Resilience: Life of a transplant kid

One year ago this week, Athena Dieuanh Tran received her heart transplant at Lucile Packard Children’s Hospital Stanford and was one of the first patients to be moved into our new hospital. She decided to document her personal story in writing, going back several years before her transplant. The following excerpt from her full narrative offers a firsthand perspective of the years leading up to her diagnosis, her stroke, and her life from when she was placed on the transplant waiting list until the day her transplant finally came. She says the experience changed who she is for the better. We thank you, Athena, for having the courage to share your story.

Personal essay, by Athena Dieuanh Tran, written December 2017

In honor of postoperative day 14, I've decided to start writing my story. It's not a very happy story, but it's mine. Here it goes, beginning around 2014:

I grew up as a well-rounded girl in a somewhat typical Silicon Valley family. In my family of four, my parents are first-generation Vietnamese refugees. My father is a high-tech engineer-turned-businessman. My mother is a dentist. We have an active and fun life. We traveled all over the United States and some foreign countries. We’ve camped, kayaked, hiked, biked, skied, and so much more. My brother and I received good grades. My brother who is three years older than me was occasionally distracted in class and that was the only trouble my family had, up until I was in fourth grade.

Now, when I was in fourth grade, we had physical education (PE) on the first day of school. “Two laps,” said the teacher. So alongside everyone else, I started running. Halfway through, I started to feel a pain in my chest. My heart was racing. I bent over to take a breath. The PE teacher yelled at me to keep moving. I fought through the pain and finished up.

See, all my life, I had been afraid of pain, failure and my parents’ disappointment. When I got home that day, I didn't say a word about my running to my 55-time marathon-runner dad. I figured it was just an off day, since at that point I hadn't run in a while. But then again, every day seemed to be an off day. I was always short of breath and dizzy, and sometimes I felt nauseous. But I didn’t say anything. Why? Needles. They were my downfall. I was so afraid of them. I knew that if I said a word, blood tests would follow.

That Thanksgiving break, our family went out for a walk and jog at seven in the morning, and I tried to jog to see if I made some improvements. No change. I still felt like dying every time I ran. But I didn't say anything.

I made it through the summer and half of my fifth-grade school year until about January, when apparently, my heart couldn't take it any longer. I fainted on the track. Classmates and friends later described it to others as “collapsing to her knees and falling over.” I don't really remember anything. I woke up and got into a wheelchair. A teacher wheeled me to the office. Thankfully, PE was after lunch, so I blamed it on eating too little. My dad picked me up. For the next few weeks, the PE teacher had me only walking. We went back to our family doctor.  She did not find anything abnormal with me. After getting the second notice from my school, my dad took me to his cardiologist. I watched as the nurse put the cold stickers on me. They attached cords to the stickers. A pink paper came out of the printer with black lines on it. I later learned that this is an EKG (electrocardiogram).The doctor looked at the paper. He grabbed a model of the heart off the shelf. He talked to my dad first, and then he told me I might have a hole in my heart. We left with a doctor’s note for PE and drove home in silence.

Discounting my diagnosis

My dad, looking for the best doctors, made an appointment at Lucile Packard Children's Hospital Stanford. The team of cardiologists ordered an echo, short for an echocardiogram, which is a more advanced study than the EKG because it uses sound waves to detect abnormalities in the heart. It uses a gel and an ultrasound probe. When the technician reported to the doctors, the team made an immediate diagnosis. I had restrictive cardiomyopathy.

In the articles I read, it was described as “a rare disease of the myocardium and is the least common of the three clinically recognized and described cardiomyopathies” (Reardon, 2017). I was immediately put on a heart transplant list at status II. Both my parents and I were in denial, trying to downplay the concern of my disease, hoping that I would get better, because I was still feeling so healthy and happy.

We tried to keep our lives normal. We still traveled. In March 2015, a week before my 12^th birthday, we received a call. There was a heart available. Most people would have screamed, laughed and cried, knowing there was a chance at a new life. At this point, I was just afraid. My family and I, thinking I was still healthy, declined the heart. This later turned out to be one of the worst decisions we have ever made. We were taken off the transplant list for a little bit.

I was happy and healthy throughout 2015 and 2016. I sat out during PE class and helped the PE teachers. I had monthly checkups at Packard Children’s, and I seemed to be fine. My friends and teachers were supportive. Everyone was “looking out” for me. I could feel the support but sometimes I could feel a little pity too. I am thankful for the people who didn’t “pity me”—my brother, my mom, my dad, my piano teacher and some others.

The turning point

On May 13, 2017, five days before my seventh-grade Disneyland trip—the one I’d been looking forward to the whole year—I suffered a right-side stroke in the middle of the night. I woke up at 2:00 in the morning, crying, not able to move my whole left side. The medics came and told my parents “it's just a panic attack.” My mom is a healthcare professional and she thought those were the symptoms of a stroke. She called my aunt, a nurse, who confirmed her suspicions.

It took the ambulance people 30 minutes to decide to take me to the local hospital. My parents sobbed in the waiting room while the doctors from the local hospital called Stanford and UCSF to find out what to do because they never had to deal with a pediatric stroke before. Packard Children’s Hospital came to pick me up. Hours were wasted, I learned later from my parents. At Stanford the team immediately took me to surgery and took the clot out. Fortunately, the clot was removed before it could get really bad, but obviously not soon enough.

I woke up, and the first thing I saw was my dad. We have an ongoing joke where I ask him if he loves me and he has to find a way to say “no.” I asked him, and I remember he replied “yes.” I remember laughing and my dad being relieved that I was not brain dead. The next thing I asked was “How am I going to go on the Disneyland trip?”

Unfortunately, even though the clot was removed quickly, I was still left with side effects, so I couldn’t leave the hospital. I was put back on the transplant list. On May 18, the day all my friends left on their trip, I was transferred to Santa Clara Valley Medical Center for rehabilitation. I settled in for three months of training. I had four hours of therapy a day: two hours to learn how to walk again, and two hours to try and get my hand to move again. With the rest of the day, I just practiced those exercises again and again. By the time I was one and a half months into therapy, I could walk with a cane, but my hand wouldn't move. At three months, I could walk by myself, yet my hand was still lifeless. I was discharged, and I went home.

Ultimately it took months for me regain the ability to use my hand. To anybody who has had to recover from something, whether it be smoking, drug abuse or a medical issue: I admire your strength. We are the only ones who will know how hard it was. It's sad but true. Anyhow, this may sound stupid, but I think the stroke was a good experience for me. It has made me stronger than most people will ever be. It helped me get past my constant fear of needles. Since my blood was drawn every morning, I stopped wasting my time caring about or being afraid of needles.

Finding strength

Somehow, I managed not to snap, and I continued to smile and be grateful for everything people do for me. Even the pitying remarks made me extra strong. I thought I was as strong as I could ever be. Turns out, I was wrong. I came back to school the next year. (By the time I had recovered, my seventh-grade year was over.) I reconnected with my old friends and made a few more. My life was normal again. I lived day by day, waiting for the transplant call. Starting in October 2017, I started to feel more tired and nauseous all the time.

On November 5, 2017 I nearly fainted after throwing up. I felt like I was dying. The next day, I was admitted to the hospital for, as the doctors called it, “fluid overload and worsening heart failure.” Upon admission, I was updated to status 1B on the heart transplant list. They inserted a PICC line, which is a long catheter that is inserted through the skin like an IV and travels through the blood vessels that connect to the heart. They had to do it three times. By the last time the lidocaine was barely in effect. They began an IV medication called milrinone, at a high dose which qualified me for Status 1 on the transplant list.

I started to go to the hospital school. I made some new friends that already had had heart transplants. They were happy and energetic. I lived at the hospital for a month. I learned the names of all the nurses, the doctors and the other hospital staff. I learned who was good at placing IVs and taking them out. I woke up three to four times every night to go to the bathroom. They stuck me with needles every day. I never said a word. On November 13, I wrote a Christmas Make-a-Wish Foundation letter, like I did every year, except this time, I asked for a new heart.

Transplant

On Sunday, December 2, my dad was out of town for a day. That night, my cousin came to stay in the hospital with me because my mom had to stay with my brother at home. We were walking and I said, “The other kid at school who was waiting for a transplant just got his heart a week ago. I think I'm next.” The next evening (before my dad returned from his trip) the nurse took my vital signs before I went to bed. I didn't have a data plan yet, so my parents always texted me on Snapchat. The nurse stood there tapping the monitor. My phone dinged. It was a text from my dad. I opened Snapchat and read his message. “You got a heart,” it said. I accidentally exited the chat screen. For those of you who use Snapchat, you know that a message disappears if you don’t save it. I tapped the chat again, but the message was gone. I looked at the nurse. “My dad says I got a heart?” I was panicking. Nobody was there. My brother FaceTimed me. “Is dad for real?” I asked. He nodded. “I'm so dead,” I said. To this day, I still do not understand why I said that. My mom, who was apparently on the phone with the doctor, hung up and yelled at my brother to entertain me. My brother told me the most stupid jokes, but I laughed anyways.

Mom was on her way. I started to calm down. The on-call cardiac fellow came to talk to me. He was smiling and smelled strongly of coffee. He explained that there was a possibility that the heart wouldn’t be a match. The nurses I had gotten to know over the past month came to congratulate me. My cousin came in. She was crying. I thought she was too emotional. My mom arrived a couple of minutes later, followed by my crying cousin's husband. We talked to the stream of people who were coming in, from the anesthesia doctors to the fellows to the people who needed consent to operate. My dad arrived. Everyone else left, and I tried to get some sleep. The next morning my mom came in again, and my parents signed the forms consenting for the transplant. I got ready to go to the ICU.

Because of my blood thinner, they have to give me vitamin K to thicken my blood back up. Five minutes into the infusion I can't breathe. I don’t know what’s happening. They call a code and nurses rush in. We later find out it happened because I had an allergic type reaction to the vitamin K infusion.

They gave me an oxygen mask. It was a huge scare, but the transplant was still on. They took me down to the ICU to wait. The three attending physicians that would be in the OR came to talk to my family about the operation. Three of the world's finest doctors would take my organ out and put a new one back in. They left, and I FaceTimed my brother again. My dad took my phone and told him to study. I said goodbye to my brother and was wheeled to the operating room. I was fine until we got to the doors. That was where I started to cry. My dad tapped my face like a mini-comfort slap and told me I’d be okay. My mom, a Buddhist, told me to pray. I tried, but it didn’t help. They stepped back, and I was wheeled away while my parents stayed behind.

I started to calm down in the OR. They transferred me to the operating table and placed my head on a squishy foam cushion. I suddenly regretted watching so many surgical shows. I remembered all the blood and scalpels. They placed an oxygen mask over my face. All the doctors and nurses were very kind. I don't remember when I drifted off, but soon enough I did. I remember waking up in recovery. There were too many tubes around my body, so I couldn't see my incision. I knew it was waiting for me, though. I remember having an intense craving for water, but I couldn't drink normal liquids because my intubation tube had damaged my throat. Everything was thickened, and it was disgusting. And I'm not even exaggerating. Try warm, thickened Gatorade one day. You’ll love it. It was a good thing I could eat again soon enough. My recovery was outstanding, though. I was slowly weaned off the IV medications, and eventually I was completely detached from my IV lines. I took around 25 pills every day. I was discharged on December 18, right before Christmas, which was post-op day 13—astoundingly quick.  I remember vividly that as soon as we checked into the Ronald McDonald House at Stanford, I asked my Dad to take me to dinner at PF Chang’s across the street where my Dad sat there watching me gulp down two full plates of food in amazement. 

I’m so thankful for my life. I am so thankful for being taken care of by so many caring doctors and nurses and hospital staff. My parents sacrificed everything just to help me. I had to stay at the Ronald McDonald House at Stanford for a few months following my transplant. But, I got to celebrate Christmas with my family, and I will have many more to spend with them.

I’m proud of my scar. It is and will always be part of my identity. I am the girl with a history of restrictive cardiomyopathy. I am the girl who lived.

Brief update – December 2018:

Hi everybody! It’s Athena. I’m fourteen years old now and happily back at school. It’s going to be a whole new year! School is going great and I’m so thankful for another chance at life. I’m so happy to be celebrating my one-year anniversary with everyone and sharing my joy. I’m really glad Packard Children’s offered me a chance to share my story and I hope I was able to share some useful experience and inspired some kids and parents about the great new doors that transplantation opened for us. I want to say THANK YOU again to everyone on my care team, my parents, brother, doctors, NPs, PAs, and just about everyone who I met at Packard. I know I am lucky to be here. I’m looking forward to writing something new every year and sharing! Thanks for reading! Much love.