Tag: chasing normal

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.”

May 27, 2018

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My Mom tells me I complain a lot. I complain a lot and still do. I complain about the light sedation for the biopsy but I still did it. I complain about walking but I still do it. I complain about sleep but I still do it. I complain about the IV but I still do it. I complain about the needles but I still do it. They tried 8 times to put 4 IVs in me. I could’ve refused to do the 4 IVs and the nurses doing it, but I still did it!

And can you blame me about complaining a lot? In 1 year I:

  • learned, for the FIRST TIME, that I had a chronic illness for my entire life. This alone would change someone’s life.
  • learned that my heart was failing
  • my normal life was taken away
  • got my first IV
  • was considered for heart transplant
  • missed 1/2 my school year
  • In 8th grade I had an entire plan for my future: where I was going to go for college, how I was going to get there, what my job would be. In 1 year I tossed that all away. It was my dream and I tossed it all away! Now it’s too late to get back on track. I have a B last semester and a C this semester in English because I was in the hospital for 1/2 the entire year.
  • considered transplant by doctors
  • had 3 hospital stays in 3 months in a row
  • considered dropping out of school
  • was listed for transplant
  • got a transplant 2 weeks after listing
  • suffered recovery
  • still suffering recovery

All of this hospital, dying, and pain stuff is new to me. I’m jealous of all the other kids in the Ronald McDonald House because even though they’re like me and suffered like me, they got used to the IVs and hospital stays and surgery and pain. Like how when you get chickenpox you develop an immune system so that next time you won’t get chicken pox. They developed some kind of an immune system against this stuff.

Me, I didn’t KNOW that I even had a right heart ventricle failure until this year. THIS YEAR! That’s 7 months before transplant. It was only 4 months before transplant that it started to sink in that I would not have a normal life anymore. So technically it gave me 4 months to develop this immune system that these kids developed over a couple of years. Then BAM! I didn’t even experience an open heart surgery before, so I had absolutely no immune system for open heart surgery. Then they come in and slap me with the BIGGEST open heart surgery.

Am I not allowed to complain??? It’s the only thing keeping me sane right now. There’s nothing you can do to make this pain go away. It feels good to complain. I don’t know why, but it feels good to complain, so I do it.

July 6, 2018

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I swam for the first time in seven years today!

I’ll start off with the swimming. I quit swimming when I was eight. I didn’t see the point in it since it only made me exhausted, and there were no results. I was swimming for 3 years, and I only managed to build up from 10 laps, 250 yards, to 12 laps, 300 yards. Swimming for me was exhausting. I wouldn’t even be halfway through a lap until my heart started pounding, my breathing would become desperate, my ears started ringing, and my vision would be blurry. That was my life.

It makes me sad that I couldn’t play sports like my classmates. If it wasn’t for my heart I would’ve advanced in swimming, maybe be on a team. Maybe I could’ve gotten a scholarship to college if it wasn’t for my heart. I could’ve played other sports too, like soccer or basketball.

After seven years of not swimming, I felt so much better in the water. The water soothed my joints and massaged my muscles. Immediately after transplant I was so sore that I couldn’t even stand.

I plan to start swimming as a sport. As I mentioned above, with my damaged heart I didn’t have the ability to play sports and therefore I was sad. After transplant I have a chance, and I’ll take it.

July 25, 2018

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Today I left Ronald McDonald house. It couldn’t be more bittersweet.

For one, the Ronald McDonald house was probably the happiest time of my life. I met a lot of people that I became friends with. They provided a network of support which is hard to leave. Everyday was also an adventure. I could walk across to the mall, get food from the common area, talk to people in the kitchen, or explore downtown Palo Alto.

On the other side, I’m glad to leave. I hate being in the hospital. Leaving means I’m healthy, and I want to be normal again. Even though I’ll have a hard time being “normal” again once school starts, I will be.

I’ll always remember my time at the Ronald McDonald house. I’ve met so many people that had amazing stories. I’ll always keep them in my mind.

August 13, 2018

~ Campjustin ~ 1 Comment

Today was the first day of school. It was awful.

I go to Foothill High School, a competitive High School in California. As you pass through the hallways, you can hear people gossiping about homework, test answers, and teachers. The environment is so competitive, that school becomes a student’s life.

At school, I tried explaining my story to one of my trusted classmates today and all they said was “That’d make a great college essay!”

One of the things my transplant education didn’t warn me was that after transplant I had a new perspective on life. I can’t look at my classmates, my school, or my life the same way as before. I realize, unless they went through the same thing I did, they won’t emphasize with me.

I think I can compare this to military veterans. I am not saying that I’m the same or better than a military veteran, just that we can be similar in an aspect. After a veteran from the military is discharged, they can’t view life the same way as before. They’ve seen too much war, too much sadness in life and cruelty in humanity to adjust back into society.

Personally, being in the Ronald McDonald house and constantly being around sick people made me realize the unfairness in life. I don’t know how to adjust from a hospital setting back into a normal setting. Do I try to shove this new perspective away, or continue to acknowledge it?

As I passed from class to class, I realized I couldn’t relate with my classmates anymore. When asked “What did you do over the summer?” I just said “Stayed at home.” I knew that if I said “at the hospital” it would just make them uncomfortable.

Transitioning back to normal life is hard, but all I need is a group of people that’ll understand me. My comfort will be there.

August 24, 2018

~ Campjustin ~ 3 Comments

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.

September 26, 2018

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Amy (see August 24, 2018) was my substitute teacher for English today. When I walked into my classroom, I was really shocked to see her sitting at the teacher’s desk. I waved to her and she responded with a smile and a wave.

Later in the class we talked about transitions back into life. I really wanted to know, how did I become “normal” again? She told me I have a new perspective. What I do with that perspective is up to me. Amy said she understands if I don’t want to be completely honest about my transplant. Before she left for lunch I asked for her email. That way I have someone to talk to.

At lunch was my journalism club meeting. I decided to do an article about Amy. The idea was a hit among them, because a kidney transplant is not something that happens everyday. Maybe another meeting I can tell them about mine.

October 2, 2018

~ Campjustin ~ 1 Comment

I contacted Amy. (see August 24, 2018). It relates to my first day of school (August 13, 2018) question: How do I transition back to being normal?

Hi Amy, I am the 10th grader with the heart transplant.

I just wanted to ask you a personal question. How did you transition back into normal life after getting out of the hospital?

No one understands what I’ve been through. After I tell my classmates, all I get is “cool story” or “Wow! I didn’t know that” or “that’s awesome”.

I thought the Pink Dot Club (the transplant club at Foothill) would be different but it’s exactly the same. Even the club president cares more about her 4 AP classes than she does about the patients at Stanford and UCSF.

Sometimes I feel like I want to drop out of school. I don’t want to be surrounded by people talking about APs or Colleges or Test Answers or SATs. It makes me angry how everyone only cares about themselves: what grades they have, what classes they have, what friends they have!

Today, in the Pink Dot Club, we talked about a girl named Nicole who died waiting for a heart transplant. Except we talked about her for 1 minute. Only about half the club was listening. The next 20 minutes we talked about Honors English and the teacher for that class. Everyone was listening.

November 9, 2018

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Pleasanton is really smoky today. There’s a wildfire 2 hours away, and as a result the air is filled with smoke. It’s so polluted you can’t see the sun.

When my dad stepped outside today, he said “Is this air quality okay for Justin?” My mom asked me if I wanted to go to school today. I told her I wanted to, but I said I would wear a mask.

When I was staying at the Ronald McDonald House I had therapy sessions with a psychologist, WIth my therapist we discussed about wearing a mask. I told her I didn’t want to wear a mask, since it made me stick out in school. However, I know that i definitely should wear my mask today.

When I got to my class, my classmate told me she didn’t expect me to be at school today. She said that since the air was so bad, I would’ve stayed at home.

December 12, 2018

~ Campjustin ~ 2 Comments

I think I’m losing hope.

My G-tube doctor is going to start me on new medication. It’s going to stimulate my appetite.

Since August, I haven’t gained any weight. If I don’t gain weight, then my G-tube is never going to be out.

I’m so sad.

Everyone can eat! That’s what being normal is. Eating is normal. I’m not normal.

The main reason why I want my G-tube out is because I want to be normal. No one else has a G-tube, so why should I?

Yet.. yet I can’t survive without it. That makes me sad.

I thought I was doing so good. I’m eating and exercising. My health is my number one priority, yet I’m not taking care of it?

I eat before school, at school, right after school, and then a meal for dinner. I even have a cookbook!

And it’s not working!!!

Everyone has opposite problems. Everyone just eats and eats, even if they’re full. I wish I could be like that.

Just because my problem is the opposite from everyone else’s doesn’t mean it’s not any less significant.

I’m also nervous about starting the medication.

When I started the Amiodarone, it interacted with my blood thinners and sent me to the hospital. If somehow the pills interact with my other medications and I need to be sent to the hospital, then that’ll suck a lot.

Of course I can just not take the medication. But I don’t know if I trust myself. I thought I was doing great, but noooooo.

It was predicted that by February I would get my G-tube out, but now it’s not a when but if question. If I don’t gain weight by February then I’ll have to get back onto the feeding.

So what am I going to do about it?

In the Ronald McDonald House, I always pushed my endurance everyday. I have a problem that I can overcome with some work.

For one, I have a scale. I can check my weight. Maybe not daily (I don’t know if I’m dedicated enough for that), but at least more than once a week. Secondly, I can snacks throughout the day. When I’m doing my homework, when I’m sitting in class, or when I’m being lazy.

The future of my body depends on these 4 months between today and March. I need to gain weight.

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