Save Lives as a Living Organ Donor: Tracey F. Johns

Easton Map and History

The County Seat of Talbot County. Established around early religious settlements and a court of law, Historic Downtown Easton is today a centerpiece of fine specialty shops, business and cultural activities, unique restaurants, and architectural fascination. Treelined streets are graced with various period structures and remarkable homes, carefully preserved or restored. Because of its historical significance, historic Easton has earned © John Norton distinction as the “Colonial Capitol of the Eastern Shore” and was honored as number eight in the book “The 100 Best Small Towns in America.” With a population of over 16,500, Easton offers the best of many worlds including access to large metropolitan areas like Baltimore, Annapolis, Washington, and Wilmington. For a walking tour and more history visit https:// tidewatertimes.com/travel-tourism/easton-maryland/.

Save Lives as a Living Organ Donor

by Tracey F. Johns

This is not Jason Lee’s first rodeo when it comes to seeking a live donor to help save his life. And right now, the clock is ticking to encourage more people to register as living organ donors.

Lee’s first gift of a medical transplant came when he was just seven years old. He was diagnosed at the age of five and beat the odds, facing a survival rate of less than 1 percent from AML leukemia, through a transplant of bone marrow donated by someone who was then a stranger. Now Lee, his family and that donor, Lori Groen of South Milwaukee, Wis., are lifelong friends and consider each other’s families their own.

“Lori originally donated her bone marrow anonymously, with an option to be reached if the transplant patient agreed,” said Lee. “I think it was her way of paying life forward or giving back life in a world where she had no children of her own.”

Lee ~ now aged 42 ~ remains cancer free and is the longest-living unrelated bone marrow transplant recipient with a still-living donor. The consequences of the strong chemotherapy he received in preparation for the transplant 33 years ago, however, continue to wreak havoc on his continued health.

The chemotherapy that helped save Lee from AML leukemia also wiped out his growth hormones

Jason Lee with his bone marrow donor, Lori Groen.

Living Organ Donor family moved from Easton to Wisconsin for his treatments and the and left lingering effects on his following three years mostly spent heart, blood cells and kidneys. in and out of Children’s Wisconsin

Now, Jason Lee needs a new kid- ~ a bone marrow transplant pioney. neer ~ and the Ronald McDonald

After three years of declining House in Milwaukee. kidney function, he now requires “It’s like a bad dream,” he says. dialysis twice weekly and qualifies “I think I’ve blocked out most of to be on the national organ trans- my memories from the whole explant list. He is one of 92,000 peo- perience.” ple in the United States waiting for When I’m introduced to Lee’s a kidney and one of 106,000 on the mother later, I share his comment national transplant waiting list, with her and say as I put my arm according to the United Network around her, “I bet you remember for Organ Sharing (UNOS). everything.” She slowly nods, and

Many local folks know Lee for you can see in her widened eyes the his thriving residential and com- faint remembrance of pain the exmercial computer business that’s perience brought the entire family. been operating in Easton, Md., “Now, here we are again,” she for more than 23 years. Jason’s quietly says with a palpable pang Computer Services has a dedi- of angst. cated cadre of specialists on its The Need for team, including mom Holley Lee, Living Kidney Donors the friendly voice and face greet- A kidney transplant from a living clients coming in to purchase ing donor generally provides better or upgrade a computer or to have a outcomes for the recipient and is bug fixed in one. vital in reducing the time patients

Lee says he doesn’t remember spend on organ transplant waitmuch about his young life when his lists. That’s because living organ

donation offers the opportunity for pre-screening to find the healthiest, best functioning organs, with organs immediately transplanted in a planned setting to preserve functionality.

Every day of waiting also means more opportunities for the recipient’s health to decline. As more people register as living organ donors, the waiting time can be lessened for those needing a kidney to sustain their lives.

“I’m lucky that I own a business and have a great team to take care of our customers,” says Lee. “Because if my kidneys continue to decline, I’ll need to be out of the office with more than two days of dialysis. It’s something I worry about. Will dialysis work? Will a donor be found?

“I can’t imagine how hard this journey would be for, say, a single parent with their employment and health insurance on the line,” he adds.

The American Kidney Fund states that most people wait three to five years for a kidney from the national transplant waiting list in the United States.

Jason Lee with his mother Holley and John Sharp. 64

To address this waitlist, a kidney-paired donation process has been launched to link two or more pairs of living donors to make a compatible transplant.

“This works well when a transplant candidate has someone who wants to donate a kidney to them, but tests show the kidney would not be a good medical match,” says Lee. “It’s a win-win for patients and donors.

“Basically, you can donate a kidney on my behalf to someone else, and in return, the system will move me up on the list and link me to another donor.”

The Process of Becoming a Living Donor

I am generally one of the first to raise my hand when asked to help someone out, much like Tidewater Times publishers Anne and John Farwell, who enthusiastically answered Lee’s written request to

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Living Organ Donor hopefully receive his transplant. I’m already a registered organ dohelp him find a live organ donor nor upon my passing ~ and I know and asked me to write this story. of three people who have benefited They’ve also agreed to share the from a live kidney donation ~ so story with as many people as possi- the decision to inquire and register ble, which is why you may be read- came easily for me. ing it elsewhere as well. Lee says he checks in weekly

So, the first thing I did after with his Living Donor Kidney Rebriefly speaking to Lee on the cipient Coordinator, Jessica Davidphone to set up our interview was son Lewis, RN, at the University of to register as a live organ donor. Maryland Medical Center for news Lee’s life depends on it, as do the of any new registrants who include lives of so many others in need of his name in their online questionan organ transplant. And maybe I naires and surveys. can help. And maybe you can help. “We’ve had about seven people

I immediately went to ummcliv- register and take the questionnaire ingdonor.org to take the online so far,” he says. “And I think we health history questionnaire for need a pool of about 30 on averthe University of Maryland Trans- age to find a qualified donor and/ plant Center’s Living Donor Pro- or match.” gram, through which Lee will For me, the online questionnaire took about 20 minutes to complete, with questions that were very thorough regarding my health, blood type, medications, lifestyle and more. Sadly, it turns out that I am not a live organ donor candidate. It’s easy to see why many people are booted out of organ transplant consideration. The rigorous qualifications to be a live kidney donor also make it easy to understand why living organ donation is preferred for people facing kidney failure because so many unknowns can be ruled out. “I think there’s a lot of disinformation about organ donation out there,” says Lee. “For example,

Living Organ Donor he says, his warm smile filled with gratitude and affection as he looks people think they need to have a at the photo. “Lori’s decision to bedirect match to me to donate, and come a bone marrow donor helped they don’t. give me a life beyond my childhood

“Each kidney that is donated leukemia. Now I have hope that into the system helps more people someone else will step up and anthan just me,” he adds. “That’s why swer that call for me again with a I’m asking your readers to please new kidney.” take the time to look into becoming To learn more about how you a live organ donor or to at least an- can help Lee and/or someone else swer the screening questions. Be- in need, please visit ummclivingcause your donation can save two donor.org. lives. And that’s a big deal.”

Lee says the recipient patient’s Tracey Johns is a storyteller, eninsurance will usually cover the gaging local, regional and national medical expenses of the person audiences through her words and donating an organ. Most donors photography. She has worked in can return to light duty within two communications, marketing and to three weeks of their surgery, or business management for more four to six weeks for more physi- than 30 years, including non-profi t cally demanding jobs. leadership. Tracey’s work is focused

As I head out of Lee’s office af- on public and constituent relations, ter our interview, he shows me a along with communication stratephotograph of Lori Groen and their gies, positioning and brand develextended family. opment and project management.

“I’m still here because of her,”