fearing what is involved in lung transplantation, and dealing with complex, unfamiliar medical information can seem overwhelming and difficult to endure.
Effects of chronic illness
Pain and fatigue might become a frequent part of your day. Physical changes from a disease process might occur and affect your appearance. These changes might diminish your positive self-image.
Chronic illness also can influence your ability to function at work. Physical limitations might require you to modify your work activities and environment. Decreased work ability can lead to financial difficulties.
As your life changes, you might feel a loss of control and be more anxious from the uncertainty of what lies ahead.
Stress can build and influence how you feel about life. Prolonged stress can lead to frustration, anger, hopelessness, and--at times--depression. The person with the illness is not the only one affected. Family members also are influenced by the persistent health changes of a loved one.
- Chronic illness
- Uncertainty of future
- Unpredictability of disease
- Financial difficulties
- Disturbed sleep
- Body aches
To reduce stress:
- Keep a positive attitude.
- Accept that there are events you cannot control.
- Be assertive instead of aggressive. "Assert" your feelings, opinions, or beliefs instead of becoming angry, combative, or passive.
- Learn to relax.
- Exercise regularly. Your body can fight stress better when you are physically fit.
- Eat well-balanced meals.
- Rest and sleep. Your body needs time to recover from stressful events.
- Don't rely on alcohol or drugs to reduce stress.
How can I learn to relax?
There are a number of exercises you can do to relax. These exercises include breathing, muscle and mind relaxation, relaxation to music, and biofeedback. A few that you can try are listed below. First, be sure you have:
- A quiet location free of distractions.
- A comfortable body position (Sit or recline on a chair or sofa.)
- A good state of mind (Try to block out worries and distracting thoughts.)
- 2-minute relaxation -- Switch your thoughts to yourself and your breathing. Take a few deep breaths, exhaling slowly. Mentally scan your body. Notice areas that feel tense or cramped. Quickly loosen up these areas. Let go of as much tension as you can. Rotate your head in a smooth, circular motion once or twice. (Stop any movements that cause pain.) Roll your shoulders forward and backward several times. Let all of your muscles completely relax. Recall a pleasant thought for a few seconds. Take another deep breath and exhale slowly. You should feel relaxed.
- Mind relaxation -- Close your eyes. Breathe normally through your nose. As you exhale, silently say to yourself the word "one," a short word such as "peaceful" or a short phrase such as "I feel quiet." Continue for 10 minutes. If your mind wanders, gently remind yourself to think about your breathing and your chosen word or phrase. Let your breathing become slow and steady.
- Deep breathing relaxation -- Imagine a spot just below your navel. Breath into that spot and fill your abdomen with air. Let the air fill you from the abdomen up, then let it out, like deflating a balloon. With every long, slow breath out, you should feel more relaxed.
How can I make my life better?
The most important step you can take is to seek help as soon as you feel less able to cope. Taking action early will enable you to understand and deal with the many effects of your chronic illness. Learning to manage stress will help you maintain a positive physical, emotional, and spiritual outlook on life.
Understanding medical information
- Do not be afraid to ask your doctor, nurse, or other health care provider to repeat any instructions or explain any medical terms you don't understand. Your lung transplant team is always available to answer your questions and address your concerns.
- Make use of resources and support services in the community. Learning more about your disease will help you feel more comfortable with your treatment.
- Ask your family and friends to help you sort through the information you receive.
- Talk with other patients and families about lung transplantation.
What help is available?
There are many sources of help available to provide support for patients and their families. Among them are:
Social workers are one part of the care-giving team who can offer treatment in a compassionate setting. Social workers are available to you and your family to discuss any concerns you might have about your transplant or your personal situation.
Social workers can provide education, counseling regarding lifestyle changes, and referrals to community or national agencies and support groups.
Sometimes people have problems that are better addressed in a one-on-one atmosphere. By participating in individual counseling, you might more effectively express sensitive or private feelings you have about your illness and its impact on your lifestyle and relationships.
Individual counseling services help patients and families:
- Discuss issues of concern
- Develop and enhance coping abilities
- Gain a sense of control
- Enjoy quality of life
In addition, mental health care providers are available to create a treatment plan to meet your specific needs. Strategies can be designed to help you regain a sense of control over your life and improve your quality of life, something everyone deserves. At times, if depression is present, medicines other than those treating the physical illness might be prescribed.
Support groups are a very useful sharing experience. They provide an environment where you can learn new ways of dealing with your illness.
Sometimes, others who have been through similar experiences can explain things differently than your health care providers. You also might want to share approaches you have discovered with others. You will also gain strength in knowing that you are not facing hardships alone.
Remember that others might share information or experiences that do not apply to you. Never replace another transplant patient's advice with the advice provided by your transplant team.
Your Patient Financial Advocate is available to answer any questions you might have about financial issues related to your transplant and medical care.
Home care assistance
A representative from a home care agency can meet with you and your family members to discuss home care options, including a visiting nurse, home health aid, or physical or occupational therapist. Some insurance companies cover these expenses.
Hospice is another service available when more intensive care is needed. A hospice offers nursing services, home health aides, social work services, and pastoral care. Alternative options can be discussed when patients need more care than can be provided at home.
Quality of life issues
Information about advance directives, such as living wills and durable power of attorney for health care, is also available.
The living will exercises a patient's right to refuse or accept medical treatment that artificially prolongs his or her life. This document is prepared while the patient is fully competent, in case he or she becomes incapable of making this decision at a later time.
The living will provides clear instructions regarding the patient's choice of extended medical care.
The durable power of attorney for health care is the right of patients to appoint another person to speak for them if they become incapable of expressing their medical treatment preference. An attorney should create this document so that it conforms with state laws and court precedents.
Writing a will -- No one likes to think about their own mortality, but everyone should have a will to ensure that those who survive you will know how to carry out your wishes. This document should be prepared with your attorney.
Information for family and friends
The transplant surgery and recovery period are times of stress, and might be difficult for family and friends. Here are some tips:
- Feel free to ask questions of the lung transplant team.
- Be prepared for changes in your loved one's behavior and mood. Medicines, discomforts, and stress can cause your loved one to become depressed or angry.
- Encourage the transplant patient to be active and independent, as much as possible, to help him or her regain a sense of self-reliance and confidence.
- Be realistic about your own needs. Be sure you are sleeping enough, eating properly, and taking some time off for yourself. It is hard to offer much help when you are exhausted. If you take care of your needs, it might be easier to meet the needs of the transplant patient.
- Don't hesitate to ask other family members and friends for help. They will appreciate the opportunity to help.