Tag: endurance

May 28, 2018

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The doctors told me the reason I can’t walk much is because I have weak lung power.

It’s NOT lung power. It’s endurance.

So what if I get short of breath when I start walking? Everyone gets short of breath when they start jogging. That’s what I’m comparing walking to: jogging. Right now, walking feels like jogging. Your heart beats louder, you get short of breath, and you want to stop. The only difference is my heart rate doesn’t increase.

Before transplant I felt the same thing while running that I’m feeling now while walking. Before transplant, when I ran, my heart beats louder, and I got SUPER short of breath. In fact, I got so out of breath and my heart beat so loud I had to stop. It’s the same thing now (well, actually it’s a milder version), only that now it’s walking. See? It’s about endurance. If I had more endurance I’d still be feeling short of breath, but only during exercise.

June 8, 2018 (Sick Pt. 6)

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My cold was completely gone when I woke up today. Thank you God.

It was on time too. I had a physical therapy appointment today. I take physical therapy because after my surgery everything is sore. I have to readjust to my new heart and become more flexible. After heart transplant, even sitting down was hard.

My physical therapist is pregnant and will be delivering in a month, so that’s pretty cool. I’ll get another physical therapist when she’s on maternity leave.

June 11, 2018

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Angela and I made chocolate chip cookies today. Angela is my friend at the Ronald McDonald House. Cooking is a good way for me to push my endurance. We both made chocolate chip cookies, but there were extra chocolate chips so Angela’s mom made some modified cookies. After our chocolate chip cookies were done baking, we shared it with the other families at the Ronald McDonald House.

Joe made lobster rolls today. Joe’s daughter, Nicole, is in the hospital after her 5th open heart surgery had complications (see September 20, 2018). As a result, her family has to stay at the Ronald McDonald House while she’s being treated.

I helped him make them. After the lobster was done cooking, he tasted them, and found out they went bad. Joe had to drive back to the store to buy shrimp for the rolls instead. It was fun making food with Joe.

June 15, 2018

~ Campjustin ~ 2 Comments

I like to cook at the Ronald McDonald House. It’s a good way to get some activity into my day and meet/talk to new people. However, since I experience heart pounding cooking is difficult.

After transplant, I have a sensation of heart pounding. It’s when I can do as little as walking across a room and my heart starts pounding. I can feel it in my chest and I feel thumping in my ears. It’s not as bad as when I was in the hospital, but it still inhibits the amount of activity I do. That’s why I want to push my activity levels every day. If I do more activity, I raise my endurance levels. That’s why I walk on the treadmill everyday and cook often.

I’m planning to cook mushroom cups with Angela. I got the recipe online. Angela is my friend I made at the Ronald McDonald House. She’s at Stanford for treatment of her liver. She can only eat 20 grams of protein per day. 20 grams of protein is nothing. An egg has 6 grams of protein, so she can only eat under 4 eggs each day.

My mom took me to Safeway for ingredients of the mushroom cups. Mushroom cups are cooked mushrooms in a cream cheese mixture stuffed into filo cups. I bought mushrooms, heavy whipping cream, and filo cups. When I came back, I cooked the filling with Angela. We diced the mushrooms and cooked it with the whipping cream. After the mixture was thickened, we saran wrapped it and stored it in my room’s refrigerator overnight.

June 24, 2018

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Today there’s a Stanford run for kids. The Lucile Packard Children’s Hospital is hosting a 5k/10k run, and the money will go to the hospital.

I didn’t participate. My heart pounding is still very strong. In case you didn’t know, I have a heart pounding sensation after transplant when I do minor physical activity and my heart starts to heavily beat. I could walk as little as 100 ft and have to sit down. Also, I don’t have much endurance. After my transplant, my heart has to readjust to my body, and it hasn’t yet. I try to push my endurance often, but doing a 5k is too much.

My Mom did. She told me that she met the doctor that took care of me in the PCU (aka a doctor I can remember).

June 24, 2018

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I walked with my mom to downtown Palo Alto today. The Ronald McDonald House is a challenging (for me) yet reasonable distance from Downtown Palo Alto. Since I need to build my endurance, I always take a chance to walk to Downtown Palo Alto.

We ate New Orleans food at NOLA in Downtown. I loved NOLA’s atmosphere and their food was great.

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 10, 2018

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Today I had my physical therapy appointment.

After transplant, I had to do physical therapy everyday in the hospital. My physical therapy included stretches and walking around the hospital unit three times a day. Exercise was a LOT harder immediately after transplant than before transplant, but I knew that the more exercise I did, the faster I would be out of the hospital. So I walked around the hospital unit three times a day, and then four times a day. Then I walked around the entire hospital and played in their garden. My theory was right because I got out of the hospital about two and a half weeks.

If you remember my daily requirements:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

Exercising on the treadmill and walking 10,000 steps is part of my physical therapy, but everyday I also stretch with some stretches the physical therapists give me. Sometimes I swim, but I’ll do more of that once I get out of the Ronald McDonald House.

July 11, 2018

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Today my Mom and I decided to go swimming at the Palo Alto YMCA. Before transplant, I was too weak to even exercise. I tried to swim, but 10 laps was all I could handle in an hour. However, during transplant education they said I could be able to play sports once I had a new heart. Now that I have my heart transplant, I can finally swim.

We brought Orion (pseudonym), another patient at the Ronald McDonald House with us. They’re from Hawaii, and they’ve been at Stanford multiple times. Orion loves the feel of water because it loosens up his joints. Ever since his brain tumor, he’s gained weight that’s been putting pressure on his joints.

I tried swimming, but I didn’t have as much endurance as I hoped. Nonetheless, I feel that I can improve on my swimming. Also I’m only 2 months out of transplant, so I should still be in recovery.

I had a great time swimming with Orion today. The YMCA is much better than the Stanford University pool, which I used before. Since The YMCA is also an inside pool, I don’t need to worry about the sun and skin cancer.

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.

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