Editor’s Note: Steve Ferkau is a long-time friend of Gift of Hope and a staunch donation advocate. In 2000, Steve received the gift of life from Kari Westberg, a 17-year-old girl from Iowa, transforming his life forever. Steve recently shared his story at A Celebration of Hope, an annual event that Gift of Hope holds to honor donors and donor families for their selfless decisions to turn tragedy into triumph through donation. Through his moving story, Steve paints a word picture of the many benefits that donation offers to transplant recipients like him and, by extension, to donor family members who say yes to donation. Here is the story he shared with the more than 100 donor family members who attended the event, edited for length and clarity.
One person. One thoughtful, compassionate person making a decision voicing his or her desire. Sometimes, one family. In a heartbreaking moment. Honoring that decision made by their loved one. Or maybe stepping back and making a choice on behalf of their loved one.
Choosing to donate their organs and tissue. Because of that decision, someone’s heart is beating strongly and steadily for the first time in a decade. Someone — maybe two someones — is or are breathing better than he or she has in years. Maybe better than in forever.
Someone is seeing the face of a spouse who has only been a distant memory. Or maybe seeing the face of a grandchild for the first time ever. Two people are no longer tied to the torture of dialysis. And maybe one of them is no longer diabetic. Someone is waking from a coma with a new liver and hugging a family who thought they may never be hugged again.
You did that. You witnessed that. You helped that happen. About 18 years ago, someone helped that happen for me.
Her name was Kari.
Kari was 17 years old. She was intelligent, a member of the National Honor Society. She was athletic, a star middle-hitter on her high school volleyball team. She was also opinionated, stubborn, outspoken. And she had a smile that lit up the world.
One night, a little over 18 years ago, this beautiful girl was having dinner with her family in Iowa. She brought up the topic of organ donation, and without hesitation she said she did not understand why someone wouldn’t want to help someone else when they were through with life here.
A couple of weeks later, Kari and her sister, Alyssa, were swapping driver’s licenses, checking out each other’s pictures. Kari’s mom recalled that Kari jumped all over Alyssa because she didn’t have “organ donor” indicated on her license.
A few weeks after that, Kari’s family had a tragic decision to make. One that many of you also had to make. But Kari had already helped them with that decision. At the most devastating moment in their lives, Kari’s family reached out and saved my life. Kari brought her big, beautiful smile into my life on April 8, 2000, when she and her family gave me both of her lungs.
I have cystic fibrosis. Forty years of my life were filled with physical therapy, medications and hospital stays. After getting a routine collapsed lung fixed in my 20s, I remember making a little mental decision that I was not going to get the next one fixed. I would just ride it off into the sunset. I think it was fear more than pain that made me feel that way — fear of whether they would be able to fix the next problem I encountered.
A few years later, I fell in love with my princess, Laura. I found that love trumps fear. I got my next collapsed lung fixed. But my next one was also my prelude to transplant. I waited almost three years for Kari’s gift. During that time my lung capacity was 10 percent of expected. I was on oxygen around the clock. Laura, a therapist, and my family pounded on my chest for eight hours every single day.
They pounded so hard that I broke ribs six times during those three years.
Every night while I was winding down from my last two-hour pounding, I sat in the dark in my bed for an hour before I went to sleep. I said my prayers. I’d ask a lot of people up there for help. I couldn’t bear the thought of leaving Laura. And I’d always think about my future donor, and I’d pray that he or she was enjoying life. I’d think that maybe I could hold out just a little bit longer and give them a little more time to finish what he or she had to finish.
Nowadays, I open my eyes in the morning, I stretch and I take a breath — and I don’t hear my chest gurgling. It’s been over 18 years, and I still walk around in complete awe of how this feels. There is a double flight of stairs from the trading floor where I work to my offices that I hadn’t climbed in 10 years. I didn’t even go down them five years before transplant. Now, every chance I get, I bound up those stairs two steps at a time. And every time I get to the top, I smile — because I know who got me there.
After living almost 39 years with crappy cystic fibrosis lungs, you cannot possibly imagine what it feels like to breathe normally. I feel like someone slapped a silly red and blue spandex outfit on me, gave me a long red cape, smacked a big “S” on my chest and told me, “Go ahead!
Take on the world!”
In my teens, running a block would have left me gasping for breath. By my 30s, that would have only taken a walk. Thirteen months after Kari smacked that big “S” on my chest, I ran the Y-Me
5K. The last quarter mile I could not see the finish line because my eyes were flush with tears.
For the past 16 years, I have participated in a stair climb in Chicago called the Hustle Up the Hancock. My team is named Kari’s Klimbers, and over the past 13 years I’ve had dozens of Kari’s friends and volleyball teammates, and even her family, come out to climb with me. These crazy, beautiful people climb 94 floors — 1,600 steps — with me every February. We climb to honor Kari and the gifts she gave. And to honor all donors and donor families. Sometimes people ask me if I can feel her around me, and I tell them, “I don’t know.” But I’m not sure that’s true. When I’m around Kari’s friends, my heart dances. I feel like a puppy whose little boy just came home. I’m surprised my butt doesn’t wag when I see them.
Another hint of how special Kari was and how special her friends are: Six years ago, because of the myriad drugs I take to keep Kari’s lungs, my kidneys failed. Kari’s friend, neighbor and volleyball teammate, Alex, had her hand up in a heartbeat. She became a living donor and gave me one of her kidneys. My Laura asks, “Just how much does a little town in north central Iowa have to give to keep an overgrown kid in Chicago alive?” I usually just tell people that I’m slowly being rebuilt into a girl from Iowa.
I’ve run 5Ks. I’ve leaped tall buildings and taken Kari’s friends along with me. I’ve danced at their weddings. I’ve done so many things I’d never dreamed of doing. But it’s not the 5Ks. It’s not leaping tall buildings. No, it’s not that at all. I can climb 100 floors every day of the week.
It’s the quiet moments that are so very special. It’s the soft realization of what’s been given to me. It’s the moments when I notice I’m taking a long, deep breath and I feel her smile surrounding me. It’s sitting across a table from my Laura. It’s briskly walking to work and taking a breath and feeling it fill my body. It usually hits me out of the blue, and I usually tremble and my eyes well up for just a moment. It’s been over 18 years, and it hits me every day.
Organ donation is so much more than simply saving a life. It’s about love, and about caring for people. It’s about realizing just how truly good people can be in this world. I know that you can imagine the pain and confusion and darkness facing Kari’s mom and dad and sister when Kari passed away. I think about that often.
I also know that you understand the strength and goodness and kindness they gathered when they stepped back for a moment, in the midst of that pain, and chose to help others. Chose to give a gift. Chose to keep another family from experiencing the pain and darkness they were facing. Chose to give them life. To give me and others life. Can you imagine a better way to help your fellow human beings, a better legacy to leave than to save a life, or two or three or seven, after you’ve left this world? I can’t.
Thank you for being here. I’m so sorry for your loss. Please know that there are so many of us out in the world, who do our best to honor your loved ones and you every single day with everything we do. We know that we are here because of your loved ones. Thank you for gathering the strength you gathered when you made the decisions you made.