Transplant evaluation can take days and stretch into weeks. From routine blood work to EKGs and other exams, an individual must endure test upon test. One then must add the numerous assessments by cardiologists, urologists, transplant surgeons, doctors specializing in the particular organ that is failing, and others. There are meetings with individual members of the transplant team, including nurses, transplant coordinators, social workers, and financial specialists. Finally, there are educational sessions introducing the potential recipient and others to the basics of the transplant process and what to expect both before and after the surgery.
“Jose and Delia”* traveled to Houston from El Paso by bus so she could be evaluated for a kidney transplant. They could not afford to stay at a hotel, so they slept in the lobby of the hospital. A compassionate soul in housekeeping wanted to help, so she opened the door of an office so they could have a quiet place to sleep. Their story was uncovered when Delia developed a rash from sleeping on the floor.
During treatment, patients and family members who reside outside Houston must cope with their need for shelter. Some make creative but difficult choices. Every transplant social worker has stories of those who have slept in their car, in the patient’s hospital room, or in a waiting room.
“Fred” was found sleeping in the garage on the ground in a parking space until a security guard found him and made him leave.
“Isaac” slept at the Greyhound bus terminal downtown.
“Joanne” spent 185 nights sleeping in a hospital waiting room while her adult daughter was hospitalized for a simultaneous lung and liver transplant.
Hospital social workers find some of the saddest stories among those whose loved ones are transported by an ambulance or emergency helicopter from a smaller hospital nearer their home.
Ralph’s wife, Judith, came by emergency helicopter transport to Houston when she needed a heart transplant. He was found sleeping in a different waiting room each night while Judith was treated in the intensive care unit. He had no resources to secure any other place to stay.
Follow-up after a transplant requires at least six weeks in which patients are closely monitored for any sign of rejection or infection. The level of anti-rejection drugs in the patient’s blood is watched carefully, and adjustments to the dosage of these life-sustaining medications are made regularly. These initial weeks of follow up are critical to the success of the transplant and to the life of the patient. Patients cannot drive for at least a month after surgery, and coming back to Houston for post-op care can be a major hardship.
A resident of Baton Rouge, Louisiana, “Bob” just stopped coming for his scheduled lab and clinic appointments. When questioned by a social worker about his failure to keep his appointments, he simply replied, “Is the hospital going to pay for my motel room?”
Patients are not allowed to drive for a month following their surgery, and finding a volunteer to drive to Houston twice a week – at over 200 miles round trip-- is difficult for many.
“Tamika” traveled from Bryan/College Station –100 miles from Houston – for labs and clinic appointments twice a week. She arrived early in the morning to have her blood drawn before breakfast and her morning medications, and she stayed for a mid-afternoon follow-up visit with her doctor. Then she traveled home, exhausted from her long day while still recovering from transplant surgery less than one month before.
Innumerable patients share Tamika’s story.
*Although the names are fictional, these accounts are true.