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By Janet Hiller
Janey Hiller Reads Her Autobiographical Essay About Coordinating Kidney Transplants, "Coolers"
Janet M. Hiller, R.N., M.S.N., is a certified clinical transplant coordinator for the Incompatible Kidney Transplant Program, Johns Hopkins Medicine.
It’s 1978, evening shift in the ICU in a hospital in north Philadelphia. My patient arrives from recovery room, just had a kidney transplant. The surgical resident pulls up a chair next to the bed where the foley bag is attached and stares. The bag is filling with the patient’s own urine; the resident’s eyes are glowing and he says “Isn’t that the most beautiful sight?”
It’s 1980. A KIDNEY 1 procurement coordinator comes to my patient’s bedside to inquire about the patient, the family- can he talk to the family? Why? To see if they want to donate organs. Really? Where will they go? Here, across town, across country, across oceans – it all depends. Amazing.
It’s 1982. I’m working for KIDNEY 1 now as a procurement coordinator.
UNOS doesn’t exist yet.
My territory to cover is northeastern and north central Pennsylvania, a largely rural area. I’m called to Geisinger Medical Center to evaluate a patient and speak with the family about organ donation. A 7 year old had been crossing the street while selling Girl Scout cookies and was hit by a car and now is brain dead. My boss is still orienting me. He’ll do the talking, I’ll watch and listen. The family says yes. As we’re about to go to the OR, I break down. What’s wrong? I feel so bad asking this family for something so great when they just lost their little girl. “Janet,” my boss says. “You’re not asking for something from them, you’re offering them something to hold on to, to realize she didn’t die for nothing. The option of organ donation is a gift for families- you’re not taking from them.”
Two weeks later, I’m in the office and the phone rings. A woman on the other end is crying. Through her tears, she manages to tell me that she heard about a little girl whose family donated her organs and how many people had benefitted from transplants. She wants to know: “Why didn’t anyone ask me to do this for my little girl?”
It’s 1983. A kidney sits in a cooler in my otherwise sparse refrigerator. I’m now covering the metro Philadelphia area for KIDNEY 1. I’ve arranged for heart teams, liver teams, kidney teams, tissue and bone donor recovery teams to come to any number of hospitals. A typical procurement call lasts 36 hours from initial conversation with the family, managing the patient in the ICU, perfusion of the organs in the OR and finally, distributing the kidneys from my apartment. Airline schedule books are strewn around the living room – how much time do I have to make the flight? Am I out of time? Is it time to send the kidney to England, Poland, Kuwait? The kidney’s getting old; Kuwait will take it. I’ll call our contact. Finally, a courier has picked up the kidney. I crawl to bed. As I lie there, I think “I need a husband.” I also think I need coffee, toilet paper and milk. There’s no food in the fridge, only coolers.
It’s 1985. With three years of experience, I realize my emotions have a limit. I can speak with three families a week; no more. It’s too hard to see the sadness. But is it? How can I describe the immense admiration I have for these families? They’ve yelled at me, cried with me, pleaded with me to stay with their child in the OR through the surgery. They are so strong, I am so weak.
It’s been exciting, of course: flying in a helicopter to mid-town Manhattan; racing through the street to the donor hospital just as Madison Square Garden lets out from a basketball game. We’ve flown on Lear Jets with all the fancy amenities that we can never partake of, sat in the rear seat of a turbo prop plane feeling ill while we flew through a violent thunderstorm and ridden in more ambulances that I can count.
I’m on call. We take a helicopter to a community hospital in New Jersey. A 19-year-old boy’s mom has agreed to donate only his heart. Everyone thought that was a little odd. The mom told me her son’s heart was so good and she wanted someone else to have it. Back in the OR where the transplant was taking place I asked the circulating nurse if the recipient’s diseased heart had been removed yet. It’s on the back table, she says. It is? All I could see was what looked like a blob of chocolate pudding. That was a heart?! The transplant surgeon has my donor’s heart in his hands now. The contrast between the two is unbelievable. The sight of a beautiful, young healthy heart becomes an indelible memory for me.
It’s 1986. On call Monday morning, May 5th. There is an 8-day-old baby, brain dead, in a southern Missouri NICU. The parents have agreed to donate the baby’s heart to one of our babies at the Children’s Hospital in Philadelphia. I’m told I need to ask the parents if they would agree to have their baby transported to Philadelphia to the children’s center. I call them, they agree. Where is this trust coming from?
After the plane is retrofitted to accommodate an incubator, we’re off. When we get to Missouri, I find out that the Mom and Dad will be flying back with the us in the plane. My job is to stay with them. To support them. How do I do this? I’m not a mom. I’m not married. The baby arrives safely and her heart is transplanted. Despite sharing the most intimate, anguishing of moments with them, I will never see the parents again. I drive home. When did I last sleep? Is that water in the road up ahead? No, it’s a mirage. I need to sleep.
June 1986. It’s time to move on, time to rest awhile. Time to think about the future.
Fast forward 15 years to October 2000. Now, I have a husband and three daughters in my life. How about coming back to Hopkins and working with the Paired Kidney Donation Program?
UNOS isn’t there yet.
2001. Walking through the outpatient center each morning, thinking of all of this incompatible transplant stuff. Did God place me here for a reason? My daily mantra: “I’ve got to do all I can today to help the donors fulfill their desire to help someone.” This is the way to do it.
But I’m asking donors to give up their kidneys to people they don’t even know! How can I ask them this? But I remember: I’m not asking them to give up something, I’m offering them something: a way to fulfill their wish and help someone they love.
Donors are the essence of humanity. They are my teachers. They are all I hope to be.
Being a transplant nurse: I’ve loved it, hated it. I can’t give it up.
February 14, 2009. The final preparation for a Kidney Paired Donation that has evolved over the past months from a 10-way to a no-way to a six-way: I grab two coolers from my office and head to the OR.