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.

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So Excited About Life

April 6, 2014
Lisa gets to spend time with her two sons because someone said "Yes" to organ donation.

Lisa gets to spend time with her two sons because someone said “Yes” to organ donation.

Fifteen years after receiving a life-saving kidney transplant, Lisa Givens now has more energy than most people. “I am so excited about life and my two sons, who are now 30 and 23,” Lisa says.

She lives a satisfying life today thanks to the generosity an organ donor.

In 1990, Lisa was a 25-year-old licensed beautician. She finished with her last client one day and noticed that her ankles and hands were swelling. “I immediately knew that something was wrong,” she says. She was rushed to a hospital emergency room where she learned that she had high blood pressure and was suffering from kidney disease. “I was caught off guard with a diagnosis of end-stage renal failure,” she says.

Lisa in front of a memorial to another great organ donation advocate, Walter Payton.

Lisa in front of a memorial to another great organ donation advocate, Walter Payton.

Life changed completely at that point. She went into denial, lost energy and could no longer work, especially after starting dialysis three times a week. “I was barely able to care for my two boys,” Lisa recalls. “I prayed and asked God to allow me to live to see my children reach the age of 18.”

Lisa was placed on the transplant waiting list for a lifesaving kidney. In January 1999, during one of her three-hour dialysis treatments, Lisa received the call that she had been praying for: A kidney match was available for her, and she received her transplant later that same day.

Today, Lisa is an Advocates of Hope volunteer with Gift of Hope, and she is forever grateful for another chance at life. “I am a living proof that organ donation really works,” she says. “I thank my sons for never giving up on their mom. And, most of all, may God bless my organ donor.”


30 Stories in 30 Days: Honoring Loved Ones Through Donation

April 18, 2013
Jim is very familiar with organ donation. One of his uncles was a donor and the other is waiting for a transplant.

Jim is very familiar with organ donation. One of his uncles was a donor and the other is waiting for a transplant.

James Pressley and his family are staunch believers in organ and tissue donation. James is a trained surgical technician in the U.S. Army and has been involved in many organ procurements during his 17 years in surgery. He also is an Advocates for Hope volunteerfor Gift of Hope.

James’ awareness of the importance of organ and tissue donation began when he was aboy. His uncle, Sean Bruce, was thrown from a motorcycle while riding to work in Massachusetts and died from his injuries. Because James had chicken pox at the time, he was unable to travel to the funeral. “I never had the chance to say goodbye to my Uncle Sean,” he said.

When his parents returned from the funeral, they told James that his uncle had changed the lives of many people because he had donated his heart, kidneys, liver, eyes and bones.“At this young age, I decided that I would honor my Uncle Sean and register to be an organ and tissue donor,” James said. “If I could touch the lives of people the way my Uncle Sean did, I knew I would make him proud.”

Today, another uncle, Mitchell Bruce, is undergoing dialysis three times a week and waiting for a kidney transplant. Through his donation advocacy efforts, James is reaching out to educate people about organ and tissue donation with hopes that people like his uncle will receive the lifesaving transplants they need. “These magnificent people (donors) will never know about the many people they save,” James said. “It is up to us to spread the word and educate people about the importance of organ and tissue donation. Through my first-hand knowledge, I can say that organ and tissue donors are treated with the utmost respect and dignity.”


30 Stories in 30 Days: A Father/Daughter Donation Journey

April 17, 2013
The Taylor Family

The Taylor Family

“There aren’t many people who can say they grew up knowing they would be an organ donor,” said Quinetta Taylor. “For me, even as a little girl, I knew that, not only was organ donation important, but it was something very special that would mean a lot to someone. At that time, that someone was my father.”

Quinetta’s father was diagnosed with kidney failure before she was born. She grew up watching him go to dialysis three times a week. When she was 16, she saw the toll that long-term dialysis had taken on him and decided to give him one of her kidneys. “When I made this decision, my father was already listed,” she explained. “Before I could give him the gift of life, someone else did.”

Then things changed in Quinetta’s life. While at college she was diagnosed with chronic kidney disease. “I was entering a world I knew plenty about, but this time I was on the receiving end,” she said. “I could no longer help my father because somehow his lifestyle had now become my own.”

In November 2009, her father’s transplanted kidney began to fail, and he returned to dialysis. Two months later, Quinetta joined him. “When transplantation was first introduced to me, I needed to lose a little over 150 pounds,” she said. “After three years of hard work and losing 120 pounds, I was officially listed in March.” Her father is also going through the process of meeting eligibility requirements to being listed.

“That’s why National Donate Life Month is so special to me,” she explained. “Someone has the opportunity to give my father and me the gift of life.”


Illinois Donor Diaries Revisited – Shelly Pfaff

June 16, 2010

As we approach the 40th chapter of Illinois Donor Diaries, we’re going to take a look back and check-in with writers of previous entries. Almost two years ago, Shelly shared her story. In this entry, Shelly again reflects on her decision to be a donor and her husband’s experience with dialysis and the wait for a kidney transplant.

-Nick

To me, being an organ donor isn’t a choice. Being an organ donor is a gift I can give when I can’t give anything else. When I met my husband he was on dialysis, for the second time in his life. He suffered kidney failure when he was 29. He was too young to be dealing with a lifetime of illness. He was on dialysis for 3 years when he received the gift of life from a donor and received a transplant. That transplant lasted for 5 years until his body rejected it and he found himself being kept alive again by dialysis. I met him during this round of dialysis. He and I endured this lifestyle for 4 years before we received the call that there was another kidney for him.

The first call from the transplant coordinator resulted in a definite match, but there were a few other people ahead of him on the list that also matched. We waited again for the next phone call to come in. About a month or so later it did. As we were waiting to hear if the kidney was a match or not, we packed our bags and were ready to go. Finally, after a grueling 8 hours, we got the phone call. Again, good and bad news. It was a match and would have been his kidney, but the donor family had some disagreements and decided at the last minute NOT to donate the organs. After many tears shed, he went back to dialysis again the next day. We would just have to wait until there was another available kidney.

September 22, 2004 my husband finally received the life saving transplant that would get him off of dialysis once again. After living through this experience of seeing how important organ donors are, seeing someone I love so much having to deal with dialysis, diets, and fluid restrictions like he did, I do not view being an organ donor as a choice. It is something I have to do. I am grateful that the State of Illinois has first person consent registry so nobody has to go through the same disappointing heartache that we did, knowing there was an available organ for my husband just to have the family go against the donors wishes. My husband still lives with some limitations, but considering his life now compared to being on dialysis, this is what life is all about. I see color in his skin again and a smile on his face. I could never be more grateful to the person that chose to save other people’s lives when his own couldn’t be.

Shelly Pfaff
Morris, IL


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Rogue Wave Organ Donation Documentary to Screen in Chicago

September 18, 2009

Long-time readers may recall that we’ve posted about the trials and tribulations of the band Rogue Wave in the past on here.

As a quick recap, the band’s drummer, Pat Spurgeon, was in dire need of a kidney transplant in 2006. Working through the struggle of being a touring musician on dialysis, Pat received his kidney in 2007. In a crazy twist, the band’s former bassist, passed away in a tragic house fire in 2008 and went on to become a donor.

The band has now released a documentary called D tour that takes an inside look at Pat’s struggle for a transplant just as his career was taking off.

The Chicago Cultural Center will be screening the film this weekend!

Details are as follows:

Saturday, September 19th, 2:00 PM
Chicago Cultural Center in the Claudia Cassidy Theatre

78 E. Washington St.
Chicago, IL
FREE
Event, Open to the Public

In addition, the event will feature a panel discussion on organ/tissue donation with the following guests:

Alison Smith, Vice President of Operations, Gift of Hope Organ & Tissue Donor Network;
Dr. David Hinkamp, Founder, Co-Director, Health in the Arts Program, University of Illinois at Chicago
Tyler Beach, Musician
Moderator: Carrie Shepherd

Hop over here to check out more details and be sure to watch the trailer below!

-Scott

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Illinois Organ Donor Diaries – Chapter 29 – Y Not?

May 26, 2009

Today we’re proud to bring you the latest chapter of our Illinois Donor Diaries. Thank you Pam!

– Joslyn

pam

Pam

My name is Pam. My story begins when I was only 19-years-old.

I dealt with extreme fatigue and at times joints that hurt so bad, I could not move without pain. One morning, I woke up and instantly new something was wrong. My thighs had ballooned three times their normal size and I could not see my feet. I immediately went to the emergency room, where a series of tests revealed that I had kidney failure. My kidneys were working at less than 17% at that time!

I was diagnosed with Lupus. Lupus is an autoimmune disorder where the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies that essentially attack the body itself. This causes inflammation, pain and damage to various organs. There was no cure for the damage already done to my kidneys, but the doctors were able to “control” the progress of the disease temporarily. At that point, my doctor my told me I would need a kidney transplant within a couple of years.

A kidney transplant was about the furthest thing from my mind. I was 20-years-old and my life was just beginning. I lived on my own, had a job and attended college. This did not fit into my “plan”. I felt I would be fine if I just kept positive thoughts and watched my health closely. I didn’t even look sick!

Nearly ten years later, I became anemic, had little energy and my kidney function was rapidly decreasing. At that point, I had two kids and was running my own small business. I just could not keep up.

I did as much research as I could about transplantation. As a recipient, a huge commitment is made when you accept an organ. You want the transplant to be successful and you do everything you can to make it so. I decided to go through the process and was listed on the transplant waiting list.

The next year I started dialysis. My kidney function had decreased to such a dangerous level that I risked death without dialysis. I went to sessions three times a week for three and a half hours each session while the machines cleaned my blood. I had opted for in center dialysis because I did not want my kids to see their mom hooked up to a machine. After a year and a half of this routine, I received the call that changed my life.

At 2 a.m. on May 22, 2007, I received a call from the transplant hospital. There had been a family who, in a time of great loss, decided their loved ones organs would be donated to someone in need. I was one of those lucky ones that day!

I have been in contact with that family, now my donor family. We have exchanged letters. In my letter, I expressed my deepest gratitude and let them know how well I am doing. In their letter, I was told that my donor, Mark, was an outstanding member of the community and a police officer. Mark’s wife wrote, “We miss him dearly but it gives us great comfort that he was able to give life to others. To hear how it has changed your life and that you are doing well helps to ease the pain.”

Organ donation gave comfort to a grieving family. Organ donation gave me a second chance at life. Be an organ donor.

– Pam
McHenry, Ill.

pams-car

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