Today I went outside for the first time since surgery.
At the PCU there’s a patio overlooking the hospital garden. I went outside to the patio.
It was nice breathing fresh air. The PCU smells because they have to sanitize it all the time. There’s always a smell of clorox bleach and hand sanitizers.
I also liked that it was warm. The PCU is always cold because they have to ensure no bacteria grows. Outside also is bright. Being inside all the time drains you.
I decided to eat my breakfast outside. I had some cheerios, sausage, milk, and hash browns. Even though there’s a lot of pain after transplant, I actually have more appetite. If this continues then I can get my G-tube out.
A G-tube is a tube that is placed through my stomach. I can insert nutrients and calories through it. That’s what I’ve been using for the past 15 years.
I’ve tried to get off the G-tube last year. That was a bad time to try because that’s when I contracted PLE (Protein Losing Enteropathy). Protein Losing Enteropathy is when your body doesn’t absorb the protein you eat. It’s a side effect of a failing heart. I lost a lot of weight during that time. The doctors forced me to get back on my tube feeding.
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.
There’s a farmers market in Palo Alto today. This farmer’s market is at California Avenue. My mom and I decided to go. We bought local grown strawberries, homemade chips, handmade linguine, and Mexican food.
I had to sit down in the farmer’s market because of my heart pounding. After my heart transplant, I’ve been experiencing a heavy thumping from my heart after physical activity. It physically tires me, and it makes me uncomfortable enough for me to not barely focus on anything else. Since my heart was pounding, I didn’t eat much of my Mexican food I bought.
My coughing was better today. It’s not as bad as before. I can soothe it with tea. Luckily the Ronald McDonald House provides free tea.
I made key lime pie with Angela today. Angela is my friend at the Ronald McDonald House. We followed a recipe from AllRecipes. We squeezed a lot of lemons and limes for our key lime pie. Squeezing was okay though because it was fun making the pie.
At the Ronald McDonald House there’s a community fridge where you can give food. Angela and I shared our key lime pie with the community.
My church family visited me. Since today is Sunday, they came after church ended. I’m not radically Christian, but after all that has happened, I do believe miracles happened (see June 13, 2018). My church family was really supportive of my heart transplant.
I also met Joe today. Joe is the father of Nicole. Camp Taylor posted about Nicole (see June 5, 2018). Nicole is in the hospital after complications after her 5th open heart surgery (see September 20, 2018).
Joe is a chef. He had a fast casual teriyaki restaurant chain in Southern California. He built his first restaurant by hand at 18. When Nicole asked her dad to be with him, he sold his restaurant chain to have more time with his daughter. Being in the hospital is a challenge, so you need to have as much support as possible.
Joe and Nicole have place their faith on God. They’re both radical believers. Although Nicole is 8, she has a boyfriend: her pastor’s son. Nicole is loved by God, and she is supported by her church family. When Nicole was in the hospital, her church family went in a circle prayed for her.
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.
My Mom’s friend, Joanna, visited me at the Ronald McDonald House today. Joanna was my piano teacher, and I’m friends with her son, Andrew. We went to eat at Calafia Cafe & Market A Go-Go. We went there because I saw that restaurant on a TV show called Diners, Drive-Ins, and Dives.
When Joanna and Andrew left, I made mushroom cups with Angela. We followed a recipe online. Angela is my friend at the Ronald McDonald House (see June 15, 2018 for her condition). I already made the filling for the mushroom cups yesterday, so I brought it out from our community refrigerator. I put the premade filling into the filo cups and baked it in the oven.
Angela’s family had a BBQ today. I joined in their barbeque and they liked my mushroom cups. I met Angela’s sister and her English teacher. I had a great time with them!
After the barbecue my Dad visited me at the Ronald McDonald House. Dad brought Julia, my sister, too. This is the first time after transplant that I’ve seen Julia. The reason is because UCLA doesn’t start summer break until June 10.
We went across the street to the Stanford Mall to eat dinner. We ate at Tender Greens, a restaurant that serves salad. I couldn’t eat so much since I had to walk to the Stanford Mall. Although it’s across the street from the Ronald McDonald House, that distance is enough to make my heart start pounding. When I do activity, my heart starts pounding. I can feel the thumping in my chest and ears. When heart pounding happens, I’m usually too uncomfortable or nauseous to eat.
Dad visited me today. Julia, my sister, also came. We decided to eat ramen at Downtown Palo Alto. Despite the ramen being good, I couldn’t eat it all. In the car I drank an entire protein shake so I felt nauseous.
These are 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
I set these requirements for myself after transplant so I can recover faster. I need to drink protein shakes because my doctor recommended me to eat more protein. I have a tube inside of me that I used before my heart transplant. Through the tube I would insert nutrient shakes (Nutren 2.0). After my heart transplant, I have an appetite so I can eat my entire day’s calories. If I stop using my tube for 6 months, I can have it removed.
My Dad drove us to California Avenue. California Avenue is where the Palo Alto farmers market is held. My Mom and I went to that farmer’s market and it seemed pretty cool (see June 3, 2018). California Avenue also has a Caltrain station. Caltrain is a public transport train in Palo Alto.
After we explored California Avenue, we dropped off Julia at the Stanford Mall. The Stanford Mall is across the Ronald McDonald House. She wanted to buy clothes at Urban Outfitters.
My Dad and I went to a bookstore in Menlo Park. Menlo Park is a city right next to Palo Alto. The bookstore is Kepler’s Books. We also bought drinks from a nearby cafe, Cafe Borrone.
When we went back to the Ronald McDonald, we met with Julia. We both went to Downtown Mountain View for dinner. Mountain View is farther away from Palo Alto, but their downtown is nice. Mountain View is the headquarters for Google, so you see a lot of young employees in Downtown Mountain View. We ate at an Indian restaurant.
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.
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