Tag: other patients

October 10, 2018

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Brayden got his heart today.

In this video, https://www.youtube.com/watch?v=kHztirA23S8, it introduces Brayden, a boy from Bakersfield with heart failure. His mother said November 2009 the doctors said Brayden wouldn’t live until the summer if he didn’t have a valve replacement. By valve replacement, they mean replacing his aortic valve with an artificial mechanical one. “Following complications from being on life support, doctors said he may never have the energy to walk again.” This video follows Brayden on his first day of school, an amazing milestone which the family didn’t think was possible. After he gets his heart transplant, he wants to go on a cruise, go hiking, run, and play sports. In this video, https://www.youtube.com/watch?v=uEpAkWI_49U, it talks about how Brayden is now full time staying at Lucile Packard Children’s Hospital. Most specifically, it talks about one post about how Brayden “wants to get a map of 50 states and get a badge from all 50.” To pass time, they want to collect local police badges while he waits for his heart.

The boy that defied all odds against the doctors, lived to have his heart transplant. At 1 AM, his mom posted a live update on FaceBook saying that his heart had finally come. brayden is supposed to stop eating in one hour, but he doesn’t want to eat now.

Follow his updates on FaceBook.

October 30, 2018

~ Campjustin ~ 1 Comment

Today was another Pink Dot Club meeting. We made art kits for children at the UCSF Benioff hospital. Maddy brought plastic bags, brushes, mini canvases, and paints. We decorated the bags with stickers. The stickers said “You’re the best!” or “Love!” or “BFF”.

In my Biomedical Class we were talking about a project about how to introduce to a person they have a medical disease. If you’re reading this blog, then you’ve probably experienced this before. In reality a doctor just talks to you and says you have …. However, in our class we’re supposed to make an Instagram post or a song for the patients. Which is totally weird.

My teacher talked about his sister and mom going in for their breast cancer surgery. They met with a bunch of doctors and surgeons to remove the cancer. It was devastating for them.

I raised my hand to share my experience. Here’s my experience going in to be evaluated for the transplant list:

My mom told me I needed a heart transplant in the car. It was undoubtedly shocking. I couldn’t believe I was THAT sick. I wasn’t dying in a hospital, I was a normal person. My mom explained that she and Dr. Saba were talking about transplant for a couple of moths.

The official evaluation was at Stanford. I had to meet with a child psychologist, nutritionist, social worker, and doctors. The saddest part of the evaluation was the transplant education. Someone from the transplant team talked with me about what transplant was, how it works, waiting for transplant, and after transplant. I learned about rejection, the statuses, and my risk for cancer. The transplant education was so despairing that my heart started to act up. I never told her because I didn’t want to be deemed as not ready for transplant.

After the education I was rejected from the list. It was understandable; I was too healthy. A lot of the kids on the list need it more desperately than me. I was re evaluated for the transplant list on April 10, and they let me on as a status 2. The list has different statuses: 1A, 1B, and 2. 1A is the people that need it the most while 2 is the people that need it the least. Since Lucile Packard Children’s Hospital didn’t have a status 2 transplant for 4 years, I was on there for a taste of being on the list. It was highly unlikely I would get a heart.

2 weeks later I got the call.

November 15, 2018

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The Pink Dot Club recently announced that the UCSF Benioff Children’s Hospital is asking for videos that their patients can watch. Since the patients are in the hospital, they want something to do.

I think that I can make a big impact by creating a video. If I share my story, those patients will know that they’re not alone. If I made it through this, then they can too.

I decided yesterday that the main theme of my video will be about “stories”. Today I asked my classmates to tell their own stories. I can edit all these stories into a video compilation, and it’ll basically send a message of “This will be you” (see November 25, 2018 for the video).

November 16, 2018

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School was cancelled today due to the smoke. There’s a wildfire two hours away, and as a result our area’s air quality is horrible. Since my school is mainly outside, they don’t want the students contract lung problems (I doubt they will). Also, there was a petition online to close all of our schools today.

It gave me even more time to work on my UCSF Benioff Children’s Hospital video (see November 15, 2018 for info)(see November 25, 2018 for videos).

November 25, 2018

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Stories From Foothill High School – This Is My Story #1

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Justin’s Story – This Is My Story #2

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Yes! I’ve finally finished my videos for the UCSF videos (see November 15, 2018). Unfortunately, they’re 2 videos each about 12 minutes. The Pink Dot Club just posted that the UCSF videos can only be under 5 minutes. I’m hoping that UCSF will make an exception because:

  1. They’re hearing from a relatable person who has been in their situation
  2. I’m a success story, which should bring them hope
  3. I have messages and advice for them
  4. It’s pretty well edited, if I do say so myself

December 23, 2018

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I was wrong about Maddy.

Today I went to Happy Lemon to meet up with Maddy, the Pink Dot Club president. The Pink Dot Club is an organ donation club at my High School.

Remember October 2, 2018? That was the Pink Dot Club meeting which was supposed to be dedicated to Nicole. When Maddy glossed over the fact that Nicole died to talk about a class instead, I got mad.

Here’s an excerpt from my journal entry:

Club officers, that guy that got sent to detention because he confessed that he hated Ms. Hewitt or whatever has nothing to do with the club. Yet you spent more time on him than Nicole during the meeting that was supposed to be dedicated to her. Club officers, that guy is alive. He is breathing, he is eating, he isn’t in pain. Nicole is dead.


Club officers, I wonder how much you even care about your own club. Why are you officers of this club, when you can’t even dedicate a meeting without talking about your AP classes? Oh wait, I know! College! Club officers, you’re only here because you want to get into a good college. None of you care that a 10 year old girl is dead, you only care that it’ll look good on your college applications.

Yeah, that’s a little passive aggressive. Or just aggressive.

Later that day I emailed Amy McCarthy, someone who had a kidney transplant. This is another excerpt:

I thought the Pink Dot Club (the transplant club at Foothill) would be different but it’s exactly the same. Even the club president cares more about her 4 AP classes than she does about the patients at Stanford and UCSF.


Sometimes I feel like I want to drop out of school. I don’t want to be surrounded by people talking about APs or Colleges or Test Answers or SATs. It makes me angry how everyone only cares about themselves: what grades they have, what classes they have, what friends they have!

Reflecting back, I wasn’t angry because they ignored Nicole. Deep down inside, I think I was mad because I would never fit in with them.

If they glossed over Nicole’s death, then it implies they care more about their classes than someone that just died.

And their entire premise is for organ donation, and helping those waiting for an organ.

If they don’t care about organ donation, then where do I go?

Well, I was wrong. Or at least about Maddy.

Maddy is doing the Pink Dot Club because she wants to, not because of college. In fact, she didn’t even have college on her mind when creating this club.

It was because her cousin (who’s also named Justin) died from a heart disease.

I thought, “Her cousin just gave her the idea, but she did this for college.”

I was wrong, so I’m sorry Maddy.

January 3, 2019

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Kayano’s kidney came today!

If you remember, Kayano was my next door neighbor at the Ronald McDonald House (see July 3, 2018 for his birthday).

This is amazing. Kayano has been at the Ronald McDonald House since May, and he really deserves his kidney.

After his transplant Kayano can finally go home and go back to a normal life. That’s awesome.

Kayano’s life today will change forever. After his kidney transplant, he’ll experience sensations he has have never experienced before, and be able to do actions he’s never done before.

Waiting is the hardest part, but they got through it.

They got through it! Woohoo!

Kayano has a great life ahead of him. I can’t wait to see what’s in store for him.

March 7, 2019

~ Campjustin ~ 1 Comment

Even though it’s Wednesday (and not Tuesday), the Pink Dot Club met today during lunch. There was a guest speaker, and we got to meet him.

His name is Rob Floss, and he had a heart and kidney transplant! That’s crazy, a double transplant!

I can’t imagine the pain he’s gone through. First a heart, then he goes under the knife again for a kidney.

He has type one diabetes. If you don’t know, type one diabetes is the type of diabetes you get as a kid. It’s not his fault that he got type one diabetes. Eventually his diabetes got out of control, which is also not his fault. He’s old, so it was back in the time without regular insulin tests and constant insulin pumps.

First, he had kidney failure. He eventually got a match and a relative willing to give up a kidney for him. Then, he had heart failure. He had to wait for a heart transplant until he could have a kidney transplant.

I asked, “What do you do to stay healthy?” and he said, “Happiness is the best health.”

… okay

He was more concerned with my donor’s family than my story, which I thought was different.

I mean, the patient’s story is so interesting! But then I realized he was from Donate Life and was trying to sign up Organ Donors.

Anyways, I have his number now. I might text him to see how I can get this blog affiliated with Donate Life.

March 23, 2019

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So today I went to Starbucks to meet with Maddy. We’re doing another faux 73 Questions with Rob Floss (see March 7, 2019).

I learned today that he doesn’t really take care of his health. He doesn’t do any exercise! The only thing he does is take care of his nutrition, which he obviously should, considering his diabetes.

Now, I know that it doesn’t have to be super strict, but he literally had a double transplant. He should really be doing more than taking meds and watching out for “nutrition”.

My grandma is 90 and she does EVERYTHING to take care of her health. Everything is physical therapy: walking back and forth in the hallway, balancing on a balance board, and putting her legs up and down.

So I’m not going to take his age as an excuse.

He said, “Happiness is the best way to take care of your health.”

Uh-huh.

He also told me that he sometimes ate rare steak, ate sushi, and drank alcohol.

He said, “You need to have a life.”

I’m sorry, I need to have a life?

That’s as dumb as a smoker saying, “You need to be cool.” Okay, maybe that’s a bit of an exaggeration. Yes, I admit it’s okay to slip up every now and then, but don’t make excuses for it!

I’m trying to live longer than 15 years, so I have to be very strict.

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