Tag: hypereosinophilic syndrome

May 22, 2018

~ Campjustin ~ 1 Comment

I had my first psychology appointment today.

At the hospital, I was miserable and pretty sad, so I was looking forward to my psychology appointment.

I’m required to go to psychology because they think as a teenager I’ll screw up. Turns out a lot of teenagers die after transplant because they refused to take their medications. That’s dumbbbb.

I mean, really? I know you need to fit in, but I wouldn’t risk death. Your life depends on this medication.

For my first psychology appointment I was asked to make a timeline of my life, then write down my goals for 10 years from now.

Okay, when I was 2 I was rushed to the hospital because I was vomiting. It took 2 weeks for the doctors to diagnose me with hypereosinophilic syndrome. My heart was damaged so I needed my first open heart surgery. Then April 10, 2018, I was put on the heart transplant list. On April 27, 2018, I had my heart transplant.

My goals In 10 years: running triathlons, graduated from University, and living with my partner (whoever they are). Oh yeah and a nice job that pays me a 6 digit salary. That’s the good life.

We then talked about adjusting back to “normality”. If someone asks me, “Where were you during the school year?” I’ll just answer “I had some business to take care of.” If they keep pressuring me, then I’ll say “I was visiting my family in China.”

I don’t want to be weird. I don’t know how people would react if I said if I was in the hospital.

I think it’ll be hard for me to go back to school and pretend none of this ever happened. I don’t think I can go back to my old mindset where all I worried about was my grades. I guess what my Mom said was right, “It’s better to live in ignorance than in fear.”

September 28, 2018

~ Campjustin ~ Leave a comment

Today was my doctor appointment. At 7 AM I woke up and got into the car. I slept on the whole ride to Stanford, except waking up to take my medicine.

I remembered to grab the cards we made at the Pink Dot Club meeting (see September 18, 2018). After putting on my mask, we went to my appointment.

After my echo, which is an ultrasound (the ones the doctors use to take pictures of babies in their womb) of the heart, we were told to wait outside. After a room was available, we quickly went inside.

The doctor examined me and told me the results were good. My Prograf levels were good, and they didn’t change anything. I talked to the doctors about my leg pain. Last year, I was hospitalized for extreme calf pain. After being discharged from the hospital, I had to be homeschooled for a month before I was able to walk around my school again. My mom expressed concern about it being from my hypereosinophilic syndrome, a blood disorder I contracted leading to my heart failure. The doctors told us to book an appointment with the doctor that deals with my hypereosinophilic syndrome (see October 16, 2018).

After the appointment, we delivered the cards. We went to the Cardiovascular ICU (Intensive Care Unit is where patients are admitted when they have a serious illness that needs constant monitoring) and delivered as many cards as we could. We also saw Jessica (pseudonym) and delivered her card. We couldn’t say hi because she was too busy with her VR game. Nicole’s room was empty.

The rest of the cards we donated to the Family Resource Center. The Family Resource Center is a department in the hospital that allows patients to rent games, movies, books, or is a place for families to relax or get work done. It’s where I rented the Mission Impossible series, Lord of the Rings trilogy, the Avengers series, the Captain America series, Matilda, Tom and Jerry, and other movies.

Later that day I had a swimming lesson at 4:30. I’m still a beginner at swimming, but I know I have the ability to get better. After transplant, I can even be on my High School’s swim team! After swimming, we met up with Joanna and Andrew (see June 16, 2018) for ramen.

October 16, 2018

~ Campjustin ~ 2 Comments

Today I saw my oncologist/eosinophil doctor. He usually treats patients with cancer, but since the drug that controls my eosinophils is a chemotherapy drug, I’m under his care.

I also saw Kelly (pseudonym) today. Kelly was my social worker when I was a baby, because when I was a baby I was cared at Kaiser before being transferred to Stanford. She was so shocked to see me as a teenager! She even said I was handsome (I’m not but that was flattering). After hearing about my transplant, she said she didn’t know. Apparently it wasn’t written on my record, which was weird.

The doctor was also shocked to see me! He said “No way, you look so old!” He also didn’t know about the transplant, so it was obviously not on there. He said he wanted to try to stop Gleevec, the chemotherapy drug that controls my eosinophils, because my hypereosinophilic syndrome was gone. If I get off the drug, will the disease come back?

The doctor is retiring in 6 months, so we want to be sure to have the test trial before he retires. Another doctor that doesn’t know my history of my eosinophils probably won’t be as good as he is. The doctor will call my post transplant team at Stanford.

November 2, 2018

~ Campjustin ~ Leave a comment

Today was my doctor’s appointment. Since my Mom is in Paris, I went with my dad instead. We left around 7 AM.

At the doctor’s appointment, I went in for an echo first. An echo is basically an ultrasound for your heart. Then I met with my doctor.

A funny story about my doctor: he knew me since I was a baby. When I was at Kaiser being treated for my hypereosinophilic syndrome, I was his first echo. When I was older and transferred to Stanford, I was also his patient. He said he only knew two people with hypereosinophilia, and I was both of them.

I recited my medication: 1 mg pill of Prograf 2x a day, 360 mg tablet of Cellcept 2x a day, 120 mg capsule of Cardizem 1x a day, and 100 mg of Gleevec 1x a day. If you’re a transplant recipient, you probably know all of them except for Gleevec. By my 3 months post transplant, I got off many drugs, for example Prednisone.

I lost a pound between now and 3 weeks ago. The doctor advised me to eat more protein. Since I am exercising, I’ll burn my calories and gain muscle. I’ll start drinking protein shakes again.

It is 6 months post transplant. Now I’ll only have hospital clinics, echo, and blood draws once a month. I’ll also only have to do biopsies once every 3 months.

I almost left the appointment without getting the flu shot. Since I am fresh out of transplant, I have to get my flu shot in 2 phases. During the last doctor appointment, I had my first dosage. This appointment I got my second dosage.

November 14, 2018

~ Campjustin ~ Leave a comment

I had a blood draw to test my Prograf levels today. Prograf is my immunosuppressant. I regularly test my immunosuppressants because is they’re too effective, the doctors lower its dosage. If it’s not effective enough, the doctors raise the dosage. My Prograf levels are supposed to be between a range, and if they’re not then my Prograf dosages are adjusted.

Here’s my medications (over 6 months post transplant):

8:45 AM8:45 PM
0.5 mg Prograf1 mg Prograf
360 mg Myfortic360 mg Myfortic
100 mg Gleevec120 mg Cardizem

Myfortic is another immunosuppressant. Cardizem is for my blood pressure.

Gleevec is not my transplant medication. Gleevec is my chemotherapy drug that controls my hypereosinophilic syndrome

December 25, 2018

~ Campjustin ~ Leave a comment

Merry Christmas everyone!

13 (or 14?) years ago from today I was in the hospital for my hypereosinophilic syndrome.

Last year from today I just came out of the hospital.

I am grateful for being able to take my semester finals this year and stay at home with no pain.

My life is amazing right now.

Merry Christmas and Happy New Year!