Kari's Gift

Join my Kari's Klimbers Hustle Team!!!

Pledge Steve's Climb!!! 
Pledge someone on my Full Climb team, Kari's Klimbers!!!

Registration for the Hustle is Friday, November 1st at 8:00am sharp - In the past, it has sold out quickly - in as little as an hour!!!  2020 climb date is Sunday, February 23, 2020.

Thirteen...  I think that many of you know how special the number 13 is to me - it's on the sleeves of our team t-shirts every year.  13 was copied from a shirt that was given to me when I learned of Kari.  Kari wore number 13 on her Algona, Iowa, high school volleyball team.  2020 will be my 18th climb - and it is our team's 17th climb!!!  This will be the 17th time that my Kari's Klimbers team has taken the stairs 94 floors, 1,632 steps to the top of the building formerly known as the John Hancock Center for the Respiratory Health Association of Metropolitan Chicago.

I started this crazy thing 18 years ago on a lark...  I was volunteering at a health fair with Laura, telling people about organ donation -  and about Kari, who I had recently learned about...  She meant, and means everything to me.  RHAMC - Respiratory Health Association - had a booth nearby and, when our duties were finished, I stopped by to tell RHAMC about the beautiful girl who saved my life - about breathing with her amazing lungs - and to thank them for what they do for people like me who struggle, or have struggled for breath.

There were two beautiful chicks manning the booth.  If you imagine I had them in tears telling them about Kari, you imagine right.  They told me about their stairclimb up the John Hancock Building - that they had half-climb spots available - that I could climb 800 of the 1600 steps with them.  I told them I'd think about it...

I went home.  I took the stairs 10 floors to our condo...  I emailed them back and said, "I'm in!"  She told me she might be able to get me into the full climb - 1,632 steps - 94 floors.  I think I hesitated - but I thought this would be a neat way to honor Kari and her family and what they gave me, so I didn't hesitate long...  I climbed in my first Hustle up the Hancock in 2003.

The next year, 25 people joined with me on my Kari's Klimbers team.   50 joined me the year after - and almost 100 every year since!

My third year, Kari's friends and volleyball teammates started coming out!  For my 10th climb, Kari's mom, her sister, her Godmother and cousin also came out!  Can you imagine what it's like to have your life saved by someone so precious - then find yourself surrounded by her friends, volleyball teammates, her family, surrounded by people who loved her dearly - who help you honor and remember Kari???

And - if that isn't enough - years after receiving her gift, the drugs I take to keep that gift gradually destroyed my already compromised kidneys, leaving me wondering whether I was at the end of my road, much less whether I would climb again...  Kari wore #13 on her volleyball team.  #7 was first among several people who asked to be tested to give me a kidney...  In May, 2012, #7, Alex, gave me one of her kidneys.  Neither of us missed a single climb!!!   There is only one thing in the world that means more to me than Kari and Alex - I married her.  And, Kari and Alex have given me many, many more years to be with Laura.  (Here is a link to a story about what Alex did for me...)

Outside of my climbing activity - in transplant support groups I attend, on Facebook, through friends and acquaintances - I'm surrounded by people waiting for lungs, and waiting for kidneys, hearts and livers.  I find it can be incredibly motivating for them to meet a goof who climbs hundred-story buildings with his new lungs and with his donor's friends.  Many of them have eventually climbed with me!!!  I connect with people in transplant and organ procurement fields - and with donor families - who often only see the difficult, donation side of transplant...  I love helping them understand what they've done for someone...  Many of them end up climbing with me too!

I never did this to raise money - I did this to honor Kari...  But, we've raised well over $300,000.00 in the past 17 years to support the RHAMC and people with lung disease.  I do this for all of them...  I do this for people who struggle for air - for breath - like I once did...  But mostly I do this for Kari - for who she was, for the life she led - and for the life she missed.  I do this to honor the gift she's given me - which includes the gift of all of her friends...  I do this to remember her - and so others will never forget her.  I do this for Alex too, who supported me since her early years at the University of Northern Iowa, and eventually gave me one of her kidneys - and who now lets me tell others that I'm slowly being rebuilt into a girl from Iowa!

And I do this because of so many of you who have given me and my team so much support, and you motivate me to haul my three-sevenths-Iowa-girl-fanny up 1,632 steps every year!

If you've just visited here to get to the 2019 Hustle links, here they are: ( My full-climb team page, my personal page. ) (Keep reading if you've never been here before because the story's the most important part!)

I tried to quit more than once – her beautiful friends would not let me do that.  Now I know that I never really wanted to quit.  This is what I do.  This climb has allowed me to tell so many people, in so many ways, about Kari.  (And now, about Alex too…)

  

29,376 steps!!! When I come out of the stairwells at the top of the John Hancock Center on February 23rd,  that will be how many steps I’ve climbed at this event over the past 18 years!!  2020 will be the 18th time I’ve climbed in the Hustle up the Hancock with my team named, “Kari’s Klimbers”… The support I’ve received from friends, family, co-workers and the RHAMC over the years has blown my mind. Because of so many generous people, from the time we started in 2003, though this year – my team will have raised nearly $400,000 to support the Respiratory Health Association and help raise awareness and fund research towards curing lung disease.  And they’ve helped me raise awareness about organ donation – and tell the world about Kari, who saved my life over 19 years ago – whose lungs I breathe with.

Each year for the past 18 years, I’ve had around 100 very special people climbing on my team.  You can see my full climb roster ( here ).  My team is named “Kari’s Klimbers” in honor of the beautiful girl who saved my life.

Fifteen years ago, Kari’s friends Jenn and Kathryn Amendt and Christian Grandgenett, with their friends Devon and Brandon, came out from Iowa to climb with me – they’ve climbed with me several times… After that, several of Kari’s volleyball teammates joined me. These past years, #15, #12, #9, #8, #7, #4 and #2 – seven of Kari’s volleyball teammates; Tessa Van Oosbrey Simpson, Katie Omdahl Tzimas, Molly Rodemeyer, Wendy Divis Wagner, Alex Engelhardt, Kelly Page Schrauth and Samara Trenary and their cheerleader, Nicole "Gretchen" Geving, along with their volleyball coach and history teacher, have come out from Iowa, Minnesota, Kentucky, Wisconsin and Illinois to climb with me… 

I was obviously blowing a little smoke when I announced in 2010 that it was going to be my last climb – I said that I would be taking a few years off to do other things… The morning after that climb, having breakfast at Blackie’s, a half dozen girls walked in – the girls I mentioned above… Ten years before, they had played volleyball with her, and when she passed away, they created a little t-shirt in their friend’s memory. Kari’s Mom sent me one of those t-shirts nine years ago. After wearing it for so many years, it might have been looking a little funky because I wear it to every athletic event in which I participate… These beautiful girls had a duplicate shirt screened just for me, and they handed it to me with a couple of shirts from Kari’s hometown, Algona. And then one of them leaned in close and said, “We’re coming back next year. And YOU are climbing with us.” (Just in case I’d had any thoughts to the contrary…)


Apparently – this is what I do and there is not much I can do to stop it… It’s bigger than me. I do this climb to honor Kari. And, I do this to honor her Mom and Dad and her Sister and Brother-in-law, and her precious little niece and nephew, Eva Kari and Garret… And I do this to honor all of the precious friends who surrounded her and loved her, and who she loved… Can you imagine what I feel like when I’m surrounded by friends she loved???

In 2001 and 2004 Kari's friend Jenn wrote two beautiful poems you can see by following this link.

This is Kari… One night, a little over eighteen years ago she was having dinner with her family in Iowa. Kari was seventeen years old. She was intelligent, athletic, stubborn, outspoken… She had a smile that lit up the world. She was more beautiful than these pictures can ever show.


At dinner, Kari brought up the topic of organ donation saying without hesitation that she didn't understand why someone wouldn't want to help someone else when they were through with life here. A few weeks later, she and her sister Lys were swapping driver's licenses and checking out one another's pictures. Her Mom says Kari "jumped all over" Lys because she didn't have organ donor indicated on her license. A few weeks after that, her family had to make a tragic decision, but Kari had already helped them with that decision. At the most devastating moment in their lives, they reached out and saved mine. Kari brought her big smile into my life on April 8, 2000, when she and her family gave me both of her lungs.

My name is Steve Ferkau and I've lived for 59+ years with cystic fibrosis. CF patients usually develop very thick mucus in our lungs and elsewhere… In the lungs it harbors infections which create scar tissue, and gradually builds up to a point that our lungs cease to function properly.

I remember getting one collapsed lung fixed in my mid 20s, and I made a little mental decision that I was not going to get the next one fixed - I'd just ride it off into the sunset. I think it was fear more than pain that made me feel that way - a 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 the next one was also my prelude to transplant.

When I was listed for transplant in September 1997, my lung capacity was about 10% of a normal person's. I was on oxygen around the clock. I was on countless medications and required chest physical therapy. For four treatments totaling eight hours every single day for three years, someone was pounding on my chest - and pounding hard enough that we broke ribs 6 times in those three years.

While I waited - Every night while I was winding down from my last two-hour pounding… I sat in the dark in my bed for 30 or 40 minutes 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 pray that they were enjoying their 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 they had to finish.

I waited on the list for almost three years. I had four false alarms before that call on April 8th. Every time I got a call, I realized that someone had just passed away… And I knew some family was suffering… And I knew that they were also reaching out to try to save my life.

My first dinner at home after my transplant, I sat at the table with Laura, my mom and my sister. After dinner, and for little apparent reason, I started to cry. They all looked at me... they were a little concerned. When I explained to them why, they started crying too. It had just dawned on me that we didn't have to get up and go pound on my chest. (My first letter to Kari's family)

Nowadays, I open my eyes in the morning, stretch and take a breath- and I don't hear my chest gurgling! It's been over eighteen years, and I still walk around in complete awe of how this feels! The doc gave me permission to swing a golf club six weeks after my surgery. So I fit a few rounds into my schedule that first summer...I still stunk...and it was absolutely wonderful! After three years off, I was back at work 10 weeks after my surgery. There is a double flight of stairs from the trading floor to my offices that I hadn't climbed in 10 years. I didn't even go DOWN them in the last five years. 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.

I've been in contact with Kari's family for a almost sixteen years. In June, 2003 Laura and I drove out to Iowa to meet them. We met Kari's Mom and Dad, Lisa and Larry… her Sister and Brother-in-law Lys and Chuck… Kari's Grandma Willie and Kari's close friends Nick and Alex (who eventually gave me her kidney) and Abby and Kari's boyfriend Ryan. We also met Sandy, the beautiful recipient of Kari's heart. Meeting all of them was one of the most special times in my life. Hearing stories about Kari and seeing so very many pictures brought her so much closer to my heart. The weeks after meeting them felt more emotional for me because meeting them gave me a better understanding of the depth of their loss… And I also had an understanding of the love that surrounded Kari while she was here. The first letter I received from Kari's family painted a beautiful picture of Kari and her family. (Kari's family's first letter)

Kari was a leader on her high-school volleyball team. When Kari passed, her school retired her number, 13. The following year, which would have been Kari's senior year, her team dedicated their season to her. Her teammates created a beautiful t-shirt in her honor. They gave Kari's family a few of the shirts they created. The first year I knew of Kari and her family - On Kari's 19th birthday, her Mom sent me one of the shirts.

It's one of my most prized possessions in the world. I wear it when I do any athletic event that I would have never dreamed of doing before I received my beautiful lungs… And sometimes I wear it just to feel special.

I work at the Chicago Stock Exchange - the support I've received from the Exchange and the members and employees there has been just incredible! I've been there for over 40 years. They kept in close touch with me during the three years I was on medical leave and waiting for transplant… I received hundreds of notes from them when I was transplanted - And I came back to a hero's welcome when I returned. I was back working full time 10 weeks after transplant! Every year, several of them climb with me.

These past several years when I've climbed the Hancock in the "Hustle up the Hancock", the support I've received from so very many folks there has been incredible… They saw that I had so much fun that first year, and my teams have had so much fun in following years. This year I'll have an even larger team of special people climbing the Hancock with me to support the Respiratory Health Association. (Kari's Klimbers 2020 team page) Kari's given me a life I never dreamed possible. Organizations like the Respiratory Health Association and CF Foundation help me, and so many people like me, live longer better lives. Kari and her family are my heroes - Kari saved my life when I needed her most. But so many of these people, and people like those on my team, helped carry me to her door. They are my heroes too.

Lizzy Feistamel was one of my teammates who, like me, had cystic fibrosis. Like me, she had a double lung transplant… about two years after mine. In 2002 I saw her at the very end of her rope - but she always seemed to keep a smile, and a twinkle in her eyes. We talked and exchanged emails while she waited, and I tried to keep her spirits up and tell her how wonderful life is with good lungs - I tried to keep her spirits up, but her responses always seemed to lift my spirits more. She's also one of my heroes… Her recovery was as awesome as mine - And, like me, she was just wide-eyed with wonder at what breathing like a "normal" person actually feels like! In 2004 and 2005, Lizzy rocked the Hancock with me! My beautiful friend Lizzy passed away a month before our 2007 climb while waiting for a second lung transplant - she needed another hero in her life, but that did not happen... I loved Lizzy dearly and she will always be one of my heroes - her smile will be in my heart until my heart stops beating. I was honored to give part of Lizzy's eulogy at her memorial service (click here if you'd like to read it). Part of the reason I climb is to help people understand how special organ donation truly is - and it's easier to understand when you realize you might have saved a precious person like Liz. Again this year I'm climbing in honor of, and in memory of my beautiful friend Lizzy, as well as several other friends who are still waiting for lungs.

Through Lizzy, I met a wonderful band, the Sons of the Never Wrong. They wrote a song, Wind/Tree, and dedicated it to Lizzy, Lizzy's anonymous donor, me and Kari. Click this link to see more about the Sons and about Lizzy. Their website has a beautiful tribute to Lizzy.

I sometimes like to think that the thing that keeps this world lubricated, and moving forward, is when we reach out to help other people. We all have our jobs, and they're very important… They sustain us and our families and benefit others… But so many things and people tend to fall through the cracks…

In 2004, 26 people joined me climbing the Hancock for the American Lung Association. In 2005, 51 people joined me. Between 2006 through 2016, hundreds of people have joined my team. We have some fun… We raise some money for a good cause. The people climbing with me will likely never know the lives they've touched. Volunteerism is funny that way. In 2003, I raised $9,000. In 2004, my team helped me raise almost $19,000. Between 2003 and 2019 we raised nearly $400,000. In the grand scheme of things, that might not seem like enough to move mountains, but $400,000 might help a lot of kids with asthma breathe easier… Or help several people stop smoking… or help fund efforts to reduce power plant emissions. Without it, a few kids with asthma might struggle a few extra days - I understand what it feels like to struggle for breath… I'm alive today because of organizations like the Respiratory Health Association, the Cystic Fibrosis Foundation, Gift of Hope, Iowa Donor Network… And very important; I'm alive today because of people like the friends who climb with me and the people who so generously give to my team members. I'm so incredibly proud of all of them… I'm proud of the thousands of people involved. And to a kid who's having trouble breathing - The money they help raise WILL move a mountain for him or her.

The picture to the right is my favorite picture in the whole, wide world... I like my expression... I like the way I'm standing, strong and proud in front of the building we conquered... And I love the way I'm holding Kari's picture. This is how I imagine I'll look the moment I get to heaven, when I'll be tugging on the robe of the first angel I see and asking, "Have you seen her?!?! I need to find her... I need to give her a hug!"

There are nearly 120,000 people in the United States waiting for an organ. 6,000 people die every year because they did not receive an organ they desperately needed… Those numbers seem overwhelming when you're considering whether deciding to become an organ donor really matters that much. But, I have a little story I love to tell, and have told so many people - it's about the power of one person, and one decision...

One night along the East coast somewhere, there was an incredible storm… The storm washed up thousands of starfish onto the beach, where they lay in the morning sun. A young boy was out on the beach. He was furiously flinging starfish into the sea. A man strolling along saw the boy bustling… He walked up to the boy and asked him why he was doing it… He told the boy that there must be ten thousand starfish… He said that the boy could do this all day and never make a difference. The boy looked up at the man a little puzzled… He reached down and picked up a starfish and flung it out to sea with all his might… Then he looked up at the man and said, "I just made a difference in the life of THAT starfish!"

I was one of Kari's starfish.  And one of Alex's starfish.

Thanks for reading some of our story… I hope you're around and using your organs for a long time. But when you're through with life here, I hope you'll think about letting someone else borrow them. Sign your donor registry in Illinois or Iowa, or find your state's! And make sure you tell your family how you feel about organ donation. It's more important than signing your license!


I know a beautiful young girl from Iowa who knew how she felt and she told her family… I think about her every single day.

Contact Steve at: BreathinSteven@gmail.com

Here is a YouTube video produced by Donate Life Illinois in 2008 about Kari and me that I'm pretty proud of:

And here is another YouTube video created in 2012 by a young woman I met during one of my hospital stays - another video I'm also pretty proud of: