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TRIO Youth Circle

YOUTH - Youthful Organs United To Help


Welcome to the TRIO Youth Circle – A never ending support system for you and your family

MISSION

TRIO Youth Circle is committed to empowering people, especially younger people, to never lose hope, and improving the quality of lives touched by the miracle of transplantation through support, advocacy, education, and awareness across the youth community.

VISION

As a part of TRIO's international organization, to be recognized and respected on a national level as the leading voice of youth affected by transplantation.

MARKET

Provide support to young transplant candidates, recipients, donors, and their families.


RESOURCES

Q & A for and by Young People

You may have many questions about the transplant experience, here we answer those from the vantage point of youth . . .
(e-mail your question for consideration to: This email address is being protected from spambots. You need JavaScript enabled to view it. and put "Youth Q&A" in the subject line)


Sandra, a 15 year old two years post kidney transplant asks:
"I'm feeling fine, except for these pills and their side effects. They are such a pain. I want to be 'normal' like the other kids again. Can I stop taking them now that I'm out so far from that transplant surgery and doing well?"

Valen answers:
Absolutely not. I can’t stress enough how very important it is to take our medicine every day and to take it on time. This is a vital part to keeping us healthy and having our transplant last as long as possible. If you are having problems with side effects, I would suggest talking to your doctor about them if they are unbearable.


Joe, a double lung recipient out 3 years, asks:
"How can I get in touch with the family of my donor? I feel such a sense of gratitude and want them to know how much I appreciate this gift of life."

Jim answers:
This is a common feeling and given the anonymous process of organ donation, it may seem hard to communicate and you may never hear back, but your local OPO (organ procurement organization) will provide guidance and support in conveying a letter (without any specific identifying information in it) to your donor family. Assume they received your letter and don't expect anything in return. If they do want to respond, they too will do it through the OPO and in some cases, eventually there may be a meeting face to face arranged through the OPO. Just don't expect it. It certainly is a good thing to write that letter of thanks and many donor families would love to have received one from the recipients of their loved ones gifts.


Joanne, an 18 year old recipient out 1 year asks:
"I had a kidney transplant and have been getting lots of urinary tract infections (UTI’s) Have you experienced this, and how have you dealt with it?"

Valen ansers:
Yes, following my transplant, I had a lot of UTI’s. My doctor suggested I try cranberry supplements. I now take cranberry supplements every day and have not had one since then and it has been almost 3 years now since I had a UTI. (knock on wood)


John, a 15 year old heart recipient out 4 years asks:
"I am on steroids and am having trouble with the weight gain. Do you have any suggestions?"

Valen answers:
I put on 35 pounds after my transplant due to being on a high dose of prednisone. I really started to watch my portion sizes, measured everything that I ate, and exercised, and I was able to lose the 35 pounds, get back down to my normal weight and have kept it off for 5 years now.


Other areas of question and concern for future discussion:

  • Problems with body image...?
  • Are you having trouble in dating or having a relationship because of your transplant/condition?
  • Are you finding it hard to connect with others your age?

And now, do you have a question?


Our goals for the TRIO Youth Circle are:

  • Form a virtual TRIO Youth Chapter
  • Write a youth column for the TRIO LifeLines Newsletter
  • Create a TRIO Youth Facebook page
  • Promote particpation in TRIO scholarships for youth
  • Develop support services for transplant youth of all ages

We have the following volunteer roles available:

  • TRIO Youth Chapter Coordinator
  • TRIO Youth Chapter Co-Coordinator

TRIO Youth Chapter Members to partake in over the phone meetings/support groups

Submit ideas that you would like to read in the youth column for TRIO LifeLines Newsletter

Our hope for TRIO's Youth Circle is to form a fun and compassionate group of young people that can share their stories, ideas, and have an organization to turn to and know that they are not alone. If you have any questions and or you are interested in joining this exciting new group, please contact TRIO Youth Circle at This email address is being protected from spambots. You need JavaScript enabled to view it.

A note from our past Youth Circle Coordinator, Mary Wu:

As a two-time kidney transplant recipient who had my first transplant at age 6 and my second transplant at age 12, both my family and I are all too familiar with the health challenges that a child and then teenager must face and overcome and, yet, there is so much more to us as individuals rather than only an illness. It has been 16 years (and counting!!) since my second kidney transplant and I am very actively involved in educating the public on the power of organ and tissue donation through public speaking, volunteer work, and my passion and work in writing.

My mission for TRIO Youth Circle is to provide ongoing information, inspiration, and support to young transplant recipients and candidates and their family members/caregivers. It is important that young transplant recipients/candidates and their caregivers to know that they are not alone and that TRIO Youth Circle is an outlet of support. Above all else, TRIO Youth Circle is not above "ME," but it is about "WE." "WE" work together as a team to provide all that ongoing support, resources, and inspiration above and beyond! It is an honor to serve as TRIO Youth Circle Co-Captain and I always welcome and am excited to hear all about you and your views, so please feel free to reach me at This email address is being protected from spambots. You need JavaScript enabled to view it. or 917-968-8856 or check out my book blog "Confessions or a Kidney Transplant Recipient" at http://kidneyconfessions.blogspot.com. Let us rock and roll in making the TRIO Youth Circle the best out there from the best in all of us together as a team!!

Thank you so much for visiting our TRIO youth page!

As we create a new leadership structure, to be known as the TRIO Youth Circle Council, see some current and past leaders and their stories below:

Emmalyn Brown

Emmalyn Brown

Age: 16 (in 2014)
My organ donation story began in March 2007 when I was just a 9-year-old. The day my story began, I felt fine and although I had been born prematurely as a twin, I had experienced no long-term problems. I was completely healthy. Then my skin dramatically turned yellow during gym class. After several visits to the doctor and hospital over the next week, I was diagnosed with a probable case...

Regina McGuire

Regina McGuire

My name is Regina McGuire and I am seventeen years old. At age six, I was diagnosed with severe Aplastic Anemia. This disease causes a persons bone marrow to stop producing the blood cells necessary for survival. From age six to seventeen I relied on the generous blood donations of others. This treatment allowed me to live a relatively normal life up until last year when my family, my doctors,...

Terri Lynn

Terri Lynn

Age: 32
 was born and diagnosed at age two with Tyrosinemia, a very rare metabolic disease where the liver doesn't have any enzymes it needs to break down protein.  When my mother noticed I wasn't walking or acting like other babies my age she took me from one doctor to another with none of them knowing what was wrong with me. I even was misdiagnosed with Cystic Fibrosis and eventually sent...

Gabrielle Archangelo

Gabrielle Archangelo

Age: 20
My name is Gabrielle Archangelo I am 20 years old and I am a liver transplant recipient. A few months after I was born in 1990 I was diagnosed with a fatal liver disease known as Biliary Atresia in which the bile ducts of the liver do not function properly ultimately leading to liver failure. As a result, I was put on the transplant waiting list to receive a new liver. After months of...

Mary Wu

Mary Wu

Age: 27
It began with at least a 104 fever and being rushed to the emergency room at age 3.  The diagnosis was chronic kidney failure.  Or, more specifically, agenesis of the kidneys, which meant that my kidneys never fully developed.  I barely remember anything from those years, but I knew from then on that my life had changed forever.  I depended on my parents...

Holly  Werlein

Holly Werlein

Age: 25
I never thought in a million years that I would go through something like this. My story isn't like most peoples who unfortunately had to wait. I am one of the rare few that went through acute fulminate liver failure. I just happened to be in the right place at the right time. I was at the Cleveland Clinic for a totally unrelated appt and my mom noticed my eyes were yellow. I hadn't been...

Valen Elizabeth Keefer

Valen Elizabeth Keefer

Age: 27
A STORY OF HOPE: A LIFE OF TRIUMPH by Valen (Cover) Keefer From birth, Valen Keefer has faced a challenging medical heritage. Everyone on her mother’s side has poly­cystic kidney disease (PKD), a condition in which fluid-filled cysts grow on the kidneys, gradually causing them to lose function. At age 57, Valen’s mom has lived the longest of anyone. Grandmother, aunt,...

Bill Coon

Bill Coon

Age: 21
In 1989, Bill Coon was born with a congenital heart defect. That year, he became the fourth infant heart transplant in the Midwest, and the eighth in the nation. At the age of twenty, his transplanted heart began to fail. Due to a lifetime of taking medication, his kidneys failed as well.After he was diagnosed with end-stage heart and kidney failure, Bill unknowingly began writing his first...

Julie Bonn

Julie Bonn

Age: 23
Julie had a liver transplant in October of 2000 at the ripe age of 12 after a diagnosis of Acute Liver Failure.  she was a perfectly healthy child until the very beginning of 7th grade.  Julie started to get sick in early September with the symptoms of vomiting and being a little tired.  Julie writes: At first my pediatrician thought I had the flu but after a week of not...

Josh Morrison

Josh Morrison

Age: 28
My decision to donate my kidney to a stranger came bit by bit and not all at once. When I was in college, I readabout the experiences of a woman who needed a kidney transplant, and the concept intrigued me. I was interested to find out that, besides saving another person’s life, kidney donation is a laparoscopic surgery that involves a hospital stay of only two to three days –...

Muran Veniszee

Muran Veniszee

Age: 31
(Check out this article about Muran's upcoming trip to the World Transplant Games in So Africa)Murans' journey through his heart world began very early.  At just three months he was diagnosed with tetralogy of fallot,a congenital heart defect which is classically understood to involve four anatomical abnormalities of the heart (although only three of them are always...

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