Gobble Gobble!
Hope your Thanksgiving is well and thanks are given.
Donor Network West also created a very touching video for Thanksgiving:
November 26, 2020 – Happy Thanksgiving!
Tag: happiness
March 7, 2023 – Visting Isa
Today my mom and I visited Isa. I have wanted to visit Isa for the longest time EVER! Isa is my model and inspiration. I recently read her book “The Power of Two: A Twin Triumph over Cystic Fibrosis” and it couldn’t have come at a better time. I love Isa because she was born in 1972, 17 years before the gene mutation that causes cystic fibrosis was discovered. At the time her and Ana’s life expectancy was 10 years and Isa is now 52. If Isa can live until 52 when she was expected to live until 10, then I can also live a long life.
What inspires me so much about Isa and Ana’s story is that they not only survived with CF, they also thrived. I couldn’t have picked up this book at a better time because the same questions the book asks I’ve also been circulating in my head. How long do I have? Will this be forever? How do I deal with pain? Am I strong enough?
The strength that Isa and Ana have amazes me. I hope that I can have their wisdom and strength one day. I made Isa paper cranes because Isa currently has cancer. Cancer killed Ana in 2013 and I can’t imagine how Isa is feeling. I watched the TED talk Isa gave after Ana died and she said losing Ana was “the toughest battle of her life.” I was a little nervous to ask, but I did. I asked how Isa got through it and she said her husband Andrew, her friends, and art.
March 17, 2023 – I swam 40 laps today
I swam 40 laps today! This is the first time since my infection, actually… that’s not true. I swam 40 laps when I recovered after my infection but then my heart rate didn’t go down. It stayed at like 110 for an hour after I swam and my doctor told me to hold off on vigorous exercise until we did all testing. After my tests cam back good, I swam for 20 laps. And then like 2, maybe 3?, weeks ago I increased to 30 laps. And today I did 40 laps! And honestly – I felt fine! I also did it in 32 minutes, which means I did around 40 seconds for each lap, which is great! I’m finally getting back into my groove. My mental health is also improving.
This might sound weird, but in a way I’m grateful for this health scare. And now I realize it’s not weird, it’s a blessing. What didn’t kill me did make me stronger. I saw how fragile my life was and how grateful I am for my life. I will never take my life for granted again. It also reminded me that I need to focus on my health. No more pushing my health aside for silly pursuits like school or sex. They of course can have a part in my life but my health comes first, as it should!
March 19, 2023 – Meeting Camila with Miranda
Today I met Camila in Hayward with Miranda. I met Camila at transplant camp in 2019. She reached out to me on IG and I am so happy she did because Oh my gosh! Am I so happy!
We first went to Jollibee and then we got cake at a nearby store. Then we talked in the car and then went to Target. We ended by going to get boba.
I realized how lucky I am to have Camila and Miranda in my life. Of course, Miranda is a blessing. She is my transplant best friend. We have exercised on FaceTime together during the pandemic, celebrated my NYU decision together, and visited Barbara on hospice together. But I have a strong feeling that Camila will also be someone I can call during hard times. She is also someone who had a heart transplant around the same time as me, same hospital as me, and same age as me.
We were walking around Target talking about things. Miranda looked at the baby food and said something about the liquid formulas she had to drink between the times she had the feeding tube in her nose. And Camila said like “yeah, those are disgusting” and I agreed because I also had to drink those nasty ass formulas too! And like… how amazing is it to have all three of us with the same experiences because we absolutely do not relate to 99.99% of the population. I mean, who else can I laugh with about formula and feeding tubes?
Miranda, Camila, me, and another boy named Roque were the “Four Musketeers” in Transplant Camp. I hope Roque is doing well. He’s somewhere near Redding, CA so that’s a three hour drive away. I told Camila we should visit Roque and kick his ass for not visiting us but Camila said he was too far 😩 One day Roque should drive down here so we can kick his ass over here – together!
Camila said we could all write a book. She would have 3 chapters, Miranda would have 3 chapters, and I would have 3 chapters. Miranda said she would need more than 3 chapters. I said the amount of trauma we have between the three of us is absolutely astronomical. It could fill a room!
I also said that we were not done writing our book because there are still pages we need to fill. We have so many pages left and we’re not halfway there yet. Camila is currently experiencing kidney rejection (she had a kidney and heart transplant) for a year now and I don’t know what to feel. I asked Miranda for advice and she said that she thought Camila was fine. Because when you think someone is fine, they are usually fine whereas if you think someone is not fine, they’re usually not fine. I wonder if I should start praying again so that I can pray for Camila. I want Camila to be okay because I need Camila to be okay. She is my fellow warrior and she has not finished writing her book.
I hope Camila doesn’t see this.
