Remembering the Families of Transplant Patients

By Debbie DiMartino

I had become quite familiar with Mrs. M since her husband was placed on the liver transplant list at Rush. He had been in and out of the hospital multiple times for the many complications of liver disease we commonly see. He suffered all of them: life-threatening bleeding from the upper GI tract, ascites, muscle wasting, kidney failure and chronic encephalopathy, or state of delirium caused by the liver’s inability to clear toxins.

Not knowing his age (early 60s), I would have guessed he was 75 or 80. The few conversations he could have made little sense. Some were humorous, even to Mrs. M, who couldn’t help but smirk when he asked the nurse if his dialysis catheter was really a tracking device to prevent him from escaping.

She knew this was not her husband. She probably hadn’t seen the man she knew, the man she married, for six months or so, since before the cirrhosis took over. Yet she spent every day at his bedside. Even when he was well enough to leave the hospital (or more appropriately, not sick enough to stay), a nursing home was not acceptable. She was his 24-hour caregiver. His life outside of the hospital depended on her. It was the least she could do while she waited and prayed for that one phone call.

Even in the hospital, she was indispensible to his care. Whenever she left the room, he would immediately pull out his feeding tube. Six times we had to replace it, in order to give him the nutrition he needed to survive through transplant. “I hope his wife will come back soon,” we would say.

A month ago Mr. M came back to the hospital for the usual reasons -– too weak, not eating, a fluid-filled belly inhibiting breathing. This time, though, after two trips to the ICU for severe complications, it was clear that the rest of his time on the waiting list would be spent in the hospital … if he survived.  One morning while making rounds in the ICU, our team found Mrs. M, as usual, at his bedside. Her demeanor was telling. Still hopeful and trusting in our care, but knowing that for one reason or another, this man, in this state, whose hand she was holding, was not returning home.

Last Friday, I listened as Dr. Edie Chan made the phone call Mrs. M had been praying for. I tried to imagine the expression of joy with underlying fear on the other end. Dr. Chan reminded her that Mr. M was at very high risk for not making it out of the operating room alive. But this was his only chance.

A week later, Mr. M had made it through the most critical post-operative days. He had made it out of the ICU and was back on the surgical floor. He no longer needed dialysis -– his ‘tracking device” was removed. His laboratory results, as well as his clinical exam, proved that his liver was normal. He was sitting up in a chair with a lunch tray in front of him, answering questions, and Mrs. M walked in. I had not seen her since before the phone call. She was glowing with joy and relief. We exchanged a hug, a smile, and some small talk.  I remarked on his excellent progress, and told her the plan for the day.  Before I turned to leave the room, I squeezed her shoulder and said “you got your husband back.”

Those words stuck with me, as I reflected on the role of the family of a transplant recipient. My job is to care for the patient. The donors’ sacrifice is always recognized. But the third essential part of the equation is the recipient family. Every day I see their devotion to their loved one who may be a shadow of the person they love. I have already described what chronic liver disease can do to a person. It is the family that lives with it, watches it and makes sacrifices to care for and support the patient before and after transplant. Can you imagine hoping and waiting for a stranger to die? The family has no choice, for it is the only way to get their loved one back. How easy it is to forget what the families go through.

There is a lot of fulfillment in what we do for our patients. Now I realize, we do so much more for their families.

Debbie DiMartino, PA-C, is a solid organ transplant physician assistant at Rush University Medical Center.

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