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Wendy's Story

Jeffrey Marx, Pulitzer Prize Winning Journalist
Mr. Marx is the author of “It Gets Dark Sometimes,” which is the story about his sister Wendy who had two liver transplants due to chronic hepatitis B. He speaks publicly to raise awareness about the urgent need for organ donation and the problem of hepatitis B.

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Saturday, July 9, 2005

Mr. Marx began by saying, “Let me start with the fact that it’s a privilege to join the HBF Cause for a Cure and to meet all of you today. During my many book tours, I have met a lot of people and I’ve learned that there are ‘Go-givers’ and ‘Go-getters’. What impresses me most about the HBF is that it is full of ‘Go-givers’, people who actively pursue giving back to others in the community, locally and globally.

He then launched into the story of his sister Wendy Marx, who was his best friend and only sister. According to Mr. Marx, Wendy’s story is a story of passion and purpose, of a life lived well. Although each person has their own story that’s just as powerful as Wendy’s, he hopes that his talk serves as encouragement and motivation to everyone at the patient conference.

There are four very important dates in “Wendy’s Story” and the following summary is written in the “first person” to make it easier to appreciate the personal dimension of Mr. Marx’s talk.

June 7, 1967 - In 1967, the hepatitis B virus was discovered; the first successful liver transplant was performed. And in this same year, my sister was born. How do I describe Wendy? Her laughter…it was constant and would always announce her arrival. She was so full of life, vibrant and connected to her family and friends. Kindness, integrity, passion and courage were her trademark characteristics. Courage, as Wendy lived it, is not the absence of fear, but rather, the courage to move on with dignity despite the fear.

Nov. 27, 1989 – Wendy was in a coma in a San Francisco ICU. Our family had been told that she had 24 hours to live unless she received a liver transplant immediately. Her diagnosis was acute fulminant hepatitis B. We think she was infected after her wisdom teeth extractions a few months earlier since she had only been diagnosed for a few weeks. At the time, she was one of 18,000 people in the U.S. waiting for a transplant of some kind and in 1989, 5 or 6 people died due to a shortage of organs. On November 27, we heard the four greatest words – “We have a donor”! Unfortunately, a 9 year old boy was in a fatal traffic accident, and instead of opening gifts the next day on his 10th birthday, he gave the greatest gift of all – the gift of life. Wendy’s survival and recovery after the transplant was a miracle. And her commitment to organ donation was indelible. In 1990, we formed the Wendy Marx Foundation for organ donation awareness in partnership with Carl Lewis, the most decorated Olympic athlete the U.S. has ever had. Wendy created a message of hope for others and demonstrated living, breathing smiling proof that organ donation really works. The Wendy Marx Foundation produced a video about organ donor awareness for teens, launched the “Transplant Games” with Carl Lewis, and worked with Dr. Ruth on a campaign to reach teens at risk.

The primary things that Wendy and I shared during this time was the 10/90 Rule – that is, life is 10% what happens to you ,and 90% how you react to it. In other words, Wendy was thrown a curve ball, but she showed that you can live a full and vibrant life with chronic hepatitis B and post-liver transplant!

Oct. 28, 2003 – Although great progress had been made since 1989 in HBV treatments, Wendy needed to “keep treading water until the right life jacket was thrown to her.” She enrolled in many clinical drug trials in the hope of getting rid of her chronic hepatitis B infection that was destroying her new liver. Wendy passed away on Oct. 28, at the young age of 36 years. But we don’t measure her life in years, but rather, by how much she lived in the years she was given. Her life can be measured by the relationships she built, and the causes she fought for.

July 9, 2005 - More than 89,000 people are waiting for a transplant in the U.S. and today, 19 people die each day because of the shortage of organs (in 1989, there were 18,000 people on the transplant list and 5-6 deaths per day). These numbers are unacceptable and unnecessary. We need to talk to others about organ donation to solve this problem.
Mr. Marx concluded with an impassioned plea for people To Learn, To Think, and most importantly, To Talk. People need to be encouraged to take a negative experience and turn it into something positive for others, not only for themselves. Wendy did this. No one volunteers or signs up to become involved with the hepatitis B journey.

Concluding Remarks
He reminded the audience that no one chooses to be chronically infected with hepatitis B. But the power to choose is still yours. What are you going to do from here forward? Try to remember and live by the 10/90 Rule – 10% is what life gives you, 90% is how you respond. The challenges are great, but if everyone works together, the obstacles can overcome them. Everyone needs to work within the current hepatitis B community; expand the numbers of people involved; and help others in your own community to learn, think and talk.

Ultimately, it’s not “Can I make a difference” -- it’s “Will I make a difference”. That’s the choice everyone has. And this is what drove Wendy. She became a symbol for the fight for organ donors and the fight against hepatitis B. Her favorite quote was, “I thank you from the bottom of my heart – and my liver – for allowing me this time with you.”

Q&A Session with Mr. Marx
* Stigma - Although it wasn’t part of Wendy’s experience, it’s an issue that affects many of those with chronic HBV. Need to increase education and awareness so the public doesn’t react with anxiety or hostility towards “hepatitis”. Also, need to encourage people to avoid seeing themselves as a victim of the disease. Remember the 10/90 Rule.
*Education - There are four major levels of education needed: public, news media, medical profession, and one’s self. Always need to start with yourself, and then reach out to others.

For more information about Jeffrey Marx and his book “It Gets Dark Sometimes”, and the Wendy Marx Foundation, visit www.transplantbook.com.

acrobat documentDownload all of the notes from the B Informed Conference 2005 in a printable PDF Format.

 

HBF Disclaimer:
Please know that these conference notes are NOT official transcripts of the meeting! They are an informal summary that has been compiled from the notes of several people who attended, but are not experts in the field.

This summary is being made available as a courtesy only; therefore, please be sure to speak with your health care provider (or attorney if filing a disability claim) if you have any questions about the information in these notes.

 


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