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Saving Lives, Leaving a Legacy

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Donor Network West Regional Director John Lilley with his dad (and recipient of 2 donor hearts), Stewart
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Saving Lives, Leaving a Legacy
The Gift of Organ and Tissue Donation
“You just never know when organ donation is going to affect your family.” ~ John Lilley

Yes, this is an article on a website called “Just the Positive”; so why are we talking about organ/tissue donation, which is presumably something that happens once a person has died? 

Because donation has everything to do with life. 

In fact, every person who registers as a donor has the ability to save or heal eight lives through organ donation and 75 lives through tissue donation. We think those are extraordinarily positive, even heroic numbers. 

As does John Lilley, the Regional Director for Nevada of Donor Network West. Not only is he in his eighteenth year of working in organ donation and transplantation, but he also has intimate, insider knowledge of the process.

“Mine is more of a personal story – my dad is a heart transplant recipient,” he says, recounting the joy he felt at a recent family reunion that took place at his home with his now 84-year-old father. “He is here because a family said ‘yes’ to donation — not only one family, in fact, but two.”  

His father, Stewart, received his first heart in 1988. But after a few years, he had to be relisted for a second donation due to failing health, receiving his second heart in 1995. 

“He has been doing absolutely super ever since,” Lilley says with a smile. “We’re so grateful for his health and so blessed by the people who have allowed him to be here with us today.” 

Donor Network West is an organ procurement and tissue recovery organization, serving more than 13.5 million people and connecting a donor’s gift to those in need in 45 counties in Northern California and Nevada. Lilley says the size of population served by Donor Network West makes it the second largest organ procurement organization in the country.

“You just never know when organ donation is going to affect your family,” Lilley explains. He says his job — as well as that of his team — is to take every opportunity to educate the community about how donation affects us personally, and also about the importance of making your own wishes known to those around you. 

Telling Stories of Donation

Getting those personal stories out is one aspect of the job for Community Development Liaison Candee Candler, who spends time with recipients and their families almost daily, helping them tell their stories. 
 
“These people are just so fundamentally grateful for their health,” she says, adding that nationally, close to 114,000 people are currently awaiting a transplant. “They’re just so excited to get to wake up and do things – things we take for granted every single day. I’ll never forget one recipient who told me about how just shampooing her hair was such a gift — that her arms were so light. She said it sounded so simple, yet she didn’t have the energy to shampoo her hair before she received her transplant.” 
 
Part of Candler’s job is to work directly with donor families who agree to be ambassadors, who then talk about the impactful experiences they’ve had because of donations. 
 
“Many are moved to tell their story,” she describes, adding that she works both with recipients and with the families of donors. “Our ambassadors share what it means to them, or they share how it feels that their loved one left behind such an incredible legacy through their donation.” 
 
Primarily, Donor Network West coordinates organ, eye and tissue donation, recovering and allocating them both for transplantation — for healing and saving lives — and for research. While most people are well aware of the need for organ donation, tissue donation is less well known. Corneas can provide the gift of sight, and skin recovery can have a significant impact on those who’ve undergone breast reconstruction or burn victims, for example.
 
“We’re currently working on something for Breast Reconstruction Awareness Day – BRA Day, which happens in October,” Candler says. “Many women require donor tissue for their reconstructive surgery after mastectomy.”
 

How to Become a Donor

For both organ and tissue donation to occur, the key is communication.           

“We spend so much time talking about the importance of making your wishes known and telling your family how you feel about being a donor,” Lilley says. “People don’t like to talk about death, so it’s not necessarily a fun conversation to have over family dinner. But it’s so important to make your wishes known and to ensure your family is committed to honoring them as well.” 

According to the team at Donor Network West, making your wishes known is as easy as having that not-fun-but-all-important family conversation as well as registering through the DMV or online.

“About 95 percent of our donors sign up through the DMV because it offers such easy, fairly universal access,” Candler says, adding that she also does outreach through driver education classes in school districts. If you have a student in drivers ed and they come home wearing a bright green bracelet, this is the inspiration to start a conversation about donation wishes. “Through the DMV, you’re entered into the state registry.”  

Or you can register on the Donor Network West website, which also gives you the ability to customize exactly what you’d like to donate. 

Locally, more than 70 percent of Washoe County and the surrounding areas are registered donors. Lilley and Candler are inspired by this number, adding that the national average is about 52 percent.  

“Northern Nevadans are just really giving people,” Lilley says. “But it’s important for us to keep reminding people how easy and impactful donation is, considering less than 1 percent of all deaths qualify to be organ donors. That’s why we’re so proactive — it is a very rare, unique and heroic opportunity to donate, and when it occurs, that means up to eight lives can be saved.”  

Creating a Community Campaign

That “Save 8” message was recently the subject of a local campaign. 

“KPS3 did a fabulous job with the creative, we used Nevada-based actors, and the campaign launched in February and just finished in June,” Lilley says. “It was so well received that other regions in California will be using the campaign on their own platforms.”  

The powerful video features eight people representing different stages of life disappearing around an ailing patient in a hospital bed — presumably, the very eight people the dying patient could have saved through his organ donation. 

As a nurse himself, Lilley understands the power of these numbers. He oversees the clinical team — made up of medical partners in hospitals, nurses and social workers — which provides one-on-one care to guide families through end-of-life decisions, as well as care and updates after a death. 

Donor Network West also offers an after-care program that provides updates to families (in a general, HIPAA-compliant way) about where organs go, also ensuring families get all the support they need and deserve.

Overseeing the clinical team also means Lilley stays up to date on all groundbreaking advances happening in the world of donation — like face transplants, hand transplants, penis and uterine transplants, and gains in technology like 3D printing of organs or the transport of organs using drones.

“These newer technologies are allowing us to save even more lives and extend the period of time that organs and tissues are viable for transplant,” Lilley says. 

Honoring Those Who Give

Lilley acknowledges the importance of spreading the word about donation through public displays like the Honor Walk. 

“The Honor Walk shows how dedicated the entire medical community is to honoring human existence and the ultimate gift that’s about to occur,” says Lilley, describing the routine as hospital employees line the corridors surrounding a donor as he or she is wheeled toward the operating room where life-saving recovery of organs and tissues is about to take place. “It is truly a reflection of the entire hospital saying ‘thank you’ — their way of honoring the ultimate gift.” 

He also describes a lesser known moment that occurs just prior to recovery. Before the procedure, the family is encouraged to write a note about their loved one that is shared among the recovery team. “Our recovery team doesn’t know anything about the patient prior to this moment. They read aloud this paragraph from the family, and they all observe a moment of silence after learning something important about the donor. There is never a dry eye in the room.”  

Lilley says these meaningful measures symbolize the important work they do at Donor Network West every day.  

“I honestly can’t imagine a job that is more impactful personally or professionally,” Lilley says. “We couldn’t ask for a better way to help more people in our community.”  

How You Can Help:

  • Become a tissue/organ donor at the DMV or through Donor Network West’s website
  • Donor Network West is a not-for-profit organization with limited financial resources. Make a financial donation.
  • Watch for and share details about the upcoming BRA Day (Breast Reconstruction Awareness) in October and the new “Tree of Life” at Saint Mary’s Hospital in November; the Tree of Life will feature organ and tissue donors from their hospital over the past 10 years, with the names of new heroes added each year. 
  • The Donor Network West team is always looking for opportunities to speak to large groups of people about the importance of donation. Contact Candee Candler with ideas.
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