July 9, 2008 > Organ Donation: Learn about it. Talk about it. Sign up online.
Organ Donation: Learn about it. Talk about it. Sign up online.
Last May, sisters Anabel Stenzel and Isabel Stenzel Byrnes of Redwood City - identical twins in their mid-30s - stepped out of a rail car and filled their lungs with the glorified air atop Colorado's Pikes Peak. For each, taking that breath was a miracle. Anabel marveled that, just six months before, it had been harder to walk down her driveway at home than it was now to breathe at 14,110 feet above sea level.
Both women were born with cystic fibrosis (CF), a lifelong, progressive lung disease that can lead to chronic lung infections, lung damage, and even death. At the time, their parents were told their daughters would most likely not live past age 10. Today, medical treatment for CF has improved, and the average life expectancy is 37 . . . unless you have a lung transplant.
The Stenzel family was fortunate. In 2000, Annabel had a lung transplant after being on the transplant waiting list for 16 months. Last year, she underwent a second successful transplant when her body began rejecting her transplanted lungs. In 2004, after hovering very close to death, Isabel received her lung transplant and has done well ever since.
"For the first time, we are able to enjoy the freedom of good health," says Anabel. "This is what organ transplantation and the generosity of others did for us."
The Stenzels are living proof that organ donation saves lives. Sadly, there is a huge need.
As of May 30, more than 106,000 Americans - enough people to fill AT&T Park in San Francisco twice over - were on the waiting list for the donation of a kidney, liver, pancreas, intestine, heart and/or lung. For African Americans, Latinos and Asian Pacific Islanders, the shortage is even more acute. In California, two-thirds of those waiting for a donated organ are from one of these groups. They are more likely to suffer organ failure due to a higher risk for diseases like hypertension, diabetes and kidney problems.
"Organ donations from minority groups are not meeting the huge need," reports Laurie Stewart, donation services liaison for the California Transplant Donor Network (CTDN). "The good news is, when an organ donation is made between people of the same racial or ethnic minority, chances of a successful transplant are better because they are more similar genetically."
"Some people think organ donation is contrary to certain religious beliefs, but this isn't true," Stewart continues. "All major religions support this life-saving act."
CTDN is an Oakland-based, federally designated non-profit organization that helps to improve and extend people's lives through organ and tissue donation for transplantation. One of the largest networks of its kind in the U.S., CTDN is the link between organ and tissue donors and individuals awaiting transplantation who live in Northern and Central California and Northern Nevada. It serves 11 million people and 160 hospitals, including Washington Hospital in Fremont.
"Washington is very supportive of our mission and this includes getting the word out about the critical need for organ donation," adds Stewart. Since 2006, there have been seven organ donors at Washington Hospital, resulting in 27 organs transplanted and 27 lives saved.
Another common misconception about organ donation is that, if you've placed a pink sticker dot on your driver's license, you have indicated your wish to be an organ donor and that wish will be fulfilled if you should die. This is not the case.
In California, to make your wish to donate official, you must go online to www.donateLIFEcalifornia.org, a confidential Web site where you can sign up to be an organ and tissue donor. The site also gives you an opportunity to e-mail your family and friends so you can share your decision. If you aren't able to go online, you can obtain a paper sign-up form by writing to CTDN, 1000 Broadway, Ste. 600, Oakland, CA 94607. Or, you can call (888) 570-9400 or (510) 444-8500.
As an alternative, you can also sign up to be an organ donor when you renew your driver's license with the California Department of Motor Vehicles (DMV). However, renewal time for you may be years away, so Stewart recommends signing up online or via U.S. mail.
"Families should talk about the issue of organ donation before a medical crisis occurs," explains Stewart. "End-of-life decisions are very hard topics to talk about and they are best addressed before a tragic situation happens and a quick decision must be made."
Anabel and Isabel Stenzel know firsthand how organ donation can change lives.
"People need to think about themselves and what they would want if they were in need of an organ," recommends Anabel. "The donation process is a way of leaving a legacy, a way of adding meaning to a tragic loss of life."
To learn more about organ donation, go to www.donateLIFEcalifornia.org. You can also learn more about Organ Donation on InHealth, A Washington Hospital Channel on Comcast Channel 78. "Voices InHealth: California Transplant Donor Network" takes an inside look at how the organ and tissue donation process works and offers viewers the opportunity to learn more information about the different services that the Donor Network provides.
To learn more about Anabel and Isabel Stenzel Byrnes and how organ donation helped them survive cystic fibrosis, look for their recently published book, The Power of Two: A Twin Triumph Over Cystic Fibrosis, available online at www.stenzeltwins.com.