Galen Dahl

July 27, 2019March 14, 2020 ~ Campjustin ~ Leave a comment

General Questions

How old are you?

Where are you from?

Menlo Park, CA

Transplant

What was your transplant?

heart, received May 2005, when he was 2

What was your condition that led to the transplant?

restrictive heart cardiomyopathy

What can you do now after transplant?

Surprisingly, a lot of things. I can do anything except contact sports. If I tried, I could have more stamina.

Are you glad you didn’t remember your transplant?

I think so. It probably would’ve been pretty scary.

Donor

Do you know your donor?

No.

Do you wish you knew your donor family?

I think so. I think it’d be pretty interesting and nice to meet them.

Were there any complications after transplant?

Yes. I have to do biopsies to check my rejection. During my last biopsy it touched my atrium wall and my heart stopped. I had to stay in the hospital overnight so they could check me.

Are you living an active lifestyle?

Yeah. I am a ski coach for a ski resort.

What are you most excited about after being healthy?

I don’t really know I guess. I get to be a pretty normal kid and not different from others.

Do you consider yourself normal?

Sometimes. I definitely think I have it better than the other kids here.

What would you say to people considering to be an organ donor?

Thank you, I guess. It’s a good thing to do. Very generous.

Doris Diaz

July 27, 2019March 14, 2020 ~ Campjustin ~ Leave a comment

General Questions

How old are you?

Where are you from?

California

Transplant

What was your transplant?

double lung, received June 4, 2014, at 9

What was your condition that led to the transplant?

cystic fibrosis, which is genetic

What was life like before transplant?

It was… I definitely was separated from other kids.

Doris didn’t play on a playground. She carried a tank and people wondered. Doris was also weak.

How long did you wait for your transplant?

1 year

How was the road to recovery?

It took a while. I was in a coma for about a week. The whole process took about 3-4 months.

What can you do now after transplant?

I go to public school – a charter school. Now I get to play sports like other kids and be free.

Why do you think you’re the only lung transplant recipient in this camp?

Well, other than it being rare.

A pediatric lung transplant is rare. 1 in 39 pediatric patients waiting on the list for a lung transplant receive it. The older you get, the worse cystic fibrosis hits you. Most people get to 18 and that’s it.

Doris’s friend was 15, and he died then. Cystic fibrosis is also not well known.

The thing that gets me irritated is that doctors wait until you’re dying – dying to place you on the list, and once you’re on the list you don’t know how long it’s gonna take.

Why do they wait so long?

Just because so many other people need lungs – such as smokers and cancers – they put it off. They think you have time, unlike others.

Also, finding the perfect size is hard.

What can combat that?

Honestly, I think that everything has been done pretty good.

Doris also wants more advocacy for cystic fibrosis.

Every treatment you take away from her, every day you’re taking from her life.

Do you feel isolated?

Yes, that’s the word.

The people I do relate to don’t last that long.

Braylin Soon

July 27, 2019March 14, 2020 ~ Campjustin ~ Leave a comment

General Questions

How old are you?

Where are you from?

Portland, Oregon

Transplant

What was your transplant?

liver, received May 30, 2014, when she was 8

What was your condition that led to the transplant?

autoimmune hepatitis

What was life like before transplant?

A lot like I was now, but I was happier

How long did you wait for your transplant?

2 weeks

How was the road to recovery?

It was very easy. I don’t remember exactly how long I was at the Ronald McDonald House but it was at least 2 weeks. They did a lot of stuff to make sure I didn’t break down or anything. My parents made sure I didn’t go back into rejection.

What can you do now after transplant?

I can do lots of things, but I can not do a lot of things. A lot of jobs I can’t do: I can’t be a police officer, I can’t even be in the science department of the police.

What are you most excited about after being healthy?

I am most excited to live my life. So far I haven’t had any major health complications, and I’m really healthy. So I’m excited that I can do anything in the future.

Donor

Do you know your donor?

No.

Was it a male or a female? How old were they?

Female, 6.

Do you want to know your donor family?

Yes, very badly.

Because I want to know why they donated their daughter’s organs and see if they also donated their heart, kidneys, or other organs and thank them for not letting me die.

What do you do to celebrate on your transplant date?

A lot… dinner. A very good dinner. We do a really nice dinner and then a yearly post on Facebook.

What would you say to someone considering to be an organ donor?

Do it because it saves lives, literally. And it’s a good thing to do. Giving someone your organ is really awesome.

Did you give your liver a persona?

I call my scar my mustache. My drain tube is my second belly button.

August 12, 2019 – First Day of School

August 12, 2019September 1, 2019 ~ Campjustin ~ Leave a comment

11th grade!

It’s the year in high school that colleges look at. Everyone around me is doing crazy stuff, while I’m here just taking it easy.

On one hand, I’m glad to be back in school because school is awesome, but on the other hand, I was lying and school sucks.

High school sucks (honestly). I’m not going to name any names, but there are some fake people and I can’t stand them.

I don’t anticipate this year to be as bad as last year. I was really cautious in 10th grade because I was so post-transplant. Now I’m one year out, and I’m much better.

Actually, I have high hopes for this year. I accomplished a lot last year: launching my blog, releasing my cookbook, and appearing on TV . Who knows what I’ll accomplish this year?

August 20, 2019 – Hi Mr. Lewin

August 20, 2019October 2, 2019 ~ Campjustin ~ Leave a comment

Today I visited Mr. Lewin at his classroom after school. I wanted to check up — well, not check up. I shouldn’t say that. More like say “hello” and tell him I was doing fine.

He was excited to see me! And I was excited to see him.

I told him everything, well, everything except Tasty. I wanted to tell him later.

But I told him how I met Donor Network West, me speaking at Sonoma for Make-A-WIsh, and transplant camp. After I updated him about my summer, he said he was glad to see I was doing great.

Mr. Lewin told me I was glad I stopped by because he was thinking about me sporadically over the summer. Just yesterday, he was talking with someone about heart failure and he thought, “Oh wow, I know someone like him!”

I’m planning to see him a week later and tell him everything about Tasty. I can’t wait to see his reaction.

August 21, 2019 – Brayden Died

August 21, 2019November 1, 2019 ~ Campjustin ~ Leave a comment

Brayden died? Brayden died.

I just heard of his death today. My mom told me in the car. But he didn’t die today, he died on November 7, 2018.

I had to scroll down on his Facebook page, Brayden’s Brave Heart, to find the date of his death, and it broke my heart.

Even after his death, his Mom posts daily with pictures of Brayden and reminiscing about his time alive. And not only that, Brayden has impacted so many others. Did you know that they found a stone in Hawaii with #BraydensBraveHeart written on it?

I used Brayden in my YouTube video as an example of why you should donate. I made him a prime example of the success of organ donation.

All this time, I’ve been advocating that life will always be better after transplant. I’ve been doing that even though my doctors always emphasized “transplant is a treatment, not a cure.”

Brayden deserves better. He deserved to live.

He’s fought so hard to be alive. Why is life so unfair.

Brayden was always impacting lives. Even after death, he’ll be impacting lives. He’s impacted mine. 🙏

August 24, 2019 – Donor Network West Ambassador Training

August 24, 2019November 1, 2019 ~ Campjustin ~ Leave a comment

Today I had my first official Donor Network West ambassador training.

It’s been long overdue. We put it off for such a long time, and I think since June? Ever since the cookbook release, Cathy has been asking me to be an ambassador. An ambassador, according to Meghan, is just a fancy term for a volunteer (June 30, 2018).

It was quite upsetting I had to wake up early on a Saturday instead of sleeping in, but it’s alright.

I’m so proud of myself. I already knew a majority of what Anyanna said because I’ve been so involved with Donor Network West.

Since only two people signed up, it was a webinar instead of a face-to-face meet and greet, but that’s fine. When the actual webinar started, there were actually more than two people. Cool!

I’m excited to be an ambassador. Now I have an official title! 🙌 I can put “Donor Network West Ambassador” on my business cards (I’m thinking of getting them).

August 26, 2019 – 504 Plan

August 26, 2019August 31, 2019 ~ Campjustin ~ Leave a comment

Another Monday, another school week. Ewwww.

Anyways, I had my 504 plan today. My last 504 plan was on October 4, 2018, so I was surprised that this one was so early in the school year. Also, the school didn’t inform me that my 504 plan was today?!? I just found out yesterday when my mom and I were fighting when she yelled “Y’know, why don’t you just not come to the 504 plan tomorrow!”

The reason I have a 504 plan and not an IEP is because a 504 plan is added modifications to your academics while an IEP is a completely customized education.

As expected, not all my teachers were there. Of the group attending was my AP Psychology teacher, US History teacher, vice-principal, school nurse, and school counselor.

So it was the same old, same old. Just the usual stuff:

Flexibility for missed assignments and schoolwork for days missed
Unlimited bathroom trips
Ability to change seats if students nearby are coughing or sick
Sunscreen applied regularly stay out of sun

Last year was the tricky year. Since I was so fresh out of transplant, I was so sensitive to diseases and getting sick. When ever someone coughed in the classroom, I would avoid them like the bubonic plague.

I don’t anticipate this year to be as tricky. I feel that it’s going to be easier, and that I have a lot more freedom.

What’s different about this year is that I have a full schedule instead of the five periods I attended last year (10th grade) and ninth grade (the grade I was in heart failure).

Pre-transplant I could take my medications roughly in the morning and evening, but now my meds require to be timely. I take my morning meds in first period (8:45 AM), but no one minds because everyone minds their own business.

I mean, who would be like “Oh my god, he takes meds! Hahaha!” High school kids are mean, but they’re not THAT mean. I feel like the only people who would say that are people who don’t have lives.

August 26, 2019 – “Mr. Peterson”

August 26, 2019August 31, 2019 ~ Campjustin ~ Leave a comment

What I love about my schedule this year is that I have the same teacher I had in ninth grade.

I’ll call him Mr. Peterson. Mr. Peterson was my biology teacher in ninth grade, so he saw the craziness that happened that year. If you don’t know, ninth grade was when I returned into chronic heart failure.

He remembers how I sporadically missed chunks of school. I remember dragging my backpack to the ER because I was so dedicated with keeping up my grades.

I saw the emails my school counselor sent out after I got out of surgery. Mr. Peterson said I didn’t need to take the final because I “would get an A on it anyway.” I think his email is what set off the chain of emails from my other teachers saying I didn’t need to take the final.

Right after school started last year (sophomore year/10th grade) I visited him to say hi and tell him I was healthy and okay.

Although I already completed Biology, I’m on the biomedical sciences pathway in my school so I’m taking the second course and Mr. Peterson happened to be my teacher.

I’m excited for this year. I have a feeling it’s going to be different from the other years.

August 27, 2019 – Telling Mr. Lewin About Tasty

August 27, 2019October 2, 2019 ~ Campjustin ~ Leave a comment

As promised last week (August 20, 2019), I met up with Mr. Lewin and told him everything about Tasty.

He said I’m a real go-getter. I try to grab every opportunity I have. Which is funny because I had to create my own opportunities before I grabbed them.

We talked a lot about Hollywood. How tiring it was to be an actor and the aspects of shooting on set. Looking back at Tasty, I’m not proud of my performance. Then again, I’m an advocate not an actor.

We also talked a lot about the future. What’s in store next after Tasty?

I do have a plan. The thing is, how will I carry it out? More to come. 😉

The one thing I’m certain about is that I want to be an organ donation advocate, not really a healthing eating advocate.