Today marks International Transplant Nurses Day, an annual day set aside by the International Transplant Nurses Society to raise awareness of the work done by these unique healthcare professionals. Here's the story of how UPMC's transplant staff helped one family.
In March 2012, our daughter Valerie announced she would get married in November in Brazil, so we set to work to make it possible for our other daughter, Karis, to attend the wedding. Karis had grown up in Brazil, but hadn’t been “home” for five years. Complications of her multivisceral (five-organ) transplant had kept her in Pittsburgh, but by faith we bought airline tickets for Karis along with the rest of the family.
The first challenge was documentation. Karis’ passport and social security card had been lost somehow when she was called from Notre Dame for her transplant in Pittsburgh. She had never been well enough to obtain a driver’s license. She no longer had an original birth certificate. And Karis would need a tourist visa, since she had lost her Brazilian permanent residence visa by being gone from Brazil for so long. All of this took almost six months to secure. Finally, in September, Karis was able to tell Valerie that she had received her new passport, stamped with a tourist visa for Brazil. The whole family celebrated!
Meanwhile, the intestinal transplant team at UPMC Montefiore did everything possible to prepare Karis medically for making the huge trip to Brazil. Karis’ health was so fragile that there was a long list of things that could go wrong. The doctors we contacted in Brazil did not want to assume responsibility for her. UPMC’s Dr. Guilherme Costa, however, believed in her dream and was able to make contact with a transplant surgeon in Brazil who agreed to be on call for her during her week there. Several weeks before the trip, Dr. Costa began to methodically “boost” her in every way possible so that she could be strong enough for a week away from the medical resources she depended on in Pittsburgh.
Many questions swirled around preparations for the trip to Brazil. What would it be like to see old friends again after so many years and so many changes in Karis’ life? What would she wear? The central line in her neck was literally her “lifeline.” What fancy dress could she wear to the wedding in the heat of Brazil that would disguise her catheter? And what nice shoes could accommodate the brace she depended on for walking? How would she stay hydrated? How would she get around in a non-wheelchair-friendly environment? Would she still be able to communicate fluently in Portuguese?
Everyone at UPMC Montefiore seemed to know that Karis was going to the wedding in Brazil, and shared her excitement. We made lists of the necessary medical supplies. Her home care provider ensured that deliveries would be made in time to pack appropriately, including TPN and medications that required refrigeration, and to distribute the weight among family members’ luggage allowance. We would fly out Nov. 12 after a final checkup with Dr. Costa that morning.
Everything seemed to be coming together for the great adventure!
But on Nov. 8, Karis climbed some steps supported by her aide and lost her balance.
At first she didn’t think she was seriously hurt. Over the next hours, however, what seemed to be just a small bruise became a major hematoma. Pain grew intense that night, and she went to the emergency department at UPMC Presbyterian. By then her leg was enormous: She had bled out a large part of the blood in her body. Over the next three days in the transplant intensive care unit, she would require six units of blood as well as multiple units of plasma, platelets and cryo to get the bleeding under control. One thing led to another: her kidneys took a hit from the massive dehydration; her leg became infected; then she developed pneumonia. Karis had to spend the entire next month in the hospital..
While the rest of the family left for Brazil, Karis’ aunt came to stay with her at the hospital. Karis’ disappointment was as huge and painful as her leg.
Sensitive to the enormity of this loss for Karis, the nurses on 12 North began to think about whether she could somehow participate in the wedding from her hospital room. Conversations began with people in Brazil about live-streaming the wedding. The family in Brazil was able to hire people to do the filming and to set up an internet connection at the retreat site where the wedding was held.
Meanwhile Marcia McCaw, head nurse on 12 North, became a wedding planner! She was able to reserve the auditorium at Montefiore so that Karis could watch the wedding on a big screen, aided by technicians from the hospital. Marsha arranged for a lovely catered buffet, complete with a gorgeous three-tier wedding cake, punch, small intimate tables and beautiful tablecloths. She even had a cookie table! Marsha helped Karis and her aunt invite people from the hospital, and arranged for free parking for any of Karis’ friends who could come on short notice to watch the wedding with her.
Shortly before the wedding, Valerie talked with Karis from Brazil via Skype. The internet connection was working! Extra help was provided on 12 North so that Karis could dress as if she were actually going to the wedding. When she was wheeled into the Montefiore auditorium, Karis discovered about thirty friends and hospital personnel gathered to share the wedding of her little sis five thousand miles away!
Was it the same as being there? No. Nothing could substitute for missing this special time with family and friends. But beyond doubt, it was the next best thing! It was so much more than Karis could have imagined as she lay in the emergency room knowing that her long-anticipated trip to Brazil had been thwarted. Karis and our entire family are deeply grateful to Marcia McCaw and others at Montefiore for their creativity, caring and generosity, allowing Karis to participate in her sister’s wedding in such a lovely and memorable way.
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