Tag: immune system

May 27, 2018

~ Campjustin ~ Leave a comment

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.

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.

October 4, 2018

~ Campjustin ~ 2 Comments

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 12, 2018

~ Campjustin ~ 1 Comment

I talked to my Biomedical Sciences teacher today about my 504 plan. Biomedical Sciences is a class that explores the medical field and diseases, which is a great way to learn more about my heart condition.

I told him what I told my teachers. About what I needed. But he asked me how I felt. How do I feel before vs. after transplant? I told him that life was much easier. An example I used was sports. I couldn’t imagine how my classmates could run for 3 miles without throwing up, or run to the bathroom without being out of breath. Now I feel a new endurance I haven’t felt before. The doctors told me it was energy, but I think its endurance. More endurance to eat, more endurance for activity, or more endurance for daily activities.

The teacher asked me if I was okay with sharing my experiences later in the school year when we learn about heart disease. I told him yes, I’d love to! First the teacher passed out the germ free classroom handout (see October 4, 2018), then announced that I was the person that was immune compromised. He allowed me to explain my heart transplant and why being immunocompromised is important.

November 6, 2018

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The results from my labs are back. My prograf levels are great. I’ll decrease my prograf to 0.5 mg in the morning and 1 mg in the evening. We’ll check the level in a week.

In other words, my immunosuppressants are working great. My doctors are going to reduce the amount of immunosuppressants I take.

November 14, 2018

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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

August 26, 2019 – 504 Plan

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Another Monday, another school week. Ewwww.

Anyways, I had my 504 plan today. My last 504 plan was on October 4, 2018, so I was surprised that this one was so early in the school year. Also, the school didn’t inform me that my 504 plan was today?!? I just found out yesterday when my mom and I were fighting when she yelled “Y’know, why don’t you just not come to the 504 plan tomorrow!”

The reason I have a 504 plan and not an IEP is because a 504 plan is added modifications to your academics while an IEP is a completely customized education. 

As expected, not all my teachers were there. Of the group attending was my AP Psychology teacher, US History teacher, vice-principal, school nurse, and school counselor. 

So it was the same old, same old. Just the usual stuff:

  • Flexibility for missed assignments and schoolwork for days missed
  • Unlimited bathroom trips
  • Ability to change seats if students nearby are coughing or sick
  • Sunscreen applied regularly stay out of sun

Last year was the tricky year. Since I was so fresh out of transplant, I was so sensitive to diseases and getting sick. When ever someone coughed in the classroom, I would avoid them like the bubonic plague.

I don’t anticipate this year to be as tricky. I feel that it’s going to be easier, and that I have a lot more freedom.

What’s different about this year is that I have a full schedule instead of the five periods I attended last year (10th grade) and ninth grade (the grade I was in heart failure). 

Pre-transplant I could take my medications roughly in the morning and evening, but now my meds require to be timely. I take my morning meds in first period (8:45 AM), but no one minds because everyone minds their own business.

I mean, who would be like “Oh my god, he takes meds! Hahaha!” High school kids are mean, but they’re not THAT mean. I feel like the only people who would say that are people who don’t have lives.

March 6, 2020 – I’m going to online school

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Hi guys, so sorry for the inactivity on my blog.

I’ve decided to transfer to James Madison High School.

Due to the coronavirus, I don’t feel safe at school anymore. My type of school would have students come even if they’re sick.

I think it’s just better to be cautious. Since I’m immunosuppressed, I really can’t be risking this.

Even though it’s not horribly bad in Pleasanton, I have a feeling that it’s going to get a lot worse.

So I did my research on online schools, and I’ve decided to attend James Madison High School. The school is concurrent (year-round enrollment), affordable, and has a modern layout.

I’m starting the withdrawal process today.

May 29, 2020 – I’ve graduated!

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I have some really exciting stuff to share… I’ve graduated! I know it’s crazy, but I’ve graduated from high school, and one year early too! Ever since the start of the coronavirus, I’ve transferred to James Madison High School, an online high school. James Madison High School is self paced, which means they give you the option to work as slow or as fast as you want.

When I have an opportunity in front of me, I never let it pass. I made the decision to accelerate through my classes and did! I’m really proud of myself for graduating a year early, because it means more time for my bachelor’s degree!

Because of the coronavirus, I’ve decided not to go to a four-year university. It’s just not worth paying full tuition for online classes. Instead, I’m going to save money and start at community college. My plan is to stay at community college for a year, and then transfer to university for Fall 2021.

As for the graduation ceremony, James Madison High School has one planned for September. Again, I’m not going (immunocompromised here). It’s alright, since the graduation ceremony isn’t that important to me anyway.