Relocating Pre-Transplant | Fundraising | Pre-Transplant Care giving | Caregiver’s Role in Nutrition | Patience Required | Through the Transplant | After Discharge
As a caretaker for a loved one undergoing a lung transplant, your role has, for many years, been supporting, advocating and guiding the patient through times of illness, hospitalizations, doctor’s visits and emergency situations. Your strength, compassion and love have brought you to assist in the life-changing experience of a lung transplant. You have accepted the day-in, day-out responsibility to care for and provide your loved one with a healthy environment mentally, emotionally and physically while they prepare, undergo and recover from a lung transplant.
For many patients, relocating closer to the transplant center is required. Doing your homework now will make the transition much easier. Become familiar with the transplant center and its surrounding community, look at apartments and other places to stay, and find a location where you will feel safe and comfortable. Many communities offer amenities such as fitness centers, pools and walking trails, which offer healthy, inexpensive activities to enjoy while you are there. The transplant experience is life-changing for the recipient and for you. It can be extremely stressful, even in the best of circumstances. Recommitting now to your own health by developing better diet and exercise habits will help strengthen you and lower your stress level when your care receiver needs you the most.
When you search for housing, look at every option through the lens of health and safety. Try to find places with well lit paths and parking. Check ventilation systems and air returns for excessive dust. Check bathrooms and under sinks for signs of mold or mildew. Inspect the carpets and furniture for cleanliness. Due to the post-transplant immunosuppressant drugs that can leave a patient more susceptible to infections, air quality is very important. Your transplant coordinator will have a list of apartments and hotels nearby. You can also check social media sites such as Facebook and transplant center support groups.
During the financial interview at the transplant center, a counselor will give you an estimate of the typical expenses associated with transplant. Some insurance policies offer financial assistance and reimbursement for travel and relocation expenses. Open the dialogue now with family and friends, asking for assistance to help offset the expenses and to come up with fundraising ideas and a plan. This may seem like a difficult task now, but you will likely have more time now than you will amid the daily pressures of caregiving after the transplant. Setting up a fund, reaching out within your community, your workplace, church family, local organizations, neighborhoods and schools for help will ease the financial burden as the surgery draws near. Fundraisers are great opportunities for communities to come together and for friends and families to show their support. There are many creative ways to raise money: walk-a-thons, sporting events, concerts, and dinners.
Close family and friends may ask if they can personally help. If ever there is a time to say YES, it is now. Establish a network of family and friends to assist you and identify backup caretakers who can provide respite care when you need it. The long term-financial needs of a lung transplant patient are extensive. By rallying support now and helping friends and family to understand this extreme situation, you will help the patient in the long run.
The transplant journey is an extraordinary experience that reaches beyond most people’s normal scope of medical expenses in perhaps a lifetime. Creating a supportive network is key. Don’t be too proud or embarrassed to ask for the help you need financially and emotionally.
As part of the evaluation, the transplant coordinator will discuss your role in the transplant process. Each center will have specific guidelines to follow but they generally require that you are able to provide a safe, healthy environment for the patient and that you are willing and capable of assisting him or her. Most centers offer a variety of classes that are designed to help you understand and care for your loved one. Most programs have support groups and social media sites available for patients and caregivers. You may find becoming involved in such groups helpful and comforting. Developing a good relationship with your transplant coordinators, the nursing staff and transplant team is important. The transplant social worker will help you in a variety of ways, such as finding housing; assisting with social services, financial grants and foundation support; and offering therapeutic support groups and counseling sessions for patients and caretakers.
You will be required to transport and assist your loved one during their evaluation, follow-up appointments and testing before the transplant. During the evaluation, the center will explain its program and policies to you. Regular clinic visits will include pulmonary function tests, x-rays, and blood work, which are usually taken prior to seeing the doctor. It can take hours for the results to come in, so having snacks, a good book, craft or activity will help make the day go by faster. Walk around and explore the facility, and look for any green spaces or step-away places to visit while you are waiting.
As the patient’s health declines and he or she moves closer to transplant, the frequency of appointments and hospitalizations will increase. Your loved one may face a series of life- threatening situations. Understanding what to expect, developing a good relationship with the nurses and coordinators, trusting in your team’s treatment plan, and discussing legal documents that cover end-of-life contingencies are important steps during this time.
CAREGIVER’S ROLE IN NUTRITION
Perhaps one of the greatest strides in the past two decades for patients is the increased focus on diet, physical therapy, strength and endurance exercise programs. Most centers require patients to exercise and to be as active as possible pre- and post-transplant. Many centers have pulmonary rehabilitation facilities and programs with well-trained pulmonary physical therapists and nurses who work diligently to maximize their patients’ strength and endurance through cardio and muscle building exercises. These exercises can bring a feeling of wellbeing and accomplishment to the patient. Although your loved one may be hungry and exhausted when they finish, patients often reap physical, mental and emotional benefits from exercising. They should always seek advice from their team about what physical activities they can handle.
Having a healthy diet and good nutrition are important in maintaining weight requirements, blood sugars and possible side effects from medications. Nutritionists will guide you and offer suggestions for making delicious, healthy fare. Understanding and learning to prepare meals and snacks that are rich in vitamins and proteins will benefit both you and the patient.
Be prepared for changes in mood and behavior. Chronic illness, the progressive worsening in breathing function, the uncertainty of the future, loss of independence, fears of the surgery and outcome, medications, fatigue and stress, pain, and discomfort can cause your loved one to become depressed and angry, even belligerent. Encouraging them to be as active and independent as possible will help them regain a sense of self-reliance and confidence. Ask for help when you need it. If keeping a positive outlook is difficult for you, seek help and support. As one charged with such intense duties, you may feel isolated, which is not uncommon among caretakers. The constant stress of appointments, long days at the clinic, hospitalizations, and your loved one’s underlying life-threatening illness can take a toll. To offset some of the stress, take a reprieve from your caretaking responsibilities, stay physically active, take time to do an activity you enjoy, walk, meditate or pray, eat well and rest. Make time for yourself and your personal needs.
THROUGH THE TRANSPLANT
Once you receive the call notifying you that lungs are available, you will go to the hospital, where you will wait while the team examines the donor’s lungs. Sometimes the lungs, upon closer inspection, are not viable and the transplant will be called off. This is called a “dry run” and it is common.
While your loved one is waiting for the word from the transplant team – often for several hours – you can be with them while they wait. Tap into your strength and resources to stay calm, confident, positive, hopeful, strong, and supportive.
After surgery, the patient will be unconscious and on a ventilator in the medical Intensive Care Unit of the hospital. If you’ve never seen your loved one in this condition before, you may feel overwhelmed at first. Patients are placed in an upright, almost standing position in the hospital bed, and there will be chest tubes, catheters and other equipment connected to your loved one to monitor their vital signs. The transplant recipient will be monitored very closely for the first 48 to 72 hours, and visitation will be limited to certain times of the day and restricted to a certain number of people. Having one or two close family members with you is helpful, but ask other visitors to wait at least a few days before visiting until the patient stabilizes.
Some patients have complications that delay their extubation, but once the patient is off the ventilator, stabilized and stronger, they will be moved into a step-down unit. Most patients will be hospitalized for two to three weeks. In the weeks following surgery, the transplant recipient will be most vulnerable to illness and infection because the immunosuppressant medications will be at their highest doses. A common cold or virus can cause severe problems. Therefore, it is important to limit visitors, wear masks, and allow the patient to rest and recover.
Once discharged, the transplant patient who has relocated will have to stay in the area to recover and rehabilitate and will have frequent follow up doctor’s visits and tests. Your role as a caretaker can become more challenging as you manage the post-transplant protocol. Your loved one may have short-term memory loss or lack of their full cognition at first because of the transplant medications. You will need to assist in administering medication and monitoring blood pressure, blood sugars, and pulmonary function. Post-transplant medications affect each patient differently. Be observant and note any changes in mood, energy level, and breathing function. If you have any concerns, call your transplant coordinator immediately.
The number of post-transplant medications and medical supplies can be overwhelming and can soon take over your home. To free yourself from the chaos, you might try:
• Creating closet space to house everything.
• Labeling photo boxes to put supplies in.
• Putting pill cases away immediately after use.
As your loved one begins to heal, he or she will begin to soar, free of oxygen and illness, and be able to breathe freely. This is a fun time to learn new physical activities and hobbies to build stamina, strength and energy. A new world will be at your loved one’s disposal. Recovery can be a wonderful time filled with the promise of a healthy life, so embrace it fully. Just make sure to always keep safety in mind: Avoid crowded places, wash your hands regularly or use alcohol hand gels, wear masks when appropriate, and know when to rest.
Long-term post-transplant complications are common. Rejection and infection can occur at any time. Side effects of the immunosuppressive medications include nerve damage; renal and kidney problems; allergic reactions; cancer; and diabetes. Be acutely aware of any changes in your loved one’s appearance or demeanor. A slight temperature and even minor flu-like symptoms need to be reported and treated immediately.
As a caretaker, this is the time to embrace, be present, and be loving, kind and patient with yourself and your loved one. Know that you are in a situation in which you cannot control the outcome; but you do have control over how you handle yourself and each situation that arises. Staying centered, caring for your own needs, asking and graciously receiving assistance, adopting healthy diet and lifestyle habits, and making the absolute best of each moment will help you manage the stress of caregiving physically, mentally and emotionally.