Nobody Does It Alone
-- Paula C.’s Story

Adult Kidney Transplant Recipient and Donor

Paula C. is a 61-year-old woman who received her liver transplant at the University of Miami Medical Center in April 1995. Unlike most adult transplant patients, Paula’s condition was not chronic, but was caused by an automobile accident.

Paula’s primary caregiver is her daughter, Connie, who was driving at the time of the accident. Connie’s father (Paula’s husband) was killed in the collision, and she therefore feels extremely responsible for her mother’s condition and care.

Both Paula and Connie acknowledged that there is limited structured support for transplantees and their families. The primary and best support they found came from others going through the same process. They said they learned the most from speaking with other patients and their families as they congregated in various waiting rooms.

Paula wore her beeper for six months. After she was on the waiting list for about five months, Paula developed toxic pneumonia. She spent two weeks in the hospital and she was pushed up on the organ waiting list due to the severe deterioration of her condition which result from the pneumonia. In other words, she had to become sicker in order to get an organ, but her weakened state also negatively affected her chances for recovery.

Overall, Paula’s transplant experience was a good one. From the time she was first referred to the transplant center at the University of Miami Hospital until she was placed on the waiting list was a total of just two months, during which time she was undergoing various tests to make sure she was a viable candidate for transplant. She did not find this period excessive, although it was quite stressful. Paula said her medical care was excellent, and that she was kept apprized of what was going on. She also did not have to worry about any of the costs as she has an excellent medical insurance plan which covered and continues to cover most of her expenses.

She felt that the care she received was excellent and that the counseling she received was adequate. This is illustrative of a common attitude among transplant recipients: they are just so happy to be alive and relatively healthy that they are not going to quibble or find fault with the little things.

The worst experience Paula and her family had during those six months of waiting was the "false alarm." Paula's beeper went off at four o’clock one morning. Paula and Connie rushed to the hospital, where Paula was prepped. Then they waited, and waited, and waited -- for a total of 14 hours. It turned out there was a liver, but it wasn’t a good match. Ultimately, they were sent home. Paula and Connie both said that the worst part of this experience was the lack of communication from the transplant team. During those 14 hours of waiting, no one from the transplant team came to talk to them about what was going on, and it was very frustrating for Paula and her entire family.

Three weeks later, Paula was beeped again. This time, the liver was a perfect match, and the transplant proceeded without any hitches.

Whereas Paula’s reaction to the people she came in contact with was very positive, the same was not true for Connie. Connie said there was a transplant coordinator, but she was so overworked there was little personalized attention. Connie also felt that there was no family counseling to speak of and that all the information she needed she had to acquire on her own. Although she lauded her mother's doctor, she felt that "personalized service was lacking. Everybody was so busy. There just weren’t enough people." This perception may or may not be true, but it is certainly a common one expressed by the family members of transplant patients.

For Paula, the hardest part of the experience was the follow-up care regime. She had to travel to the clinic three times each week immediately following her surgery when she was still just recovering and very weak. She had to show up at 6:45 a.m. and get in line. Then she had to wait to see the doctor. Then she had to wait another six hours for her test results (so the doctor could advise her on any adjustments that were required in her medications) before she could go home. This often equated to an eight or nine-hour day for a woman who had just gone through major surgery. She found it exhausting -- both emotionally and physically.

Paula is now active, happy, and as healthy as can be expected. She has her medications down to a regular routine which no longer disrupts her life, and she considers herself incredibly blessed.