Who Am I?
Hi, I’m Justin Wang! I was born as a healthy baby boy in Pleasanton, California on October 20, 2002.
My Medical History
I have a rare blood disorder, hypereosinophilic syndrome, that attacked my heart when I was 2. I had a heart transplant age 15 on April 27, 2018.
When I was 2 I was rushed to the hospital. My skin was pale and I was vomiting on my bed. One simple blood test and they knew I had hypereosinophilic syndrome, or Loeffler’s syndrome.
Eosinophils are a type of white blood cell (white blood cells are your immune system) that attack foreign substances. Hypereosinophilic syndrome is when there’s a high count of eosinophils in your body.
Hypereosinophilic syndrome is extremely rare. There’s barely any literature about it, so the doctors had no idea what to do. Keep in mind I was being treated at UCSF, one of America’s leading pediatric hospitals, that treats many, many, sick kids, and still, they had no idea what to do.
I spent a long time at UCSF. They treated me with a chemotherapy drug called Gleevec. It worked by killing my eosinophils and suppressing them.
However, by the time my hypereosinophilic syndrome was cured, the disease had done irreversible damage.
With such a high count of eosinophils, they had to attack something. They attacked my heart.
The entire right side (not left side) of my heart was damaged. Like, it literally didn’t work.
I was transferred from UCSF to Stanford. I had my first open heart surgery at Lucile Packard Children’s Hospital. They rerouted the veins going to the right side of my heart to bypass directly to the lungs. It was called a Glenn procedure.
It worked and I was cured. Kinda.
The doctors told my Mom that the procedure would only last up to my teenage years. When I’m a teenager, my heart will start to fail again. My Mom knew this, but she decided not to tell me about my condition because it’s “better to live in ignorance than in fear”.
I knew something was wrong with me. I’m not stupid. There’s a big scar on my chest. Everynight I get a shot to insert extra hormones. I cannot do any sports. I have a G-tube.
What is a G-tube? A G-tube is a gastric tube, and it inserts extra calories directly into your stomach. Every night I insert 2 cans of Nutren 2.0, and a pump inserts it into my stomach while I sleep. I was trying to get off the feeding during that time, but I suddenly lost weight so the doctors forced me back onto my feeding.
On October 20, 2017, I turned 15. A month later, I was in a car with my Mom when she said, “Justin, you have chronic heart failure. The doctor and I have talked for months, and you need a heart transplant.”
She explained everything: why I had the scar on my chest, my hypereosinophilic syndrome, my G-tube, and why I’ll never be normal again.
You probably expect me to feel sad. I was, but I mostly just felt numb, as if someone sprayed numbing medicine on me. I didn’t cry, or curse, or wail.
It was confusing feeling numb. I tried to cry but no tears came out. I tried to curse but no words came out. I laid down on my bed and watched my fan spin round and round.
Then I was back at the Stanford hospital. The doctors told me I had protein losing enteropathy, which was only explained by a failing heart. Protein losing enteropathy is when your body doesn’t absorb the protein you eat. That explains the sudden weight loss.
The doctors said, “The only solution to protein losing enteropathy is a heart transplant.”
So they told me, we’ll consider you being on the list.
In order to be considered, I had to go through a psychology evaluation, transplant education, meet with a social worker and dietitian, and talk about my feelings towards transplant.
Transplant education was heartbreaking. It wasn’t because waiting was the hardest part, or the fact I wouldn’t be going back home until after 3 months, it was the complications that were heartbreaking. There were so many and they were so common, yet their treatments called for chemotherapy or even another heart transplant.
Just listening to the transplant education gave me anxiety. Suddenly my heart went THUMP, THUMP, THUMP. I didn’t know what happened, but it was only for a few seconds. It must’ve been from my anxiety.
I asked, “Is transplant my only option?” I shouldn’t have asked that. They interpreted that as hesitation, and the psychologist immediately marked that down.
Before I left my appointment, the doctors put me on Coumadin, a brand of blood thinners. They didn’t want anything to clot in my heart. Coumadin would not be kind to me.
The doctors called me a few weeks later. I was rejected from the heart transplant list.
November, I had to pull out my teeth. I went to the hospital, but on the heart monitor, they saw something. What they saw was arrhythmia.
Arrhythmia is an abnormal beating of the heart. The doctors told me that my arrhythmia was also because of my failing heart. They gave me a mini EKG device connected to an app. The app was called Kardia, developed by AliveCor. Whenever I feel arrhythmia, I can test myself with just my fingertips.
What does arrhythmia feel like? It feels like heart palpitations. It feels like my transplant education. When I have arrhythmia, my chest will go THUMP, THUMP, THUMP.
That’s exactly what happened in December. I just got home from school and was working on my Geometry study guide when all of a sudden: THUMP, THUMP, THUMP. I checked on Kardia and I was having arrhythmia with a 150 BPM (BPM stands for beats per minute. Normal BPMs are between 50 and 100. The only time you’re supposed to have 150 BPM is when you’re doing high-intensity exercises).
I waited for 5 hours and my arrhythmia was still going strong with 150 BPM. It was time to go to the hospital.
I brought my teddy bear, Beary, Kardia, and my phone charger. We were told not to go to a nearby hospital, and instead to go to Stanford. We did. At the Stanford emergency room, an IV was placed inside me and the medication was about to be inserted when, all of a sudden, my arrhythmia just stopped.
I was still in the hospital for a week. They were introducing me to a new medication: amiodarone. Amiodarone was supposed to control my arrhythmia, which was also a bust.
I got out of the hospital a few days before Christmas. In under 2 weeks, I was back in the hospital.
This time I was at the Kaiser hospital. A sharp pain was in both of my calves, and the pain wasn’t leaving. That hospital stay was the most painful time in my life. The doctors gave me a button that would insert pain medication whenever I pressed it, and I pressed it 47 times in one hour. They asked if I was sitting on it. I was not.
The doctors had no idea why I was having my leg pain. One theory was that Coumadin, my blood thinner, interacted with Amiodarone, my arrhythmia medication. Another theory was that eosinophils were built up in my leg. I believe more in the first theory.
Physical therapy taught me how to use crunches because they didn’t know how long my leg pain would last, or if it would even go away. However, after one week, I woke up and my legs instantly felt better. The pain was gone.
Another bust! When I was discharged and back home, the pain gradually came back. Luckily, the doctors gave me Ibuprofen for when my leg pain comes back.
I was gone from school for a month and a half. My school’s campus requires walking from one classroom to another, and I needed to heal. Instead, I was homeschooled by another teacher. She gave me all my homework and assignments from my teachers. That was so stressful. I was so behind in all my classes, yet they didn’t give me any free passes.
I remember when I came in for a doctor’s appointment and my social worker gave me a diary where I could record my feelings. On the first page was a checklist saying: “List what you want to bring with you to the hospital”. I thought, “Has it really come to this?”
I came into my freshman year of High School with high hopes. I didn’t want any of this. My classmates say I’m lucky that I didn’t need to take my semester finals, but I would gladly take my semester finals over having to stay in the hospital.
My Mom was right. A life in ignorance is better than a life in fear.
During my home studies, my heart was continuing to decline. Almost every other week I was required to wear a Zio patch, which was a heart monitor. The doctors at Lucile Packard Children’s Hospital interpreted my patch’s results and told me that I was no longer having arrhythmias sporadically. I was having arrhythmias constantly.
For an entire month, I was in an arrhythmia. An entire month.
I went back to Stanford. They told me they would consider me for the heart transplant list again. I had to go through the gloomy transplant education again.
When I came back to school, it wasn’t long until it was spring break. During spring break I wanted to stay at home and relax, until my Mom called me, saying I needed to go to the hospital again. I was going to get an ablation.
What is an ablation? An ablation is a procedure that would hopefully prevent my arrhythmias. They go inside your heart and burn the parts of your heart where the arrhythmias occur.
There’s a 50% chance of it working.
Not even 24 hours after the procedure, my arrhythmia came back. So that sucks. Actually, more than sucks. It sucked so much that it physically hurt me.
When I was in the hospital for my ablation, I was being evaluated for the transplant list again. On April 10, 2018, I was accepted onto the heart transplant list! Yes!
However, I was on the heart transplant list for “a taste of being on the list” since my priority was so low.
Here is how the heart transplant list is organized:
- 1A: Top Priority
- 1B: Important
- 2: Lowest Priority
I was a status 2. The last time a status 2 got a heart transplant at Lucile Packard Children’s Hospital was 4 years ago.
You might be wondering, how does a low status get an organ? Well, one heart doesn’t fit all. There are many factors to determine what organ goes to who, including blood type and size. Things such as race or gender are not determining factors.
I accepted this harsh reality. I said, “6 years and I’ll get my heart.” I really believed 6 was my lucky number. It was because my Mom’s friend waited 6 years for his heart transplant. My Mom and I were picking which online school to go to for 10th grade, so we didn’t expect a miracle.
Edit: Apparently it wasn’t 6 years, it was 4 years.
A miracle did happen. On April 10, 2018 I was added onto the heart transplant list, and April 27, 2018, I got my heart.