Transplant Camp Interviews

These are interviews from a camp I attended over the summer. Transplant camp is a gathering of kids and teenagers who have received a transplant. I asked for their stories, and here are their answers.

(AJ) Alejandro Avila

General Questions

How old are you?

16

Where are you from?

Sacramento

Transplant

He was 6 months old when he recieved the transplant.

What was your transplant?

Liver

What was your condition that led to the transplant?

Biliari Atresia

What was life like before transplant?

My skin was really pale and greenish and my eyes were yellow.

How long did you wait for your transplant?

From what I know, there was this grey area… If I could guess, I’d say a week or two.

How was the road to recovery?

Road to recovery was hard for my mom, because she didn’t know what I was like… She had to make a really gross dish, and I had to eat it and it was hard for her.

What can you do now after transplant?

Idk, I can’t eat red meat now.

What are you most excited about after being healthy?

I don’t know what normal is.

Donor

Do you know your donor?

Yes, I know his name was Chris.

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

Male. 19.

How did they die?

He passed in a truck incident.

Who decided to be an organ donor? Their family or the donor themselves?

Chris decided.

Did you meet their family?

I met one of them.

What was that like?

She was nice.

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

You’re helping people not die.

Alejandro is not scared about the future and is pretty happy with his life.

Miranda Lee Miracle Weise

General Questions

How old are you?

16

Where are you from?

Livermore

Transplant

Miranda received her transplant on October 23, 2019.

What was your transplant?

Heart & Liver

What was your condition that led to the transplant?

Heart was failing

What was life like before transplant?

I got tired a lot. I wasn’t hyper. I couldn’t do sports (high impact sports). I also got tired really easily.

How long did you wait for your transplant?

2 Months

How was the road to recovery?

Very long and hard, but my mom helped me.

What can you do now after transplant?

I think I can do more sports. Not all of them but most of them.

What are you most excited about after being healthy?

So I have a plan when I’m older. I’d have a rusty farm, and I would have people who didn’t have a place to live live there.

Donor

Do you know your donor?

No.

Do you want to meet them?

Yes. They’re family.

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

Definitely do it because it saves people’s lives. Even if you’re alive, donating a liver, kidney can save people’s lives. Even if it’s really painful, you’re saving a life.

Bode Everist

General Questions

How old are you?

16

Where are you from?

North Tahoe, California

Transplant

What was your transplant?

Liver, received May 26, 2015

What was your condition that led to the transplant?

biliary atresia

What was life like before transplant?

It was rough. It was not the best. It wasn’t normal. It was hospital stay after hospital stay.

How long did you wait for your transplant?

12 years

How was the road to recovery?

Recovery was about 2 months, it felt really long because I couldn’t do any normal things

What can you do now after transplant?

Play football. And also just spending enough time with friends outside of the hospital. Just being outside with the lake is very beautiful.

What are you most excited about after being healthy?

Play football. Play sports. Go to state championships. Get those ranks.

Donor

Do you know your donor?

Yes, I do.

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

Female, currently 36

Why did she decide to donate?

She was just a really kind-hearted person who had empathy towards me.

Did you meet her?

Yeah, I see her all the time and we became best friends, we became family.

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

Go for it.

Bode has a tattoo of his transplant date. On his transplant date, he spends time with his donor and family.

Danica Marlo Rose

General Questions

How old are you?

15

Where are you from?

California

Transplant

What was your transplant?

Kidney, recieved March 24, 2014

What was your condition that led to the transplant?

Doctors don’t know how she got it.

What was life like before transplant?

It was tough for me because I didn’t really eat enough and my mom was worried about me since I was getting really skinny. I would get really nauseous.

Danica threw up in class and her classmates laughed at her. One girl stood up for her; Danica told that girl people were jealous of Danica for not doing P.E.

How long did you wait for your transplant?

1 year and 3½ months

How was the road to recovery?

I remember being really tired and really hungry. My grandpa came in and asked if he could buy me anything and I said Taco Bell.

Overall, she said it was easy.

What can you do now after transplant?

Well I mean there are certain things I couldn’t do but now can do

  • swimming
  • dancing
  • hula-hooping

I felt like it [transplant] changed my life because I’m really mature for my age as teachers have told me.

What are you most excited about after being healthy?

I know that there is a lot of stuff but I know that my medications might not work and that scares me.

She looks on the bright side and likes being more active.

Donor

Do you know your donor?

Yes, it was her uncle

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

Male. Mid 20s (24)

Why did he decide to donate?

He had to give me his kidney so I could have another chance at life.

Brooklyn Myers

General Questions

How old are you?

15

Where are you from?

San Jose, CA

Transplant

What was your transplant?

Liver, received at 7 months old

What was your condition that led to the transplant?

biliary atresia

What was life like before transplant?

Idk, I was adopted

How long did you wait for your transplant?

4 months

How was the road to recovery?

Difficult, I guess. I know I had the transplant after I was adopted. I had a lot of blood clots so I was in and out of the hospital until the summer of 3rd grade.

What can you do now after transplant?

I don’t know. Live?

What are you most excited about after being healthy?

Doing what I want. Sports. Stuff.

Donor

Do you know your donor?

No. I wish I did.

Why do you want to meet your donor?

Um, well, I want to meet their family. What they’re like, to thank their son/daughter for it must’ve been hard.

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

Um… I say do it. When you die, your organs start disintegrating and might as well put it to use.

What do you do to celebrate on your transplant date?

I don’t do anything. I wish I did.

Mikayla Bruce

General Questions

How old are you?

16

Where are you from?

California

Transplant

What was your transplant?

liver & small bowel, received April 2008

What was life like before transplant?

I got sick a lot and had to stay in the hospital.

How was the road to recovery?

I think I had to stay in the hospital for a couple of months.

What can you do now after transplant?

A lot of stuff, I guess. I mean I don’t get sick as often.

What are you most excited about after being healthy?

That I don’t get sick a lot and have to stay in the hospital.

Donor

Do you know your donor?

No.

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

They were a child. N/A gender

How do you celebrate your transplant date?

I don’t really celebrate it. My dad tells everyone though.

Would you like to meet your donor family?

Yeah, the family, sure.

Have you tried reaching out?

No, I don’t think so.

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

You made a good choice. Hope all goes well.

Anya Ahuja

General Questions

How old are you?

17

Where are you from?

Bay Area CA

Transplant

What was your transplant?

Kidney, received April 10, 2013

What was your condition that led to the transplant?

autoimmune disease microscopic polyangiitis

How long did you wait for your transplant?

1 year

What was life like waiting for the transplant?

I couldn’t go to school for 6 weeks (I was 11 at the time). I had to hire a tutor for homeschool.

How was the road to recovery?

I could eat more food – I couldn’t eat sodium, phosphorus, potassium – and I could swim and be more active.

Was there any complications from the surgery?

Nope 🙂

What are you most excited about after being healthy?

Having more freedom with my life.

Donor

Do you know your donor?

My dad was the donor.

My dad was a living donor – he is a healthy adult.

Why did your dad decide to donate?

Both my mom and dad were tested to be my donor, but my dad was the match.

What does your future look like?

For now, college. But hopefully a healthy life, and a happy one.

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

Do it. Especially as a living donor, because most people on the transplant list are waiting for kidneys.

Turner Hill

General Questions

How old are you?

17

Where are you from?

Charleston, South Carolina

Transplant

What was your transplant?

kidney, received May 15, 2005 (age 2)

What was your condition that led to the transplant?

Congenital Nephrotic Syndrome

What was life like before transplant?

Don’t really remember, but I was gaining weight and my parents thought it was healthy, but it turned out it was water weight. So I was pretty normal.

How long did you wait for your transplant?

about a few months

How was the road to recovery?

We stayed in California for a summer and we spent 2 months checking up to make sure I was okay.

What can you do now after transplant?

Well, I couldn’t do anything when I was a child.

I have no limitations to anything. The doctors lifted a ban on contact sports.

What are you most excited about after being healthy?

Being here in general. I don’t know because I haven’t had a hospital visit since 3rd grade.

Donor

Do you know your donor?

Yes, it was his father.

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

He is healthy and middle age.

How did he know he was eligible to be a donor?

They do a bunch of testing – they go from the oldest to youngest – and he was the second one tested.

Were there any complications?

No.

Why did he donate?

I think it’s because it’s his son and families are supposed to match.

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

I think they should do research before deciding not to be an organ donor.

How do you celebrate your transplant date?

I don’t. It’s just a regular day.

Turner is a non-steroid patient. In 2004-2006 Stanford was doing a study on steroids to see if transplant recipients could not take steroids. He takes reliable immunosuppressants.

Why are you an active advocate for organ donation?

Turner has been to Washington, D.C. two times for transplant activism. The first time he raised money for hospitals. The second time was a communication between doctors, patients, and donors.

Because I’m very close with the hospital I’m at. If they ask me to do anything I’ll do it.

I’m doing a meetup of other transplant recipients in our cities.

What does your future look like?

I hope to stay an advocate for the transplant community but still move forward with my goals in life.

Jessie Allan

General Questions

How old are you?

17

Where are you from?

Cupertino, CA

Transplant

What was your transplant?

liver, received on July 20, 2003

What was your condition that led to the transplant?

biliary atresia

What was life like before transplant?

I don’t remember. I was 3.

What can you do now after transplant?

Everything is pretty normal.

What are you most excited about after being healthy?

I’m just excited that I am healthy.

Donor

Do you know your donor?

Yes, dad. He is healthy and middle aged.

Why did your dad decide to donate?

I think it was just something that he just did.

How did transplant affect your life?

I mean, I’m lucky that it doesn’t too much. But it’s something that’s there or it’s something that’s a unique thing.

Why did you decide to acknowledge your transplant instead of moving on?

I think it’s kinda cool and it is a part of me to be aware of. It is a part of me.

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

I mean, obviously it’s a difficult decision. I, personally, think it’s a good decision as it has impacted my life.

Sienna Torrez

General Questions

How old are you?

15

Where are you from?

Las Cruces, NM

Transplant

What was your transplant?

Liver, received August 2004, 9 months old

What was your condition that led to the transplant?

biliary atresia (she did a report of the condition at school)

What was life like before transplant?

I was a baby. I don’t know. But I know since the day I was born I was always sick.

How long did you wait for your transplant?

not long

How was the road to recovery?

I think it was kinda rough. I had pmneumia a lot of times.

What are you most excited about after being healthy?

To live like a normal person.

Donor

Do you know your donor?

Yes.

Sienna’s family found them on a newspaper. At 13, Sienna dug around hard to contact to family.

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

Male. 9.

How did they die?

Drank the wrong milk (dairy allergy).

Who decided to be an organ donor? Their family or the donor themselves?

The family had to decide. It was a really hard decision for them.

Did you meet their family?

I never met them. I never knew them.

When she was 13, Sienna got curious and just wanted to see a picture of her donor. When she found his picture in a newspaper, she freaked out.

Sienna had to do a report of a medical condition for school, so she picked biliary atresia. Through her research, she found she could take a pill once a day, and now she is.

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

Do it. You don’t need your organs when you’re dead.

Tatum Warren

General Questions

How old are you?

12

Transplant

What was your transplant?

Liver

What was your condition that led to the transplant?

biliary atresia

What was life like before transplant?

I don’t remember it, but my mom told me a little bit of it. I was definitely in a bit of pain.

How was the road to recovery?

It was definitely painful because I couldn’t eat for a couple of days but it wasn’t the worst.

What can you do now after transplant?

Um… I probably… I’m normally healthy all the time now. I can do everything now. I learned to swim and all that.

She couldn’t eat gluten.

What are you most excited about after being healthy?

I really don’t go the hospital anymore. I don’t like the hospital.

Donor

Do you know your donor?

No.

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

Male. 17.

Did you meet their family?

My mom met his parents but I didn’t actually meet them.

Tatum does not know how it went and is not in contact.

Tatum’s dad was also willing to donate half of his liver.

Grace Garcia

General Questions

How old are you?

15

Where are you from?

Albuquerque, NM

Transplant

What was your transplant?

Liver, received Nov 2004, about 8 or 9 months old

What was your condition that led to the transplant?

Biliary Atresia

What was life like before transplant?

Honestly… I don’t know because I was a kid…but I felt really good.

How long did you wait for your transplant?

Idk, longer than Sienna but not long.

(Sienna and Grace were at the same hospital during their transplants)

How was the road to recovery?

Idk. Grace kept getting sick and switched from Prograf to Sirolimus.

What can you do now after transplant?

I can live properly.

What are you most excited about after being healthy?

Living a normal life and not being sick.

Donor

Do you know your donor?

All I know id I think he was 13 and died in a car crash.

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

M. 13.

Who decided to be an organ donor? Their family or the donor themselves?

The family.

Did you meet their family?

No.


Grace and Sienna’s parents met each other in the hospital. They spent a lot of time as children sick together.

How was that like?

It made me feel like everyone was like me.

It was nice. I didn’t feel alone.

Did it help you?

It helped our families more than it helped her, for sure.

I think I wasn’t aware it wasn’t normal.

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

Totally do it.

Ashley Andrade

General Questions

How old are you?

15

Where are you from?

San Jose, CA

Transplant

What was your transplant?

Kidney, received July 24, 2018, age 13

What was your condition that led to the transplant?

Low Hemoglobin

What was life like before transplant?

Normal

How long did you wait for your transplant?

1 year

How was the road to recovery?

It was not that hard, but it wasn’t super duper easy.

What can you do now after transplant?

A lot more than I could before. I have a lot more freedom.

What are you most excited about after being healthy?

Being able to experience my teenage years to the fullest.

Donor

Do you know your donor?

No.

Would you like to?

Yeah, I would love to meet my donor family. I would thank them and make them feel that the kidney is in good hands.

What did you do to celebrate today? (today is the one year anniversary of her transplant)

My parents took me to a really nice restaurant and we told them it was my birthday.

How do you feel?

I feel very grateful and encouraged to do things out of my comfort zone.

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

You’re saving a life without losing yours.

Gabriel Chow

General Questions

How old are you?

16

Where are you from?

Menlo Park, CA

Transplant

What was your transplant?

Liver, received June 5, 2012, 9 years old

What was your condition that led to the transplant?

A.G.S.L. – Alagille Syndrome, which is a genetic disease of a mutated gene that makes it hard to process bile. It affects all organs but the liver was the worst.

What was life like before transplant?

I didn’t feel as well as I do now but I had to take a lot of medications. Towards the point I had my transplant I missed a bunch of school.

How long did you wait for your transplant?

¾ year

How was the road to recovery?

It was a long road to recovery. I think I had a pretty normal road to recovery for a liver transplant. There wasn’t anything abnormal about it.

What can you do now after transplant?

When I was younger – before my liver problem became worse – I could do normal stuff. As it got worse and worse, I had less energy and basic stuff became harder to do. I was supposed to have a transplant when I was one or two, but nobody knew why my liver stayed healthy for so long. So I got my transplant at nine instead. To put my liver in perspective, a normal liver is supposed to look pink but mine looked green.

What are you most excited about after being healthy?

I get to live longer than I would’ve. Knowing my life has been extended – sort of artificially – makes you value it more I think.

Donor

Do you know your donor?

No.

Would you like to meet your donor?

My donor is deceased.

Would you like to meet your donor family?

I’m not sure. It would be interesting at least to meet them.

I’d like to thank them… well… I’m not sure.

I don’t really want to meet them because I’m afraid they’ll be disappointed with the life I’m living now.

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

They’d be helping someone. Helping to give life to someone else. As for live donors, I know it’s a difficult recovery program for live donors. For live donors, yeah, make sure you can handle it.

Attison Dietz

General Questions

How old are you?

16

Where are you from?

San Jose, CA

Transplant

What was your transplant?

kidney, recieved September 28, 2011

To make it more special, Attison’s mom named the kidney Charlie, after a character from the TV show.

What was your condition that led to the transplant?

kidneys stopped growing when she was young

What was life like before transplant?

Pretty normal, I guess

How long did you wait for your transplant?

not very long, short

How was the road to recovery?

Um, it was a little rough at first learning how to take medicine and stuff, but it was pretty easy when I went back home.

What can you do now after transplant?

Almost everything normal people can do.

What are you most excited about after being healthy?

Being able to do anything I want and not having to take medicine every day.

Donor

Do you know your donor?

Yes, it was her mom.

How is your mom now?

She is healthy as ever.

Why did you find taking medicine difficult?

It’s just really hard to remember to take it all the time and it gets in the way with what I want to do.

Do you take medicine every day?

Yes. It’s gotten easier, yes.

Why did your mom decide to donate?

Well, because they told us she could work and she didn’t want me to wait for another transplant.

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

They should definitely do it because it’s very helpful to people like us (gestures to camp).

Khalieghya Dandie-Evans

General Questions

How old are you?

17

Where are you from?

Bay Area

Transplant

What was your transplant?

liver, received July 2002

What was your condition that led to the transplant?

jaundice, biliary atresia

What was life like before transplant?

I had transplant at the age of 4 months so I don’t really have a backstory.

Donor

Do you know your donor?

All Khalieghya knows is her donor is a 4-year-old who drowned in a family pool and lived in Fresno.

How do you know that information about your donor?

The doctors told my mom, and my mom told me. My mom didn’t know that a transplant can come from mixed races, so when she found out it was from a white boy who drowned and his family decided to donate she asked a lot of questions.

Did you search for your donor?

I searched for my donor. I still do. At this point it’s been a 17 year search and if I do find them and talk to them it’s been a 17 year break of their son dying ang it would bring back memories.

What is your hospital picture?

The hospital took a picture of Khalieghya when she was 3, 4. Donate Life promoted donation by putting her picture in DMVs and hospitals.

What were the commercials you were in?

The commercials were about donation and telling our stories. Khalieghya stood there and her mom talked.

Do people recognize you?

Yes, actually. They’ll either be like ‘You look like a little girl I saw in the hospital’ or my mom would take a picture of me next to the poster and say ‘Oh, is that you?’

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

They should definitely do it because they save innocent little children.

Michael Brice

General Questions

How old are you?

16

Where are you from?

Oakland, CA

Transplant

What was your transplant?

heart and liver, received August 2, 2010

What was your condition that led to the transplant?

double outlet right ventricle

What was life like before transplant?

I tried to stay normal but it didn’t really work out. I tried to keep up with other kids but it didn’t work out.

How long did you wait for your transplant?

7 years (he was on the list since birth)

How was the road to recovery?

That took at least half of the year. I went in August and I couldn’t go home-home until Christmas.

What can you do now after transplant?

Everything except for contact sports.

What are you most excited about after being healthy?

Doing whatever you want – except for taking medicine. Other than that, life is great.

Donor

Do you know your donor?

No.

Would you want to?

Yeah, totally.

Why?

Cause I want to meet the family that gave me a second chance at life.

What do you do now?

I’m a rapper and music producer.

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

A lot of people really need this. It’s your choice. We’re not forcing you, we’re encouraging it.

Brandy Carew

General Questions

How old are you?

16

Where are you from?

Fresno, CA

Transplant

What was your transplant?

kidney, received Nov 22, 2010

What was your condition that led to the transplant?

kidney failure, biliary atresia

What was life like before transplant?

My life was good. But on most days I was slowing down and trying to keep up with other kids but that sickness eventually go to me.

How long did you wait for your transplant?

at least a week

How was the road to recovery?

It was hard but it got a little bit easier every day. I went to the Ronald McDonald House but I had to go back to the hospital and my mom was freaking out. She almost passed out.

What can you do now after transplant?

Go out, have fun, be with my friends.

What are you most excited about after being healthy?

Just being free and not being sick.

Donor

Do you know your donor?

No.

Would you like to meet your donor family?

Yes, I want to see how they’re coping and how they’re doing. He’s living, but through me.

What do you know about your donor?

He was male and 10-years-old. He was in a car crash and was on life support.

How is it having a boyfriend who also has a transplant?

It’s special that you share the same thing and know what each person is going through.

Do you support each other?

Yes.

Yes, very much so.

In what way?

Emotionally, physically, mentally.

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

Do it because not a lot of people have the chance to do it.

Camila Gonzalez

Camila had three transplants. She underwent a heart transplant on September 14, 2004. Then she underwent a heart transplant on February 10, 2019, immediately followed by a kidney transplant on February 11, 2019.

General Questions

How old are you?

16

Where are you from?

South Lake Tahoe; Hayward

1st Transplant – Heart

What was your transplant?

Heart, received September 14, 2004

What was your condition that led to the transplant?

Cardiomyopathy

Why did you have two hearts?

My lungs weren’t working on their own and my heart wasn’t functioning.

Where did the two hearts come from?

One was my native heart and the other was the donor heart

How did that work?

My native heart and my donor heart were connected. My native heart pumped blood to the whole body and my donor heart pumped blood to my lungs.

How was the road to recovery?

I have no idea. I was 22 months when I got that.

Why did it not work out?

My donor heart stopped working and my artery started closing. I got coronary artery disease and it led to my second transplant.

When were you placed on the list?

14

How did your heart hold up that long?

Medicine.

My first heart transplant lasted 14 years.

Did you feel tired with your failing heart?

Tiring, because I couldn’t do much and the doctors put me on Milrinone and I felt better but I felt trapped.

Camilla led a normal life until 14, when everything dropped.

2nd Transplant – Heart & Kidney

What was your transplant?

Heart & Kidney

What was your condition that led to the transplant?

For the heart, it was coronary artery disease. They replaced her kidney because they didn’t want her kidneys to fail later after transplant.

How long did you wait for your transplant?

2 years

What was it like when they told you a heart was available?

I was so emotional I cried. Finally, my life can get back to normal.

How was the road to recovery?

It was hard cause I couldn’t walk. I couldn’t walk, eat, and I had to go to rehab to relearn everything. I had a tracheostomy and I couldn’t eat for 3 months. I had it until March and June 18 they took it out.

How does it feel now?

It’s back to normal. All I needed was my transplant and to get that PICC line out of me.

How do you predict it’ll be in a year?

Still good.

Camila said same or better, but she’s leaning towards better.

What are you most excited about after being healthy?

Travel. Because I couldn’t travel before.

Donor

1st Transplant – Heart

Do you know your donor?

No.

What do you know about your donor?

They were from San Francisco.

Would you like to meet your donor family?

Yes. To thank them that they were willing to give up their loved one and donate their organs to save someone else.

2nd Transplant – Heart & Kidney

Do you know your donor?

No.

Would you like to meet your donor family?

Yes. For the same reason.

How do you try to live your life now?

As normal as possible.

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

You should consider it because it could save many people’s lives and even children. You could get closure knowing your loved one lives through someone else.

Galen Dahl

General Questions

How old are you?

16

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

General Questions

How old are you?

14

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

General Questions

How old are you?

13

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.

Adham Abdo

General Questions

How old are you?

16

Where are you from?

Milpitas, CA

Transplant

What was your transplant?

kidney

What was your condition that led to the transplant?

chronic kidney disease, genetic disorder

Joey Harbour

General Questions

How old are you?

15

Where are you from?

Pensacola, Florida

Transplant

What was your transplant?

kidney, received on June 24, 2004, at 22 months old

What was your condition that led to the transplant?

posterior urethral valve

How long did you wait for your transplant?

year and a half

How was the road to recovery?

For my family, stressful. Stressful but relieving.

What can you do now after transplant?

Living is one. It was a bonding moment for my family.

What are you most excited about after being healthy?

Being able to inspire others.

Donor

Do you know your donor?

Yes, it was his mom.

How is your mom doing?

Good. She’s living a normal life – somewhat.

Were there any complications?

They had to put it in the front because the adult kidney was too big for my tiny baby kidney.

Was your mom scared to donate?

She was scared to go into surgery but she was willing to donate.

Why did your mom donate?

She was the only match in my family and that was the easiest option.

How do you celebrate your transplant date?

Just like a birthday. With presents and stuff.

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

Do it. You’re gonna save a life.

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