“We Have to Dispel the Fears”

April 29, 2014
Sonji Woods

Sonji Woods

Ten years ago, realtor and U.S. Army Reserve veteran Sonji Woods was planning her wedding. Business was great. “I was just starting my life,” she recalls.

That’s when her doctor told her that her kidneys would eventually fail. She didn’t feel or look sick. She went on with life and wedding plans. But in November 2007 she woke up one day with dizziness that only grew worse. She drove to the hospital and was immediately admitted. “I was told I had enough toxins in my body to kill a six-foot, 220-pound man,” says petite Sonji, who stands just 5’2.”

She was put on kidney dialysis the next day. “It was a shock because no one in our family had ever suffered from kidney disease,” she says. “I was always thin, I was active and I ate right most of the time. How could I be diagnosed with a life-threatening disease?”

Without other physical issues, Sonji was told she was an excellent candidate for a kidney transplant. But her heart sank at learning it might be years before a kidney donor became available. She wondered: “Could I be on dialysis that long and maintain a decent quality of life? Would I even live that long?”

Over the next four-and-a-half years, Sonji suffered multiple internal infections, severe fatigue and anemia. She endured extended hospital stays and allergies from the drugs required to treat her infections. Her appearance changed. “It was bad! It was just as hard on my family. My marriage took a hit. But my mom stepped in, and she has been phenomenal.”

In what felt like the nick of time, Sonji says, the telephone call came: A kidney donor was available. She underwent a kidney transplant, and today, “I have gone back to full-time real estate sales, and I am doing great!” she reports.

As an Advocates for Hope volunteer for Gift of Hope, Sonji spreads an important message. “We have to dispel the fears and negative moral stigmas attached to organ and tissue donation, especially in our minority communities,” says Woods, who is African-American. “Minorities make up the largest group of people needing organs, so we should be the largest group of donors.”

Even before she needed a kidney transplant, Sonji had “organ donor” on her driver’s license. “I knew I wanted someone else to have my organs. Six years is just too long to wait for a lifesaving organ.”


A Father’s Lasting Gift of Life and Love

April 11, 2014

 

Erin and her dad at the Transplant Games.

Erin and her dad at the Transplant Games.

Erin Fitzgerald arrived two weeks early on June 28, 1996, a petite 5 pounds, 1 ounce and 18 inches long. Everything seemed to be fine, except for her poor appetite.

She began losing weight, and her doctors ordered all kinds of tests, which determined she had dysplastic kidneys. Her kidneys were not completely formed and had very little function. She was just two weeks old.

A nephrologist told Erin’s parents she would be on dialysis within six months. Her best hope for survival was a transplant, but for her tiny body to receive an adult kidney, she had to weigh 20 pounds. It was devastating news.

Erin’s parents worked diligently to fatten her up. They tucked a bottle in her mouth as she slept so her sucking reflex kicked in and she took in a few ounces. Weight gain was slow, so doctors recommended a feeding tube.

“We would feed through a tube in her stomach several times during the day, and a pump would run formula into her all night,” her mom, Jamie, recalls. “She did start to gain weight, but she was so sick all of the time. She threw up constantly. It was a struggle to keep the weight on.”

Erin’s parents were thrilled their daughter’s kidneys continued to function until fall 1997, but they realized a transplant deadline fast approached when her ongoing test results showed a decline in her health status. As desperation levels rose, Erin’s dad, Pat, was tested as a potential living kidney donor.

He was a match.

Although Erin weighed just 18 pounds at 18 months of age — two pounds under the target weight for a transplant — her doctors said the time was right. The transplant surgery was performed on Dec. 29, 1997, at Children’s Memorial Hospital of Illinois at OSF St. Francis Medial Center in Peoria, Ill.

Erin on dialysis with her dad.

Erin on dialysis with her dad.

Erin’s family rejoiced that the transplant was a success. Some complications arose, and Erin spent a month in the hospital. And more surgeries followed to repair a renal artery and two bowel obstructions. But she overcame all obstacles she encountered.

Since then, Erin has made the most of life, winning medals in four U.S. Transplant Games and enjoying soccer, basketball, softball and snowboarding. Now s a senior in high school, she works to promote organ donation as an Advocates for Hope volunteer with Gift of Hope and plans to attend college, thanks to the generous gift from her dad.


Illinois Donor Diaries – Chapter 35 – Share Your Toys, Share Your Life

November 18, 2009
michelleminkoff_transplant_photo

Michelle and her Aunt

Michelle shares the latest chapter from our Illinois Donor Diaries about her kidney transplant and the essence of sharing – fitting for the season.

Please submit your story here if you’d like us to share your personal tie to organ and tissue donation.

Thanks,
Joslyn

When we’re young, we’re taught about sharing.  If you have two dolls, and your friend wants to play with one, you should give one to them, and then you both get a toy.  While donating organs isn’t the same, it follows a similar philosophy.  It’s not easy to think about, but for those of us lucky enough to have received organs, it’s difficult to think about how our lives might be different.

When I took my driving test and was asked if I would like to register to be a donor, the decision seemed easy.  I never knew I would need a kidney down the road.

I have believed in the philosophy of sharing from a young age, and now I believe in it even more, having needed a kidney and received one from my aunt, as a living donor.  While I might have had to give up my life as I know it, everyone who meets me can’t believe I have had a kidney transplant.

As a journalist, I devote my life to telling the stories of others, but this is one case in which it is impossible to remain objective.  To those of us who have participated in the process, it’s not a question of giving something up, but gaining a special bond as humans.

Of course it’s a personal decision, but I recommend to everyone that they at least consider registering to be a donor.

No matter how different we are, we’re connected, and that’s why we need to support each other.

~ Michelle M.
Evanston, Ill.

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Inspiring Organ Donation Videos

July 10, 2009

We wanted to share a couple excellent videos addressing the topic of organ donation. First, hop over to www.decisiontodonate.com where you’ll find a film about two men, one in need of a kidney and the other willing to donate.  The film won a first place award at this year’s Donate Life Hollywood Film Festival. Congrats!

In addition, we received a very nice note from a filmmaker named Jonathan, who recently posted this very powerful video below. Be sure to check it out. Thanks Jonathan!

-Scott

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World Kidney Day is March 12!

March 11, 2009

Did you know?

March 12th is World Kidney Day!

Why a World Kidney Day You Ask?

According to the site above:

Chronic, non-communicable diseases (particularly cardiovascular disease, hypertension, diabetes mellitus and chronic kidney disease) have now replaced the communicable diseases as the leading threat to public health and health budgets worldwide.

The cost of treating these diseases can be very expensive which is why it’s crucial that prevention steps are taken to keep your kidneys healthy!

You can even hop over and take this test to check how knowledgeable you are about your kidneys.

A Perfect Match

One of Donate Life Illinois’ own transplant community members, Kelly, is taking World Kidney Day to heart by donating a kidney to her younger brother tomorrow! Kelly’s brother has had Type 1 diabetes since 1983 and is in need of a transplant. We’ll keep you posted when we hear how everything goes. In the meantime, join our community and drop her a line of support.

Last but not least, enjoy this little video to celebrate the occasion tomorrow:

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Illinois Donor Diaries – Chapter 25 – Saving Dad

January 22, 2009

Today, we introduce the 25th chapter of our Illinois Donor Diaries. Beth shares her incredible story and multiple ties to the issue below.

Thanks Beth!

– Joslyn

Beth and her Dad

Beth and her Dad

Throughout my life I have learned about the need for organ transplants through various ways – a very young family friend who needed a liver transplant and died waiting, a co-worker who donated a kidney to her father, my friend’s father who had not just one, but two heart transplants, my friend and co-worker who lost her young, healthy husband to a brain aneurysm and donated his organs to save several lives, including taking two people off dialysis, and eventually my own father who needed a kidney transplant.

When I received my first drivers license at the age of 16 I immediately signed the back and told my parents of my wishes to donate my organs if I was to die and had my mom and sister witness my signature; this was back in the day where that’s how one could join the registry.  At that time, I had no idea that I didn’t even have to die to donate an organ or how much of an impact organ donation would have on me and my family.

Several years later, my father was diagnosed with Polycystic Kidney Disease (PKD).  This disease is hereditary and causes cysts to grow all over the kidneys and eventually caused his kidneys to stop working.  When he began the tests for a transplant, the doctor found an eyelet cell tumor on his pancreas.  Although the tumor was removed, he had to go 5 years cancer free before being eligible for a transplant.

Meanwhile, dialysis sustained his life until he was eligible for transplant. Maybe it is because of my past experiences or the time waiting for my dad to be eligible for a transplant that I had no hesitations to give him one of my kidneys.  After many tests and many days of waiting and anticipation, the doctors gave us the okay to proceed.  On June 26, 2008 I was able to give my father the “gift of life” by giving him my left kidney.

Over 100,000 Americans are on the UNOS waiting list for a transplant.  The most needed organ is a kidney with almost 78,000 Americans waiting for one.  Most people are born with two kidneys and only need one to survive.  The second highest needed organ is a liver.  Almost 16,000 Americans await a liver transplant, which can also come from a living donor.  If just one family member, friend, or even a complete stranger would donate a kidney or part of their liver to these 94,000 people, the wait list would be reduced to only 6,000!

The feeling of saving a life is indescribable… not just for living donors but also for the family of a deceased donor.  So, why not give the gift of life… when you are alive, or after you pass on… or both!

Beth Johnson
Loves Park, IL

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Social Media Helps Mom Find Kidney Donor for Daughter

December 3, 2008

An amazing thing happened last month. A young girl’s life was saved thanks to the power of the Web.

On November 12th, a Mom in New York named Lisa posted about her daughter’s need for a living kidney donor to help save her life. In her post, Lisa issued a plea to all her blog readers to fill out a donor eligibility questionnaire in the hopes of finding a potential donor for her daughter, Marielle. The post prompted 189 comments and spurred readers to action.

The original post above seeped out to Lisa’s 418 followers on Twitter (microblogging service with over 5.5 million users…you can follow DonateLifeIllinois on Twitter as well) who helped spread the call to action to hundreds of others. You can see the activity here on search.twitter.com where you can trace back everyone who helped pass on the info through their own Twitter updates. Quite mesmerizing.

Marielle’s condition continued to deteriorate but we later learned from Lisa that a donor match was found and an update earlier this week reports on Marielle’s adjustment and recovery progress.

It’s truly a sign of the times as we think about how the Web and different social media tools enable us to connect in such a simple, fluid fashion and build communities of support.

Our best to Marielle for a swift recovery with her new gift of life this holiday season!

-Scott

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