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Kidney recipient, Jerry Connor (right) |
Educate yourself and do not lose hope. Let others know what you need.
That was the wisdom offered by two panels of patients and living donors at Patient Education and Support meetings recently.
“What Was It Really Like? A Post-Transplant Panel” was the topic in November, and featured four recent organ recipients. In January a similar panel covered the topic, “Quiet Heroes: A Living Donor Panel Answers Your Questions.” Both sessions drew the largest turnouts of patients seeking this kind of information in recent memory.
Realities of Transplant Surgery
John Burke had a double lung transplant in 1999 as a result of cystic fibrosis that was diagnosed in 1965. After more than a year on the lung list, his first call from the hospital was a false alarm. As most transplant recipients know, false alarms are not unusual and a second call, at the early hour of 2 a.m. was the one that summoned him to Baltimore for surgery.
John’s hospital stay was 30 days because of an intestinal shutdown, but once released, he returned to work the next week. He noted that he had a small rejection episode and was hospitalized one day for that. A virus caused the rejection and he was given an intravenous treatment for it. He now feels as if he is 20 years old again. Last fall he became a newlywed.
Barbara Hope, three months post transplant at the time of the panel discussion, looked the picture of health. She received a living kidney donation from her friend Lori Owen. She had lived with her polycystic kidneys since birth, but just a year ago she had to begin dialysis three times a week. Barbara felt that dialysis was an unacceptable lifestyle and began to investigate living donation. Her husband could not be a donor.
As news of her situation spread among her friends, three asked to be considered as donors. Lori was the friend who was compatible with Barbara and the surgery was scheduled for early August. Barbara spent no time in intensive care, and within 24 hours was eating regular food. She went home within four days. She said the advantage of living donation— that she was not devastatingly ill and that she could schedule the surgery at a convenient time—made the difference in her outcome.
Hepatitis B kept Marvin Sawyer from working. His physical condition continued to deteriorate. Living donation was considered, but his case quickly became urgent. Marvin says he is doing well post-transplant and experienced no rejection. Once discharged, he had to undergo physical rehabilitation because of the lingering effects of the disease upon his body. He said that even walking was difficult in the early days of recovery. Marvin has a gentle and optimistic spirit and continues to be grateful for a second chance in life.
A three and a half year wait on the heart transplant list was what Rob Jolen faced when he was listed in 1998. He had neopathic cardiomyopathy. His heart was pumping at only 10 percent capacity.
He said he had no stamina and was unable to continue in his job. A defibrillator was implanted as a back up to his heart.
When he woke up from the operation in ICU, Rob was thrilled that he had made it through successfully. Within two days of surgery he was walking and nine days later was at home and cooking dinner.
All panelists said that that they experienced the highs and lows, the roller coaster of emotions transplant patients go through both before and after surgery. Each individually mentioned attitudes of hope and determination that kept them going.
They recognized they had to hang tough and see the process through to the end; they had confidence they would make it.
The Decision to Become a Living Donor
The Decision to Become a Living Donor
“I was excited by the prospect of surgery,” said Ammie Conner at the January session. She donated a kidney in a double swap operation so her husband, Jerry, could receive one from another donor-recipient pair. Her kidney went to a man in Virginia and Jerry received a kidney from the man’s wife. “Now there are four of us living with one kidney, but everyone is healthy and doing well,” Ammie said happily. The two couples have since shared a family reunion and spend some holidays together.
“How do you go about asking a person to become a donor?” an audience member wanted to know.
Barbara Hope acknowledged it is difficult to ask people. Her husband was found to be an incompatible match for her. Her friend, Lori Owen said it was not a difficult decision for her to donate, that, “I just decided I want to help Barb.” Her family understandably had mixed reactions at first, but all came to see her gift as a generous action.
Barry White had no hesitation deciding to give his brother Doug a part of his liver. Doug was in declining health while still in his 30s. He had been on the list for two years. “My life was nothing,” he related. He looked forward to the surgery, too.
Barry, however, while firm in his conviction to donate, admitted that he had concerns just before surgery. Post-operatively, Barry needed pain medication for several weeks and had anemia that eventually improved. He was back to work in five weeks.
The panel explained that the evaluation process for living donation is rigorous. If donors pass all the medical tests, they can be assured they are in excellent health. The medical team does not permit this surgery if someone is not up to the operation.
Each prospective donor goes through a series of exams that include initial blood work to determine compatibility, and a one day work up that includes x-rays, CT scans pulmonary tests, and other evaluations. They also see a psychologist. Most kidney donor surgery lasts about four hours, while Barry’s liver donation operation took 11 hours.
Panelists related that each person in the transaction has his own physician do the work up.The physician does not meet the intended recipient so as not to color his judgment on the fitness of the donor.
Ammie Connor summarized her experience, “We were very well cared for. There is true caring here. The Hopkins team has our heartfelt and undying gratitude.”
