Tag: infection

May 2, 2018

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Okay, so the chair is now where I mainly sit. I don’t want to lay on bed all day because of my hot and cold sensations. If I lay on the bed, I instantly become extremely hot and start sweating.

I have physical therapy every day now. Physical therapy makes me walk a loop around the ICU 3 times a day. It’s hard because my new heart is still adjusting to my body.

My heart pounding just goes crazy when I stand up. At least I don’t hear it always. Before every hour, minute, and second it would go THUMP THUMP THUMP.

When I walk, I have to wear a mask. I can’t get any infections right now. The mask makes breathing harder than it should be.

I don’t poop out much now. The doctors said I had to poop, so they got some guy to massage my butt so I could poop. It didn’t work.

May 5, 2018

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A PICC Line was installed today.

A PICC Line is like a more permanent IV. They put it inside of me the same way they put in an IV: with a needle. However, my Mom and I had to wear caps and masks while they did it. The extra protection has something to do with preventing infection.

They took out the IV in my neck. Or was it a blood pressure monitor? Either way I’m glad it’s out. It’s not the most comfortable thing in the world.

They also replaced the gauze and tape covering my chest tube holes. It’s closing nicely.

A big thing: I transferred from ICU (Intensive Care Unit) to PCU (Patient Care Unit) today. The ICU is mainly where you stay if you’re in critical condition and need constant monitoring. The PCU is where you stay if you’re in better condition and have more privacy.

For me, the PCU is my transition phase between surgery and discharge from the hospital. I can’t wait to be discharged from the hospital (see May 15, 2018). Even though I won’t be going home immediately after, I still can’t wait to get discharged.

May 12, 2018

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I watched Mission Impossible all day. I found that watching movies is a great way to distract from the pain.

At the Lucile Packard Stanford Children’s Hospital there’s a Family Resource Center, where you can rent movies and DVD players. I rented so many movies: The Lord of the Rings trilogy, The Captain America series, The Avengers series, Matilda, and Tom & Jerry. Now I’m moving onto the Mission Impossible series.

For my physical therapy, I walked downstairs to the cafeteria. I bought food at the cafeteria, and ate food outstairs. I can’t eat inside because I’m required to wear a mask in the hospital at all times. I don’t want to go back to my gloomy room and eat. I ate outside, but I’m not supposed to be outside, so I had to find creative ways to sit in the shade.

  • I’m watching Mission: Impossible Ghost Protocol

June 3, 2018 (Sick Pt. 1)

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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.

July 13, 2018

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There was a music festival today at Downtown Redwood City. My sister and dad also decided to visit me today. We went to the music festival, and it was really fun. There was a lot of people and sun, so I tried to sit in a shaded non crowded area. After transplant. I’m supposed to stay out of the sun since I’m more susceptible to skin cancer. I’m also supposed to stay out of crowded spaces in case of infection.

Downtown Redwood City is about a 5-10 minute drive from the Ronald McDonald House. I usually go to Downtown Redwood City because they have a movie theater. After the music festival we watched a movie called Skyscraper. Skyscraper had amazing graphic visuals that almost made up for the plot.

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 26, 2018

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In my Biomedical Sciences class, we were doing a lab of setting food on fire. By setting food on fire, we could test how much energy was in them. However, there was smoke inside the room, and I didn’t want to risk infection so I sat outside of the classroom for the entire class period.

November 12, 2018

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I had a swimming lesson today, but because of the smoke in the air my Mom cancelled it. I live in Pleasanton, 2 hours away from the fire in Paradise, so the air quality is bad. The swimming pool is outdoors. After my heart transplant, I’m not supposed to be in smoky places.

Instead I just walked on the treadmill. In the Ronald McDonald House I used to walk on the treadmill everyday. Today I walked for 30 minutes on 3.0 speed.

November 13, 2018

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I met Amy McCarthy at the school library today.  Amy McCarthy is the library substitute I met at my High School’s club fair (see August 24, 2018). She had a kidney transplant when she was 40.

Today I have a dental appointment. My last dental appointment was February 2018 because I’m not allowed to have a dental appointment until 6 months after transplant. The dentist told me I should brush more. If there’s plaque on my teeth, the bacteria can get in my bloodstream and potentially damage my heart. Now instead of brushing 2 times a day, I’ll brush 3 times a day. It’s a small price to pay compared to the alternative.

Today I couldn’t swim outside. The smoke from the fire is still polluting Pleasanton, so I had exercise inside. I instead exercised on the treadmill:

  • 20 minutes walking on 3.0 speed
  • 20 minutes running in intervals on 4.0 speed
    • 1 minute runs with 20 second rests

I used the exercise technique my swim coach taught me (see November 8, 2018). Exercising in intervals is a great way to build up my endurance. My main focus with exercise right now is endurance instead of speed.

I walked for 20 minutes, and ran for a total of 15 minutes.

November 15, 2018

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I also interviewed Mr. Lewin. Mr. Lewin is my math teacher. He’s the one that told me to write my story (see October 5, 2018).

He’s so nice to me. He told me that it was amazing that I was doing so well socially, academically, and physically. As a teacher, he’s seen other students struggle, but not with anything as life threatening as me. As a teacher, he’s also seen other students with great families, communities, education, and finances, yet they make bad decisions and end up falling to the bottom.

If you’re in the hospital, just know that you need to have hope. Hope is the one thing that’s guaranteed by yourself. When you survive your ordeal, you’ll become stronger as a person. That’s something to hope for.

A student spilled water onto his floor multiple times. The floor is carpet, so mold can grow on it. Mr. Lewin chastised that student, because if I get an infection from the mold, then that’s… bad.

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