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 may become a frequent part of your day. Physical changes from a disease process may occur and affect your appearance. These changes may diminish your positive self-image.
Chronic illness also can influence your ability to function at work. Physical limitations may require you to modify your work activities and environment. Decreased work ability can lead to financial difficulties.
As your life changes, you may feel a loss of control and be more anxious from the uncertainty of what lies ahead.
Uncertainty of future
Unpredictability of disease
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. 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.
- Comfortable body position, sit or recline on a chair or sofa.
- A good state of mind. Try to block out worries and distracting thoughts.
- 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.
- 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 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 at Cleveland Clinic and 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 at Cleveland Clinic 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 may 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. Your social worker also can help your family find temporary lodging in the Cleveland area, provide information about Cleveland resources, assist with parking discounts, and help you with any other needs.
If you would like to make an appointment with a social worker, please call 216.444.6552.
Sometimes people have problems that are better addressed in a one-on-one atmosphere. By participating in individual counseling, you may more effectively express sensitive or private feelings you have about your illness and its impact on your lifestyle and relationships.
Cleveland Clinic offers counseling services to 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, medications other than those treating the physical illness may be prescribed.
If you would like to make an appointment for counseling with a mental health professional, please call 216.444.5812.
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 may 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 may share information or experiences that do not apply to you. Never replace another transplant patient’s advice with the advice provided from the Cleveland Clinic Transplant Team.
Here are a few support groups that you and your family may contact:
Second Wind Lung Transplant Association, Inc.
300 South Duncan Avenue, Suite 227
Clearwater, FL 33755-6457
Ph: 888.855.9463 or 727.442.0892
Transplant Recipients International Organization (TRIO)
P.O. Box 210053
Cleveland, OH 44121
2117 L Street NW, Suite 353
Washington, DC 20037
Your financial counselor is available to answer any questions you may have about financial issues related to your transplant and medical care.
If you would like to make an appointment with a financial counselor, please call 216.444.9286.
Home Care Assistance
A representative from Cleveland Clinic Health Care Ventures, Cleveland Clinic’s home care services, 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. For more information, please call 216.444.4663.
The Hospice of Cleveland Clinic is another service available when more intensive care is needed. The 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. For more information, please call 216.444.9819.
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.
Copies of these documents are available from the Health Information Library: call 216.444.3771. You also can receive information from the Cleveland Clinic Ombudsman by calling 216.444.2544.
Writing a will
No one likes to think about their own mortality, but everyone should have a will to ensure that 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 may 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. Medications, 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 may 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.
For More Information
If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.