My Heart Transplant Story
(I needed to write my story to share with the Child Life program at UCLA for their RUN/WALK fund raiser. I thought I’d share it with you too.)
Hello. My name is Ian. I am fourteen years old and went through the grueling and thrilling heart transplant process. I had a peaceful life, despite being diagnosed with a rare muscle disease called muscular dystrophy. My body was different and I felt bad at times. My muscles were not as strong as my friends, but they were loving friends. The affection by friends helped me get through my life. I enjoy my life. I accepted going to the doctors and working through things that not all of us go through.
It wasn’t until two years previous that the cardiologist took an interest in me. He started observing what he called, “A little wear”, “A small decline” or, “Not quite where I want them to be.” Yearly visits became every six months, then every three months, every two months to monthly to weekly. Each appointment our doctor didn’t like the way the results were trending. Summer camp was where I finally took a major dive, which led to a hospital admission. We unofficially started a journey towards transplant at UCSF, far from home.
After a week and a half on medicine they stabilized me and decided to send us home, our home in Huntington Beach. Yet it was not to be…
Before even a week could pass, I was afflicted with terrible symptoms. They were the worst I had felt yet. Closer to home with our own doctor, was another hospital, CHOC, which is where I was next admitted. My family and I lived there for a while as the doctors attempted to battle my body with medicine. Once again, it was my 103 visitors that made me feel so loved. We could not go home with a milrinone drip, an intra-venus tube in my arm slowly giving me milrinone. But my body was not taking the stress whenever they stopped the milrinone. I was like Eva from Wall-E. When they tried to wean me off of milrinone my body would shut down as the medicine wore off. I’d get tired, cold, weak, and nauseous. But when I was hooked up, I felt great! We were left with two options: to pursue transplant or find a way to get milrinone continually at our at home. Since it would be easier for UCLA to do both we were subsequently airlifted, in a helicopter. That was thrilling.
At UCLA they put in a more permanent catheter called a PICC line, not a “Pick-Up Line” like my brother likes to call it. They ran a whole bunch of tests and fed me from a menu like all good hospitals. After some tense waiting, we were accepted onto the list of names needing new necessities, in this case, organs.
After that we went home. There was an agency providing pumps at home so I could receive my medicine and wait for a heart in the comfort of my own home. Even with my continuous medicine I still had symptoms. I could not keep food down. So just like a good boy we went back to the doctors. We were admitted to UCLA again. We only had four days at home. In the hospital with more meds and constant vigilance we felt a tad more comfortable. No more going home for me. UCLA would be my new home because I needed so much medical care to keep me alive.
Now the long wait began. I am a pretty happy kid, so I wasn’t very nervous. The only cause for nervousness I had was the anticipation of my first surgery ever. That made me nervous. Actually the whole time I felt sick and knew that it was not good, that also made me nervous. Vomiting and nausea consumed a quarter of my waking hours. I developed more symptoms as my heart worked less. I had shortness of breath and strange headaches and I had a stomach ache that hurt sharply. During the night my legs would shake. It hurt. I felt achy all over. We tried little things like massage or blankets, but nothing made it go away. It did not relent because my heart could not pump strong enough to get the blood it really needed. Not my stomach so I couldn’t digest foods. Not my legs, so they fell asleep. Not my head so it ached.
Quite soon we began considering intubation or a VAD. Intubation is not super major, but has a whole slew of side affects and it has a high chance to cause pneumonia. The VAD is not anything easier (VAD stands for Ventricular Assist Device. And I would need two of them because both sides of my heart were so weak.) It involved an open heart surgery to attach the VAD. The BiVad would give good oxygenated blood all over my body which it had not been getting for months. Intubation would only give my breathing muscles and my heart a little break but it would also allow me some medicated sleep through the pain. Out of these we chose intubation. And I had a few hours rest. I woke up to suck fluids out of my throat and write my thoughts. The tube in my mouth restricted me from eating and talking. I wrote what I wanted to say on a white board.
Through the 81 days of heart failure I wrote my thoughts into a blog. I am a novice and have no grammar skills at all, yet I enjoyed that writing. I couldn’t leave the hospital to share my testimony with people. But my blog could and this brought me joy when I was confined and voiceless. You can read my posts at IansHeartbeat.wordpress.com.
Living in the hospital for so long and being so powerless over choices and what would happen to one’s body could drive anyone crazy. But not me. UCLA Mattel Children’s takes very good care of their own! Doctors, Nurses, Social Workers, Dietitians and Chefs helped take care of my body every day. I liked the cooks when I was able to eat. They even remembered me when I started ordering food again. Remember, I stopped eating for a few weeks when I was nauseous all the time. I think they missed me. Massage therapists came to comfort me, four of them at once one time! But Child Life came every day to help me feel like a regular teenager. Child life was very encouraging. They came to visit my room every day even when they were short staffed. I liked the visits from the volunteers that would teach me a new word for the day, like “ubiquitous, soliloquy, paraphernalia, or intrepid”. Child Life helped me pass the time away when I was strong enough to go to the teen rooms. I was at three different Hospitals all with a Child Life program, all with an Air Hockey Table. I played with my friends and family. It was like I had my own living room where we could hang out when they came to visit. I felt like a regular teenager winning at something. I could beat all of them with one hand and an IV pole connected to the other one. Either all of them are not very good, or I’m an Air Hockey champion. Pretty soon this became an indicator of how well my heart was working. I could play three games in a row before I got tired and had to go back to my room. I would feel fatigued and icy cold. Eventually I could play only two, then one. Then none. I felt so terrible, I didn’t even want to be pushed in my wheelchair to the patio at Child Life.
My 7 year old sister makes me happy. But she didn’t like the long drive or the long wait in my hospital room. I know she loves me, but she would come when she could play at Child Life. Nobody told her to get off the dirty hospital floor or don’t touch this or don’t touch that. She and my little cousins always came back happy with crafts to hang in my room. They covered their faces in colored masking tape and made mask art for me. Billy, Bob, and Joe hung in my room to keep me company. That made me happy too.
Child Life should change its name to Family Life or something because they really helped all of us. Mom was living with me in the hospital. When I was sleeping and my mom had nothing to do, she would go to Child Life, have coffee or tea, sit in the sunshine, or do art that really made her happy. She would go to Child Life and make beautiful crafts. They provided materials for her to use her imaginative spirit when I was feeling bad and it made her happy. All the things my mom created through child life were beautiful, brightened up my room, and made it seem more homey. It brightened up her spirit too and helped her relax. Keeping her happy was very important. There were times she was feeling stressed out. After coming back from Child Life, she’d come back feeling jovial again. Happy Mom, Happy Me!
Continuing with intubation, I wrote what I wanted to say. During intubation I was so thirsty. I bet I wrote that on my white bored a thousand times. In those darkest of moments the NP walked in with news. A heart was here. It was for me. It was in peak condition and we could go down for operation right now. The only thing I could do was smile with my eyes, and shake myself. I was the most delighted I had ever been. Not even at my uncle’s house was I happier. I just prayed a prayer,
“Thank you God, I am so happy!” over and over again.
I learned lots about medicine and plenty about hospitals. I figured out how to order what I enjoyed most at each hospital. (Juk and 5 orders of bacon at UCSF. Cheese enchiladas at CHOC. Open faced turkey sandwich with gravy at UCLA.) I learned, most importantly, the value of having a family and church body to go with you through tough times. I never before knew how much I was loved. (I also noticed how many people like to point to the other and say, “You are so loved”. Only one or two people actually said “I love you.” I know people do love me I just found this funny and amusing.) Yet nothing compares to learning what true peace and true happiness feel like. That was the most important lesson I learned. It’s not like the happiness and peace on Christmas morning, but a taste of what it might be like to be in heaven.
Rolled out before me is a life to live, but I can never forget the endurance and intrepidity of the young men and women fighting for their lives in the hospital. I know that we are all dying even those not in the hospital. I live to bring the news of the Lord the best I can, but right now as I remember the valiance required to survive life in the hospital, I have seen all I can say is this,
Come soon Jesus.