Kelvin’s Big, Loving Heart

January 27, 2014

Kelvin Martin is many things. He’s a deejay (DJ Flash … watch out for him), a father, a husband and a heart transplant recipient.

Last summer, Kelvin burst through the front doors of Gift of Hope for his first Advocates for Hope training. Since then, he’s inspired the Gift of Hope team with his boisterous, loving personality. He has reminded us of why our work is so vital to countless people across Illinois and Indiana.

On January 27th, Kelvin walked out of Rush University Medical Center as a new man with a new lease on life. We thank the selfless donor that allowed Kelvin to keep his beat going.

You can make a difference for others, like Kelvin, by registering as an organ and tissue donor at http://www.GiftofHope.org!


30 Stories in 30 Days: The Ecstasy of Giving

April 2, 2013

Advocate Amber Sanders and her mother

Amber Sanders had planned to be an organ donor but not a living one. Things changed when her mother went into kidney failure.

Amber said she was raised knowing family is the most important thing, and if someone in the family is in need, “You do everything you can to help.” When it was clear that her mother needed a kidney transplant, Amber said, “I instantly knew I would be her donor.”

Amber thought of donating her kidney as an act of giving back. “I never looked at this as me giving Mom my kidney,” she said. “This was always her kidney. I was holding onto it for this exact moment.”

Sheila&Amber

Amber and her mother prepped for transplant

Although it is uncommon for a parent/child to be an exact match, the tests were positive. “To have us be a perfect match confirmed this was the right thing to do,” Amber said. “I was ecstatic!”

The donation process was tedious, but in the end Amber said, “Every bit of it was worth it to see my mom healthy.” She pointed out that having the support of her family, friends and church community helped.

“The best part is that now my mom says she no longer feels like she’s 63,” Amber said. “Now that she has a 30-year-old kidney, she’s found the fountain of youth.” Amber is now an Advocate for Hope for Gift of Hope. “I want people to know that living organ donation is truly a gift. And to be a blessing to someone else is the best way to live your life.”


30 Stories in 30 Days — Alicia’s Donation Story

April 1, 2013

April is National Donate Life Month and Gift of Hope is celebrating it by sharing stories from organ, eye and tissue donation advocates from across Illinois and northwest Indiana.

Each day throughout April, the Gift of Hope Blog will share the donation story of a family that was affected by donation. We hope that these stories inspire you to say “Yes” to organ, eye and tissue donation and share your decision with others.

whitworth 234Alicia and her family (including her father Paul)

We all have moments in life that are frozen in time, giving us the uncanny ability to remember every facet in extreme detail. The smells. The sounds. The layout of a particular room.

July 27, 2012, is that day for me. I can tell you what I was wearing, what song played on the radio before I got out of my car, the exact order I had just picked up at Subway and that the sun was shining. I can also tell you how I was unable to explain to my husband that he was going the wrong way, about the woman who dropped to her knees in prayer after seeing us running through the hospital and the about closed door the chaplain opened to explain what had happened.

My dad, Paul, was always telling jokes, wanting nothing more than to make people laugh and go out of his way to help others. He loved the St. Louis Cardinals, animals, old westerns, random documentaries and all things Irish, Navy and Notre Dame. As the oldest child, I was given the title “Daddy’s Girl” at a young age. He fixed my computer, sent money in college and taught me that if it moves and it isn’t supposed to, duct tape it. And if it doesn’t move and it’s supposed to, WD-40 it.

image0_0001Alicia and her parents on graduation day

Our thing was gardening. We planted a huge garden together every summer, not because our family needed that much, but because he would take the extras to friends, coworkers and food pantries, reminding us that people are hungry year-round, not just during the holidays. That silly, over-the-top Irishman was always giving.

On July 24, 2012, my father-in-law suffered a massive heart attack. Three days later, my father suffered a massive heart attack while driving. A passerby pulled him out of his vehicle and performed CPR. He was stented at the hospital. Both men underwent hypothermic therapy, a process to cool the body during a 24-hour period to preserve brain function after cardiac arrest. On August 1, my father-in-law went home. That same day, my dad passed away at age 50 due to brain trauma.

Because of the circumstances surrounding his brain injury, there was a two-day span between when we knew my dad wouldn’t be coming back to us and when he could be taken off ventilator support and his organs could be donated. All I remember thinking is how cheated I felt and how I didn’t want to wait the two days — going home knowing I had to come back again and do it all over seemed unbearable. Even as a registered organ and tissue donor myself, I didn’t want him to donate his. I just wanted him to wake up. I wanted my dad back, my future kids to meet their grandpa.

Skip ahead eight months to a still-grieving, but more rational Alicia. I tell people I now fully understand why laws exist to ensure that people’s wishes are carried through — because grief is a powerful, irrational thing. My dad was proud to be a registered organ and tissue donor, and he would have wanted nothing more than the chance to save and improve lives through his selfless gifts. This is why I wish we had thoroughly educated ourselves about the organ donation process and talked about it more as a family: It impacts everyone involved.

Now, being an Advocate for Hope for Gift of Hope is a way for me to carry on my dad’s memory in a way that impacts others positively. I know that he saved the lives of two other dads by giving them kidneys. I know he gave people the chance to see their loved ones again through the gift of his corneas. I know he’s helped burn victims through skin grafts. On average, 18 people die each day waiting for a transplant, yet one donor can save or enhance the lives of more than 25 people. My dad’s gifts, and those who continue living full lives because of them, make it the tiniest bit easier for me to deal with the loss of my daddy. I find peace knowing how many others get a second chance with their loved ones because of my loved one.

Before losing my dad, I was a registered organ and tissue donor, but 18-year-old me had no idea what that really meant. I knew I’d help others; I knew it was the right thing to do. But I had considered only the gift that transplant recipients receive, never the situations facing donors and their families. But I’m here to say that it’s a gift to be the daughter of an organ donor as well. Through the selfless act of my dad and so many others, families receive a second chance at life.

Do you know someone who has been touched by donation? More than 117,000 Americans are on the national waiting list, with more than 5,000 in Illinois alone. What does tomorrow hold for you? We’re all just one phone call away from being on our knees. It could be you. It could be a loved one. It could be a stranger. But saying “yes” to being an organ and tissue donor can save all of those lives and more.

If you’re a registered organ and tissue donor, I encourage you to educate yourself and your family further on this selfless decision you’ve made. If you’re not, I urge you to register today at GiftofHope.org because Life Goes On.

– Alicia Whitworth


Vikki’s Donation Story

April 23, 2012

Vikki Tulcus is an amazing advocate for organ and tissue donation. She has spent the last 10 years of her career building organ and tissue donation awareness and encouraging Illinois residents to register as lifesaving donors. Vikki’s journey within the field of donation became very personal in 2009 when she was diagnosed with a renal disease that will eventually require a kidney transplant.

Throughout April, Vikki is featured in Illinois Secretary of State Jesse White’s commercial to promote organ and tissue donation. Below, Vikki tells her story in both video and print. 

For the past 10 years, I have worked within the field of organ and tissue donation. My roles have, primarily, allowed me to work with donation recipients and donor families to promote organ and tissue donation throughout Illinois. I began my career with Gift of Hope Organ & Tissue Donor Network where I gained valuable insight into donation and my eyes were opened to the overwhelming need for registered organ and tissue donors.

In 2007, I joined the Illinois Secretary of State Organ/Tissue Donor Program as the Community Outreach Coordinator for Chicago where I continue to work tirelessly to build organ and tissue donation awareness. My job responsibilities have me traveling the state and working closely with Illinois Secretary of State Jesse White to encourage Illinois residents to register as lifesaving organ and tissue donors.

My personal and professional lives became enmeshed on November 13, 2009, when I became extremely ill. I knew something was drastically wrong when breathing became difficult and I grew too weak to walk. I thought it was just an extreme asthma attack and went to the emergency room after my condition worsened. My situation was critical, and doctors worked to save my life. Within hours, I was diagnosed with Wegner’s Syndrome—a rare, autoimmune disease that is chronic and can be fatal. I was told that I was in renal failure and required immediate dialysis. 

Since that day, my life has changed dramatically. I continue to work full time for the Illinois Secretary of State and juggle the responsibilities of daily life. But, each night, I hook myself up to a machine that spends the next 10 hours doing the work that my kidneys no longer can do. My name has been added to the national transplant waiting list for a kidney. Each day, I hope for my lifesaving gift. Unfortunately, in Illinois, the average wait time for a kidney transplant is approximately seven years.  

As I wait for a new kidney, I find hope in the stories of recipients who are grateful for their second chance at life. When I search for a meaning for my illness, I am inspired by stories of heroes who have selflessly donated their organs and tissue to save others. Each day that I wait, I am hopeful that a donor will save my life.  

– Vikki Tulcus, Community Outreach Coordinator, Illinois Secretary of State’s Organ/Tissue Donor Program

Give Vikki and more than 5,000 Illinois residents a second chance at life by registering your decision to be an organ and tissue donor at DonateLifeIllinois.org! Learn more about Vikki and the Illinois Secretary of State’s Organ/Tissue Donor Program at LifeGoesOn.com.


Illinois Donor Diary – Team Swanson

December 8, 2011

A few weeks ago, we asked Robyn Swanson to write a short blog post about her experiences with organ and tissue donation. Robyn has a unique perspective on organ donation. Her twin boys, Jake and Luke, were diagnosed with biliary atresia which caused both to need liver transplants.

The Swanson Family

Our twin boys, Luke and Jake, became the newest members of “Team Swanson” in October 2008. At birth, they were the picture of good health. But it soon became apparent that something wasn’t right when the slightly yellow, almost jaundiced appearance, associated with newborns lingered.

Just three months later, we received devastating news from the doctors at Children’s Memorial Hospital. Luke and Jake both had a rare disease called biliary atresia, a condition in which the liver’s bile ducts develop improperly. The doctors at Children’s Memorial were as shocked as my husband and me since they were unaware of a case of twins both being diagnosed with this condition.

The exact cause of biliary atresia is unknown, but experts believe that during the third trimester of pregnancy something causes the fetus’ liver to attack itself. The build-up of bile causes irreversible cirrhosis of the liver. The only cure for my boys would be liver transplants. Both were place on the national organ transplant waiting List in fall 2009. Our family’s wait for two healthy boys was under way.

Waiting for a new liver.

On August 11 of this year, after almost two years of waiting, we were blessed with a call from the transplant team at Children’s Memorial. They had amazing news—there was a match for Jake. He received his new liver on August 12 and has experienced an amazing recovery. He is a new kid, full of energy and life!

As a family, we now find ourselves in an unusual and uncomfortable place.  We are excited and relieved for Jake, but we still feel very anxious and concerned for Luke as he continues to wait for a transplant. We are hopeful for Luke and his future and anticipate the day he will be able to run, laugh and play like his brother Jake.

As a family, we often reflect back on our journey. One of the first thoughts we had when we saw Jake in recovery was that donor family was in the opposite situation that we were in. They were grieving while we were joyous for Jake and his future. My eyes fill with tears when thinking about them. They decided, in their darkest moment, to help Jake and others like him during their unspeakable tragedy. We are forever grateful to this anonymous family for their gift of life.

The Swanson boys on the way to the Bears game.

This September, our friends at Children’s Memorial and Donate Life Illinois asked Team Swanson to join them at the Bears versus Packers game at Soldier Field. Of course, we said “yes” and were excited to go.  The smiles on all of our boys’ faces that day were priceless as we walked on the field. It was an encouraging reminder of all of the wonderful memories that are yet to come—memories made possible by offering the amazing gift of life through organ and tissue donation.

The boys at Soldier Field.

Robyn Swanson

Register your decision to save lives by becoming an organ and tissue donor at DonateLifeIllinois.org!


Dan’s Second Chance at Life

June 6, 2011

Dan D. is a recent liver recipient from the Chicago Metropolitan Area.  On March 1st of 2011, Dan was given an amazing gift of life from a selfless donor.  Now, Dan is committed to dedicating his time and talents to building organ and tissue donation awareness and registering donors.

Dan and his wife Nancy

I was one of the lucky ones.

In 2001, I lost consciousness on a commercial flight from Denver to Chicago. My first thought was that I had a severe case of the flu. Upon landing in Chicago, I was taken to the hospital and immediately admitted. After two days of testing, doctors found that I was anemic from bleeding stomach ulcers caused by aspirin, which I had used regularly since turning 50.

They also found something else that was both urgent and potentially life-threatening. Tests revealed that I was experiencing elevated liver profiles caused by cirrhosis of the liver. I was fortunate because they found the issue early while I still had a high-functioning liver. However, my team of doctors and I were determined to limit any further damage.

We decided that the best course of action was to schedule me for an abdominal scan every six months to check for liver cancer. In 2008, the liver team found a small, potentially cancerous lesion on my liver. After three biopsies done over several months, I was informed on September 9, 2009, that I had liver cancer and would need a liver transplant to stay alive. Within days, I was on the national transplant waiting list.

Dan enjoying his second chance at life.

My situation forced my family and me to learn about life on the transplant waiting list. My wife Nancy, my two grown daughters and I researched my disease and treatment. We also reached out to friends who had received transplants and those like me who were waiting. After months of diligent research, I felt I was one of the most informed patients on the waiting list and that everything would be all right.

The next 18 months were a combination of waiting and preparing. I was called to the hospital three times and prepared for surgery. Each time I was told the liver was not a good match. On February 28 of this year, I received a call I will never forget. There was another potential match. Luckily, this call was not a false alarm—I received a new liver and a new lease on life.

Dan at work shortly after his transplant.

My recovery went quickly, and I was back at work after 30 days and back into my normal, active routine after only 90 days. I was blessed with the support of a wonderful family and a talented transplant team that was fully dedicated to saving my life. But none of this would have happened, and I would still be waiting if my donor hadn’t decided to register his or her decision to give life through organ donation. Someone unselfishly decided that he or she wanted to save someone’s life by registering as an organ and tissue donor. This was truly a gift of life that I will treasure forever. My family is eternally grateful to the family—and the donor—that decided to give me a second chance at life.

Now that I’ve had a chance to reflect, I’m amazed at how little my family and I thought about organ and tissue donation before I learned that I would need a new liver. I now realize how important it is to give the gift of life through donation. After reading my story, I hope you do, too. Please take a few moments to learn more about donation and to register your decision to be an organ and tissue donor at DonateLifeIllinois.org.

Dan D.

To learn more about organ and tissue donation and to register your decision to donate life, go to DonateLifeIllinois.org.  For more information on Dan and his transplant, visit Dan’s Liver Blog.


Share Your Story: Part 1

April 6, 2011

In early March, Donate Life Illinois asked its Facebook fans and Twitter followers to share their stories about why they support organ and tissue donation.  Throughout National Donate Life Month, we will feature several of the stories that were submitted via our social media outlets.  Enjoy!

Mia’s Story (submitted by Trista Royer)

My daughter, Mia, was born with gastroschisis.  Gastroschisis is a birth defect that causes the intestines to grow on the outside of the body.  We were told that Mia’s birth defect would be a quick fix with surgery.  Unfortunately, we would later learn that Mia needed a transplant.

Mia had her first surgery to correct her birth defect at just 31 weeks.  During this surgery, doctors discovered that Mia only had 12 cm of viable intestine. Doctors then diagnosed her with a condition known as severe short bowel syndrome. This left Mia unable to ingest any food (not even an ounce of formula).

Mia was taken to Children’s Memorial Hospital in Chicago for bowel rehabilitation.  Doctors worked tirelessly to help Mia for more than a month with little to no improvement.  She was placed on total parenteral nutrition through a central line in her chest because of her inability to eat. After witnessing months of corrective surgeries, I was told that Mia’s final hope was a small intestine transplant. On February 14, 2008, when Mia was just six months old, she was placed on the national transplant waiting list for a small intestine.

Mia

 

Throughout the next year, Mia went through numerous central and PICC lines and many infections trying to keep her body well without food.  On February 4, 2009, almost a year after being listed, we received a call from Children’s Memorial Hospital’s organ procurement team.  They had great news—a potential donor.

We were thrilled at this news but also nervous.  We drove Mia to Children’s Memorial where Mia went through dozens of preliminary tests to ensure that the donor organ was a match for her.  She was taken to surgery around 10:30 that night, and her new intestine was transplanted around 1 a.m. on February 5.

Mia had a two-month recovery at Children’s Memorial and is doing amazingly well today.  She is two years post-transplant and living the life of a healthy three-year-old. Her doctors told us that she is the “poster child” for bowel transplants.


The Royer Family (Mia, Ben, and Trista)

 

As our story illustrates, organ donation is so very important.  Without this gift of life from our donor family, my daughter would be living on borrowed time or may not be living at all.  My husband and I are both registered organ/tissue donors. If anything ever happened to either of us, we wouldn’t think twice about donating to families that are in desperate need.  We understand that the pain of losing a loved one is severe, but we also have first-hand knowledge of the impact a single organ donor can have on people’s lives. We get to see smiling proof of the gift of life through donation every single day.

For more information about Mia and the Royer family, go to http://www.miaroyer.net.

To register your decision to be an organ and tissue donor in 30 seconds or less, visit DonateLifeIllinois.org.


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