My Transplant Brother
8/5/2014 9:40 AM
By Lorelei Hill
Last month, my husband Mike and I made our customary drive into the heart of Toronto to attend a 15-minute doctor’s appointment. I am sure that every CHD patient can relate to the long process of visiting their cardiologist. More often than not, it’s a hurry-up-and-wait game that involves blood tests, X-rays or ECGs and finally, what we came for—the face-to-face meeting with the cardiologist.
I hate to admit this, but over the years, these hospital visits have become such a habit that now, on those rare appointments where there are no tests, I almost feel let down. I mean really, what’s the point of travelling all that way just to see the doctor?
That was the topic of my conversation with my transplant brother Demetrios last night. With his family living just outside of Toronto and mine living on Lake Huron, we rarely get the opportunity to see one another. For over a year now we have been planning to get away together and just chill. Packing up our families, our camper, and our dog, we have arrived at a beautiful campground in eastern Ontario for a much-needed weeklong gathering. Demetrios and wife Maria have arrived with two-year-old son George and Maria’s mother, Apolina. Since we are staying in an area very close to where I was born, my family has invited a bunch of my family and friends to join us throughout the week.
Last night the adults and my big kids made s’mores over an open fire while George slept soundly inside. For the first time in quite a while, Demetrios and I discussed all that we had experienced over the course of our lives. Meeting immediately after transplant, we quickly learned to turn to one another for support and advice. I was there a year later when the aorta in his new heart crumbled and Demetrios had to go back into surgery for a second transplant. He was there calming my family and making jokes when my brain infection put me back into critical care. “This isn’t a competition,” he teased, when against all odds I opened my eyes and began speaking again.
While our conversation last night remained light, its underlying nature was not.
“I’m always hot inside and cold outside,” I tell him. “That’s the prednisone,” he says casually. “So am I.”
“Why do people who have never been sick tell me they know how I feel?” he wonders.
“It’s just their way of relating,” I say with equal casualness.
Unlike Demetrios, who became a cardiac patient after surviving cancer, for me, becoming a transplant patient hasn’t really changed my life. Now, I am a cardiac transplant patient with all of the hospital visits, tests, and medication schedules I have been accustomed to my entire life as a congenital cardiac patient.
Though the medication and tests are slightly different, and much more regular, the drill is not. The worst change would have to be my infection level. All of the medication necessary to keep my body from rejecting this new heart also puts me in the position of being highly susceptible to infection.
Having said that, being a transplant patient has been a freeing experience. I have much more energy than I had pre-transplant. Furthermore, I have the pleasure of being part of a healing family. Dedicated doctors, nurses, and technicians consider patients a part of their team. Together we work towards one goal—keeping us all alive. Love, gratitude, and huge respect for every member of this highly talented team runs both ways. These specialized individuals do their best to put our needs first. They understand that we are mothers, fathers, children, siblings, and friends.
Sure, there have been times when they have us to do things we really don’t want to do. The costs and time expenditures required to maintain constant care for a transplant recipient can at times be taxing. When feeling so much better many patients begin to wonder if the time and hassles of these regular check-ups are really all that necessary. For Demetrios and me, they are.
Like any cardiac patient, it’s our job to listen to the wisdom of the doctors if we are to get well and stay well. My transplant brother and I agree, without the wisdom and expertise of our cardiac transplant team neither one of us would be here. As two families who have been through the fire and back, we have seen firsthand the need to keep that 15-minute appointment. Some days, it may not be for any other reason than to stand in front of the team and say, “I’m here.”
Hello from Ontario, Canada! Lorelei Hill is a mother of two CHD babies, wife, writer/teacher, and a survivor of tricuspid atresia. After graduating with honors from Queen’s University in Kingston, Lorelei went on to teach and travel the world. Now settled into small town life, she is working with other CHD patients and her own cardiac specialists to complete a self-help book for young CHD families, entitled From the Heart. Click here to visit her website.