Tag: medicine

May 14, 2018

~ Campjustin ~ Leave a comment

Well, I’m not leaving today either. They told me yesterday that I would leave today.

I took my Chinese final today. I take Chinese class, but I have to take the final before school ends, which is in one week.

It was hard taking the final because I take prednisone, a steroid. With prednisone, my hands constantly shake. I can barely write the characters.

The staples, IVs, and PICC lines are out (see May 13, 2018), so I really liked today. I went upstairs to the playroom to play on the 3DS. The hospital has a playroom, where patients can go and… play.

May 18, 2018

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So the school year is ending on June 1, exactly 2 weeks from today. I still have some homework to work on.

My teachers at school have been super nice. My school counselor contacted all my teachers, and they excused me from my semester finals. All my homework and classwork have been excused too.

I’m working on homework because I need extra credit. Remember when my English teacher visited me at the hospital (see May 6, 2018)? I did horribly in her class. I have a D in her class. Long story short, I had to switch to another English class. Now I’m doing homework for that English class.

I sat down at the Ronald McDonald House’s community dining area with a cup of tea and started to mark and annotate Romeo & Juliet. It was surprisingly hard. My hands keep shaking  that it takes me twice the effort to simply write. My hands keep shaking because I’m on a medication called Prednisone. I think Prednisone is a steroid.

June 3, 2018 (Sick Pt. 1)

~ Campjustin ~ 3 Comments

I woke up with a sore throat. In the past, a sore throat is a precursor to being sick. I CAN’T get sick. I’m only 2 months post heart transplant. When you’re sick, you’re more prone to infections. If I get an infection, I might contract cancer, and the only treatment is chemotherapy. Or infections could damage my new heart and I’ll need another heart.

Let me explain:

It’s really easy for me to get sick right now. Your immune system fights off colds, but it also fights foreign substances. When I got my heart transplant, the doctors created a black death for my immune system. That way my white blood cells can’t fight against my new heart.  

After the black death, I also take immunosuppressants. Immunosuppressants are medications that suppress your immune system. We need to make sure the population of my white blood cells are controlled. With these immunosuppressants, I’m more vulnerable to infections.

I say right now because when you’re fresh out of transplant you’ll be more vulnerable than a year later. As your body gets more adjusted to your new organ, you can decrease your immunosuppressants and allow your immune system to become stronger. As I’m only 2 months post, I’m more vulnerable than I will be 6 months post.

If I get sick right now, I don’t know whether my immune system will be strong enough to fight it. If my immune system isn’t strong enough, I can get an infection. The infection can damage my heart, and worse case scenario make me need another one.

Another possibility is I get lymphoma. When you’re sick, you activate your lymph nodes to fight off infections. Lymphoma comes from those lymph nodes. If you’re to get cancer after heart transplant, it’ll be lymphoma. The only treatment for me is chemotherapy.

June 4, 2018 (Sick Pt. 2)

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I’ve been coughing a lot today. I think I’m sick. I don’t want to be sick. I don’t want to go back to the hospital (see June 3, 2018 Sick Pt. 1).

Tonight I was shivering. I was shivering yet hot at the same time. I think it’s because of my prednisone.

When we left the hospital, the doctors told us to call them anytime I needed. They gave us a binder with the hospital’s number on the cover. The number was available 24/7. My mom didn’t call the doctors because she was afraid that I would have to go back into the hospital for a common cold.

June 5, 2018 (Sick Pt. 3)

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My mom called the doctors tonight. She had to. My cold wasn’t worse than yesterday, but it still stayed the same.

Getting a cold is bad for me (see June 3, 2018 Sick Pt. 1). Especially this early out of transplant, I’m more vulnerable to infections.

I coughed all day. I also shivered, like yesterday.

The doctors called back and told us if I got more sick and didn’t get better. That’s a relief, I don’t have to back into the hospital.

August 24, 2018

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Today the Pink Dot Club was featured at the Club Fair. The Pink Dot Club is a club at my High School that raises awareness for organ transplant. The Club Fair is an annual gathering of clubs at my High School for students to explore.

I left my class early to help the club president, Maddy, set up her booth. The sun was burning intensely, so I whipped out some sunscreen and spread it on my skin. Skin cancer is much easier to contract after transplant.

The substitute librarian stopped and looked at our club booth. She read the description and asked for more information. Maddy introduced the club and I introduced myself as a heart transplant recipient. I was shocked to learn that the substitute librarian had a kidney transplant.

Amy McCarthy, the substitute librarian, had her transplant when she was 40. I talked to her and she asked me what medication I was taking. I said Prograf, Cellcept, Cardizem, and Gleevec (my chemotherapy drug to control my eosinophils). She said it was amazing how I was only 4 months out of transplant and was taking such few medications. I said it was amazing that I wasn’t the only person to have a transplant. Someone I could finally relate to, which I described in detail at my first day of school, August 13, 2018.

Suddenly it seemed that I wasn’t the only person that’s gone through this. It’s so strange transitioning from being in the hospital to a “normal” life. I’m glad to have guidance from an older adult.

Once the club fair started, I met the other officers of the club. They seemed nice, but they didn’t pay much attention to me. People kept on coming to the booth. I didn’t say I had a heart transplant 100% of the time because I was still deciding if I should be normal.

August 29, 2018

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I had my biopsy today. A biopsy is a procedure to get a sample of tissue from your muscle. For me, they’re getting a sample of my heart tissue to test how much rejection I have.

I met Kayano’s mom at the hospital lobby. Kayano was my next door neighbor at the Ronald McDonald House. I hung out with him a few times and celebrated his birthday with him. Kayano has severe kidney failure, and has to be put on dialysis before he can be accepted on the transplant list.

Kayano is currently at the Lucile Packard children’s Hospital school. Kayano’s mom says the hospital school is super easy, but when I was at the hospital school it was hard to catch up with my classes at Foothill. Koda, Kayao’s little brother, is at the public elementary school in Palo Alto. The Palo Alto District is supposedly one of the best public school districts in the country.

I used less anesthesia this time, so I was awake during the biopsy. Surprisingly, it wasn’t painful. There was just pressure. Instead of crying out in pain, I just laughed.

Before I could be discharged the doctors examined me. They told me my prograf levels were good, and my medications would stay the same. I was happy with how the biopsy went. However, I can’t swim for a week in case the wound gets infected.

September 27, 2018

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Today was my appointment with the endocrinologist. I started seeing my endocrinologist when I was really young, after my first heart surgery at Stanford. Because of my heart failure, I didn’t have enough growth hormones in me. On the growth curve, I wasn’t catching up to my peers. Before transplant, 6x a week I would need to inject somatropin, a growth hormone, inside me.

I’m 5’3”. I’m at below average height, but at least I’m not at my projected 3’. The endocrinologist said that I could grow about one more inch.

In the same building was my cardiologist that urged me into transplant. He caught my Protein Losing Enteropathy, arrhythmia, and talked to my mom about transplant early in the year. My mom said he was a “miracle doctor,” and the reason I’m alive.

October 4, 2018

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My 504 meeting plan (plan meeting?) was today. A 504 plan is a specialized education plan for kids with disabilities to give them extra accommodations. For example, if a kid had a learning disability a 504 plan would allow them to have extra time on tests. In my case, a 504 plan accommodates me when I’m in the hospital, have medical related illnesses, or in the rare case when I’m homeschooled.

Last school year my 504 plan was a lifesaver. When I was hospitalized last school year for calf pain, the 504 plan allowed me to be homeschooled for over a month. I was in the hospital for both semester finals, and the 504 plan excused me from taking them.

The vice principal and the nurse were there at the 504 plan meeting. All of my teachers except my Biomedical Sciences teacher (see October 12, 2018) and Chemistry teacher (see October 18, 2018) were there. I explained what I needed: unlimited bathroom access, access to the nurse’s office, extended time for missing schoolwork and homework, and the ability to move away from sick and coughing classmates.

After transplant, I’m very immune compromised. With a new organ, the immune system might see it as a foreign substance and start attacking it. Therefore, I have to suppress some of my immune system through my medication. If I do get sick, I have a chance of getting a live virus that will attack my heart or activate my lymph nodes that’ll trigger a cancer.

The school nurse understood the severity of the situation and gave the teachers a germ free classroom handout to pass in class. The hand out stressed the importance of not coming to school sick because of one (me!) immunocompromised classmate in their class. The hand out is included below:

The nurse said I’ve been through a lot, but told me this would be a great school year.

One of the students in this class has a medical condition that makes the student highly susceptible to infections. This is because of a medicine this student takes; there is no concern that this is a potentially contagious disease to any other person. We’d like to ask the parents to be considerate to the student and all the other students in the class.

Points to review for infection control (for complete district policy, refer to the health services website)

  • Do not send your child to school if she/he has a fever of > 100 F
  • She/he needs to be fever free for at least 24 hours before returning to school.
  • Do not send your child to school on fever reducing medication, she/he can still be contagious
  • If your child has been diagnosed with a significant infectious disease, such as chickenpox, please notify school health office
  • Do not send your child to school after she/he has vomited at home
  • Do have your child see a health care provider for any unexplained rash.
  • Immunize your child against influenza.

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.

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