Tag: leg pain

July 6, 2018

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I also bought books, had a physical therapy appointment, and went to a bike shop.

Before my physical therapy appointment I bought books at Kepler’s Books in Menlo Park. Kepler’s Books is the bookstore I’ve mainly been going to when I’m staying at the Ronald McDonald House. I bought “The Empress” by S.J. Kincaid. I wanted to continue from the first book, “The Diabolic”, in her series because I liked how cunning the main & secondary character is and reading about the plot of toppling a powerful dictatorship. I also bought “The Testing” by Joelle Charbonneau because it combined The Hunger Games and the college application.

After buying books, I went to physical therapy. I talked to my physical therapist about how I was walking 20 minutes a day on the treadmill. I started walking 10 minutes, but then I gradually went to 20 minutes. I walk on 3.0 speed. I talked to her about running on the treadmill, and she told me if I was to run, I should do it on 4.0 speed. Moreover, I should be careful when running.

Last year I was sent to the hospital for leg cramps. My leg cramps were in my right and left calves, but they hurt devilishly awful. The doctors predicted that my blood thinning medication, Coumadin, interacted with my arrhythmia medication, Amiodarone, and caused swelling in my calves. Turns out amiodarone has a ton of side effects, so that sucks. After I was released from the hospital I was homeschooled for a month and a half before I could return. In site of not taking the medication anymore, my calves are still sensitive and will cramp after exercise.

My physical therapist asked how I was doing with my stretches. Before I left the hospital, they gave me a list of stretches to do everyday. I told her I was doing well with them, since I continue to follow their stretch everyday.

After my physical therapy appointment, I went swimming (see same post today). After swimming I went to a bike shop. My mom bought my bike from my house in Pleasanton to the Ronald McDonald House. I’ve outgrown that bike so we went to the bike shop to have it altered. At the bike shop they adjusted it, but my mom asked me if I wanted a new bike instead of my old bike. With a new bike I could bike faster and easier.

I told her no because I won’t be biking much in the Ronald McDonald House. I appreciate her offering though, a new bike is a lot of money! Since I want to focus on swimming and running, I don’t want to add the burden of biking. When I go home, I can start biking.

July 14, 2018

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Today Nicole’s dad prepared a meal for her church family. Nicole is a girl that’s been in the hospital since May. She was born with a non functioning right artery, and ever since she’s had to replace it with a mechanical one. This was her fifth open heart surgery, but after complications, she’s still in the hospital. Hopefully she gets out soon (see September 20, 2018).

Nicole’s dad is a chef. He built his first restaurant at 18, and started his own restaurant chains. However, when Nicole got sick, she asked for her dad to be with her. He sold his restaurant chains and left Los Angeles just to stay with Nicole.

Every Saturday my Dad visits me at the Ronald McDonald House. He takes me out to have fun for the entire day. Downtown Palo Alto is a walkable distance from the Ronald McDonald House, and at Downtown Palo Alto is a Caltrain station. Today we took Caltrain to Sunnyvale.

We got to the Caltrain station an hour earlier than the next departure, so we decided to get drinks at a cafe in Downtown Palo Alto. Downtown Palo Alto has a lot of restaurants to enjoy, and their own Stanford theater (see July 20, 2018). There’s a famous restaurant, Ramen Nagi, at Downtown Palo Alto (see July 17, 2018). From the Ronald McDonald House to Downtown Palo Alto is wheelchair accessible.

We took the train to Sunnyvale. There’s steps to board the train if you decide to take it. Since I have to stay at the Ronald McDonald House for 3 months, I want to make the most out of my time. I loved watching the passing scenery.

Downtown Sunnyvale isn’t as big as Downtown Palo Alto. Notwithstanding it’s still very impressive. Across the Downtown Sunnyvale Caltrain station is an impressive plaza. Downtown Sunnyvale also has a street that’s called the Historic Murphy Avenue, and it’s extremely beautiful. It reminds me of Downtown Mountain View. You can also check out that place with Caltrain.

Going from Downtown Sunnyvale we took Caltrain back to Downtown Menlo Park. At Downtown Menlo Park I bought a book from Kepler’s Books. The book I bought was The Testing, a book about an intense college competition after the apocalypse. It’s similar to The Hunger Games; teenagers fight each other for a better life.

From Downtown Menlo Park we walked back to the Ronald McDonald House. I was so glad to be back because I walked a lot. I needed to rest for a while. Last year I was in the hospital for a week for calf pain. Ever since then I take Tylenol when my calf pain flares up. Today was a strenuous day, so I took tylenol. I ate my dinner at the Ronald McDonald House.

September 28, 2018

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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 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.

December 7, 2018

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I had a doctor’s appointment at Lucile Packard Children’s Hospital today.

We left Pleasanton at 8 AM. We arrived at Stanford just in time for my 9:45 AM appointment. We checked vitals first, then I had my echo done. An echo is short for an echocardiogram, which is a test that takes pictures of your heart. It’s like an ultrasound for the heart.

After the echo, we went to the clinic. The clinic is the part of the appointment when you talk to your doctors. Everything is great. My sneezing is okay. I don’t think I’m sick.

My Prograf levels are also great. The level is 6.3, and my goal is between 6 and 8. I’m taking 1 mg of Prograf in the morning and 0.5 mg of Prograf in the evening.

In translation, my immunosuppressants are doing their job well. My immunosuppressants also have a range, and that range tells us how much immunosuppressants are presents in my body right now. My blood is checked regularly because we want that range to fluctuate.

I also noticed that I haven’t had leg pain for a while now. Leg pain refers to when I have pain in my calves. Before my heart transplant, my leg pain was so bad that I had to stay at home for a month.

My psychiatrist also came in. If you remember, in the Ronald McDonald House I had a psychiatrist that I had to meet with every Friday for 5 weeks (see May 22, 2018). Well, that psychiatrist graduated, so I have a new one. Anyways, I told her that everything has gotten better since the first day of school.

The doctors said I could go to transplant camp over the summer. If you remember the transplant reunion (see August 11, 2018), a girl mentioned transplant camp.

Anyways, after my appointment, I ate at the hospital cafeteria. The hospital also opened their gift shop and I bought a jacket there. Afterwards, I went home.

January 3, 2019

~ Campjustin ~ Leave a comment

I had leg pain today.

I don’t know what triggered it, but I had leg pain, again, today.

I followed my usual routine for when I have leg pain: take 2 Tylenol, and the pain goes away.

I wonder, is it possible to develop an immunity towards Tylenol? I know bacteria can develop immunities towards antibiotics, so can my pain get so used to Tylenol that it  won’t affect me anymore?

I wonder…

January 26, 2019

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So today was my first lesson with a personal trainer. If you’re thinking: wait, don’t you already do swimming? Yes, I do. I also want to do training, and you can read about that in my January 15, 2019 journal entry.

First he took my body composition. I stepped on some balancing board and it took my body composition.

Then he talked about what my goals were. I have three goals:

  • Weight gain
  • More muscle
  • Better strength

He said more muscle was such a boy thing to do. Lol, it is.

I told him my restricted areas were my legs and chest. The legs because of my leg pains and chest because of my scar.

He said we would definitely avoid my chest, but told me we should still exercise my legs. I was unsure, but he said the legs are unavoidable.

We didn’t really do anything today.  He introduced me to the TRX machine and modified treadmill. It was pretty easy.

The schedule is to meet every two weeks on Saturday. He’s busy every other Saturday, so it gives me time to rest.

So far, so good.

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