A Personal Perspective: Lung Transplant Evaluation
A Personal Perspective: Lung Transplant Evaluation
After being diagnosed with idiopathic pulmonary fibrosis — lung scarring of an unknown cause — Judy Amendola learned that the average time of survival was three to five years. But, luckily, she’s beaten the odds. “I happen to have a longer trajectory and have surpassed the five years,” she says. “But things are coming to a head.”
When her breathing worsened, Judy’s pulmonologist urged her to consider transplant and be evaluated sooner rather than later due to the many tests and time involved. Lung transplantation is designed to offer patients with end-stage lung disease and respiratory failure some hope of a meaningful extension of their lives.
After considering the pros and cons for well over a year, Judy decided to commit to surgery. “I feel like it’s worth the gamble because I’m relatively young in mind and body, I’m active, and I have purpose,” says the 66-year-old. “I’m very lucky and grateful to have the support and good insurance that have allowed me to consider transplantation.”
Choosing a Transplant Team
The first decision Judy had to make was where to have her lung transplant evaluation. She wanted to stay in the Boston area, where, fortunately for her, she had a number of choices.
She discovered different transplant teams have different personalities and cultures. “The way they deal with the human factor varies,” she says. “And each medical center has its own eligibility criteria for transplants.”
After meeting with transplant program directors and learning more about their programs, Judy chose Massachusetts General Hospital (MGH) as her transplant center. The next step was finding out if the center’s dedicated team would consider her a good candidate for lung transplant.
On day one of her comprehensive evaluation at MGH, Judy met with the numerous members of the lung transplant team. The roll call included a pulmonologist/surgeon, transplant coordinator, transplant nurse, nutritionist, physical therapist, transplant educator, social worker, pharmacist, and financial services representative. She also met with a variety of other medical specialists — an endocrinologist, hepatologist, cardiologist, neuropsychologist, and thoracic surgeon.
“I was anxious the first day,” says Judy. “It was the first time the words ‘end stage’ were spoken. I wanted to get in and know right away where I stood. However, if it’s not an emergency situation, the evaluation process can take a lot of time.”
Judy was asked to bring all her medical records to this initial meeting with the team. These included her medical history, a list of current medications (and any supplements and herbs), previous lung x-rays or CT scans, and a timeline of lung-related symptoms and any hospitalizations. She was also asked to provide results of previous routine health screening tests, such as dental exams, mammograms, Pap smears, and colonoscopies.
Navigating through the maze of corridors at MGH was challenging, Judy said. Just traveling from appointment to appointment on day one proved energy sapping. Although she resisted using a wheelchair in the beginning, she eventually gave in and let family members push her.
Accompanying her that first day were her brother and two sisters, key members of her support team. To thank them for taking the time to travel to Boston and be with her, she took them all out to lunch. Having a fun lunch together also turned out to be a good way to decompress.
“I felt really overwhelmed on the first day, but I was optimistic,” says Judy. “I turned to my family and said, ‘I could do this!’”
A lung transplant evaluation consists of a battery of tests with nearly a dozen care providers and can last anywhere from days to months, depending on how urgent the situation is. Potential recipients are checked for serious diseases, such as liver, kidney, and heart disease, that might decrease the chances of a successful lung transplant.
During her multiple — month evaluation, Judy underwent a myriad of medical procedures consisting of:
- blood tests — blood type, tissue typing, and blood tests to evaluate general health and forbidden drug or nicotine use
- lung tests — pulmonary function test, spirometry test, and a ventilation/perfusion scan
- heart tests — electrocardiogram (EKG), cardiac ultrasound, and cardiac catherization
- digestive system tests — gastric-emptying swallow and barium swallow
Other imaging included a chest, abdomen, and pelvis CT scan with contrast to look for any tumors, infections, or other problems. To further assess her cardiopulmonary function, she performed a six-minute walk test and other physical tests in the pulmonary rehabilitation department. And, because she’s older than 65, she was required to have neuropsychology testing to check for any cognitive impairment.
“All the testing can trigger anxiety,” Judy says. She found herself frequently checking email for results of tests as they trickled in, wondering if she would need to have a follow-up test, or if she had heart disease or liver dysfunction. In retrospect, her advice is to wait for professional comment, since variations from ‘normal’ may not be significant.
Adding to her stress was loss of time with family and friends while preparing for and going to appointments in traffic-riddled Boston. Even the valet service at MGH seemed to require energy she lacked. Public transportation was not an option, because of exposure to germs. So, as time went on, she decided a ride service was her best option.
During the evaluation process, the transplant team arrives at a lung allocation score (LAS). Unlike other transplants, which award organs based on time on the donor list, lung transplants are largely based on need. Patients with failing lungs have priority over those who are still relatively healthy. The United Network for Organ Sharing uses a computerized matching system that also takes into account physical size, blood and tissue types, and drug or nicotine use.
A System of Support
Fortunately, Judy has a number of family members able to provide physical and emotional support before, during, and after her lung transplant. Throughout the evaluation process, this supportive network communicated with the team, attended educational meetings, and provided cheer through humor and handholding when needed. After the transplant, their jobs will be to chart Judy’s progress, help her manage the many medications, and be alert for possible clots, rejection, or infections. Her daughter has volunteered to take a break from medical school and fly up from New Orleans to live with her. She’ll go along to the numerous medical appointments during the critical first month or more of what will be a year-long recovery. Subsequently, her brother will come from Virginia to live with her. One of her Massachusetts sisters, a young family friend, and various others will give these primary caretakers weekly respite. Judy has relayed her end-of-life wishes to her caregiver group in case the transplant does not go well.
In addition to support from her family, Judy attends both formal and informal support groups. Although not always a fan of such groups, she says, “It’s been an outlet for my interest in advocacy. I feel I can change things for the better for future patients.”
An Informed Decision
Doctors often describe a lung transplant as a tradeoff — trading a worsening, incurable disease for a possible extension of life but with unknown complications. As a result of taking immunosuppressive medications to prevent rejection, patients face increased risks of infection and cancer.
During the evaluation process, the transplant team prepared Judy for what life after surgery could be like. At least one hospitalization, she learned, is common in the year after transplant, and less frequently thereafter. Post-surgical complications may include blood clots, organ rejection, infection due to immunosuppressant drugs, kidney damage, possibly requiring dialysis, or swallowing reflex problems, sometimes necessitating long-term use of a feeding tube. Increased survival following lung transplantation comes with the risks of lung cancer and kidney failure.
Besides health consequences, Judy and the team members discussed financial and legal matters, such as medical and drug insurance coverage, power-of-attorney, wills, and trusts. In addition to a health care proxy to appoint a health care agent, they recommended signing a Massachusetts Orders of Life-Sustaining Treatment (MOLST) form to instruct other health professionals about the use of life-sustaining treatments.
“You are weighing the current quality of your life versus the unpredictable quality and length of life post-transplant,” says Judy. “I had to decide given the gamble, trade-offs, and challenges of lung transplantation, whether it’s the right thing for me.”
To gain clarity before making this difficult decision, Judy also talked to others who had undergone lung transplants about their experiences. She was able to obtain names of these patients from her transplant team as well as friends.
“Recently,” she adds, “I experienced several incidents that gave me visceral glimpses of the quality of life and decline that lies ahead of me without a transplant. This was the tipping point for me. Suddenly, my perspective changed and ended my deepest ambivalences about the surgery.”
Judging herself resilient enough to face potential problems after transplant, Judy has decided to take a chance. She agrees with people who call a lung transplant “a second lease on life,” but realistically she says “a lease has an endpoint.” Still, she believes her window of opportunity is now, and she’s ready to make a commitment to transplant and the hope for a longer life.