ClimbingForKari

Hustle 2012 Registration

2009-10-27T06:29:00.000-07:00

Registration begins at 8:00am CST on Tuesday, November 1, 2011!!! Please be aware that it will sell out within about 60 minutes – get there early!

To sign up on my team this year, you will need to start at www.LungChicago.org The link/button for regular Hustle registration will become active at the Respiratory Health Association's site at 8:00am sharp on Tuesday, November 1st… Initially, only my full climb team will be up – I will create a half climb team later in the morning on November 1st, if there are people who want the half climb.

A .pdf document with detailed instructions prepared by a friend at RHAMC are available HERE… (Please note, these were the instructions for the 2011 sign-up - They're still pretty accurate if you want to peruse them...)

You will be able to use your Username and Password from previous Hustle registrations, if you've been on my team before... If you don't remember what your Username and Password are - you may want to check out this link before November 1st. You can find your Username and/or reset your password by going to this link.

After clicking the button/link for regular Hustle registration available at www.LungChicago.org you will be directed to the Hustle registration page… Choose the “Full Climb” – on the page that follows, take the “Register to join an existing team” choice “Join a Team”… That will take you to a “Search for a Team” page – Enter “Kari” or some part of the “Kari’s Klimbers” team name and click “Search” – when “Kari’s Klimbers” pops up – click “Join this Team”… Then just follow the instructions to complete your registration.

The .pdf document noted above has examples of screen shots and step by step instructions you may find enlightening…

Please note: if you remember your username/password from your last registration - much of your data will be already be completed!

Registration has gone up $10 for the full climb this year – registration for the full climb is $140.00, the half-climb is $120.00.

If you have any questions, don't hesitate to email me at BreathinSteven@gmail.com

Back to Home Page, Climbing For Kari

Tower Up!!! Sears Tower Climb...

2009-10-06T07:51:00.000-07:00

Kari's Klimbers - Willis Tower (seriously, Sears Tower) Climb!!!

We’ve had Kari’s Klimbers teams climbing the Sears Tower (now, Willis Tower) for the past five years. This year the climb is for a Chicago charity – the Rehabilitation Institute of Chicago / RIC. I have a young friend who survived a stroke who was cared for and rehabilitated by RIC. She’s climbing with us in November… Information about the climb is available at www.SkyRiseChicago.org

The climb will be on Sunday, November 14th. Registration is $50 – however, there is a $100 pledge minimum. You can either sign-up and immediately pledge yourself $100 (total climb cost $150), or work to get pledges. My understanding is that if you do not have $100 in pledges at some point before the climb – you will not be permitted to climb.

Teams are limited to 10 people this year – I currently have one teams.

Kari’s Klimbers

Join us if you’re interested – click on the links above – on my page, click the “Join Steve's Team” link and follow the registration instructions. If you have any questions, do not hesitate to contact me at BreathinSteven@gmail.com

Go back to Climbing For Kari homepage...

Hustle Announce One

2009-10-02T12:45:00.000-07:00

This year's Hustle up the Hancock registration opens on

Monday, November 2 at 8:00am Sharp!!!

The last few years it has sold out in about a half hour -- so be there early!

I will create my team prior to November 2 by pledging to raise $1,000 -- and links to the registration page for my team will be here prior to November 2... However, please do not attempt to register before 8:00am November 2 or you will be pledging to raise $1,000!

Pledging: If you're thinking about pledging me or someone on my team, I love you already... Links to pledge should be available between late October and early November, 2009. You can also feel free to email me via the link below...

You can click here for more Hustle 2010 information.

Or, you can email me should you have any questions...

See you there!!! Love, Steve

Rose Parade Chronology

2009-01-21T17:52:00.000-08:00

I was invited to ride on the 2009 Donate Life Float in the Rose Parade!!! I was incredibly honored to have been invited by Gift of Hope in Illinois...

Before I went, and while I was there, I created several posts at our blog, Revive Hope, about my adventure...

Here are links to those posts in somewhat of a chronology:

August 1, 2008 -- Light bulb, light bulb, pearls, pearls...

About my invitation to ride the Donate Life Float in the Rose Parade...

October 1, 2008 -- Stars of Life Twinkle (by Melissa...)

Among other things, about float rider and heart recipient, Bonnie Lundy...

October 2, 2008 -- Stars of Life Twinkle Part II

Among other things, about float rider Steve Ferkau (me)...

November 19, 2008 -- Who are they? (by Melissa...)

Melissa's post about the floragraphs honoring donors, that will be riding the float with us...

December 11, 2008 -- Dedications...

About the Family Circle Garden and our roses dedicated to Chase, Chloe and Kari...

December 18, 2008 -- What game?

A video post, and a regular post, about my seeming lack of understanding about the entire Rose Parade situation...

December 24, 2008 -- Christmas in California (by Melissa...)

This is Melissa's thank you for Steve being her "Santa" by placing Chloe's roses in the Familiy Circle Garden...

December 26, 2008 -- Roses and Robbie...

Christina helps coordinate rose dedications in the Family Circle Garden - this is about her brother Robbie, who was an organ donor...

December 26, 2008 -- Rose Bowl Tickets!!!

Pictures and a video about getting my butt out of a sling...

December 28, 2008 -- We're in Pasadena!!!

Arriving in Pasadena -- pictures and videos about our agenda...

December 29, 2008 -- Donate Life Float - Rose Dedications...

Pictures, dedications, and videos about placing roses in the Family Circle Garden for Chase, Chloe and Kari...

December 29, 2008 -- Aspirations... And fun...

About beating life expectancies, and having fun...

December 31, 2008 -- Dear Steve... (by Melissa...)

A little thank you picture from Melissa for placing Chloe's roses...

December 31, 2008 -- Ready to roll... Donate Life Float

A few videos and a post about the "Stars of Life Gala" and our dress rehearsal for the float ride...

January 1, 2009 -- I'm on my way...

A brief post before I left for the Rose Parade...

January 1, 2009 -- A lot more than I ever imagined...

A brief post after the parade - our float won the "Queen's Trophy" and I was a little too tired and overwhelmed to post...

January 4, 2009 -- Donate Life Float - Judging...

A fun and late post about Judging on December 31st, with an emotional video of the judging and the lyrics of the song -- "There you'll be..."

January 6, 2009 -- Parade Day!!!

A fun and late post with pictures and videos from the float during the parade!

January 8, 2008 -- Taking a breather...

A non-post, with a lot of pictures of so many of the people I met and became friends with in the short week of the parade...

January 22, 2008 -- Iowans, and half-Iowans in Pasadena...

Some of the special Iowans I met in the time surrounding the parade -- and one who went home and blogged about us meeting...

Pledge Kari's Klimbers Teams or Members

2007-10-28T17:08:00.000-07:00

Listed below are members of my 94-floor full-climb and half-climb for the 2008 Hustle up the Hancock!! I have cystic fibrosis and received two beautiful lungs in April, 2000. My team is named after the precious girl who saved my life, Kari, and I do this to honor her, and her family.

Listed below are my friends. Some have climbed several times, others for the first time. Some of them bring life to people like me… Some of them work with people like me… Some of them just hang around people like me… Kari wore #13 on her Algona, Iowa high school volleyball team – some of them were Kari’s teammates…

Pledge full climb team here...

Full climb team members:

Ferkau, Steve Lung Health Champion / Captain

Gulotta, Anne - Donor Family Member Lung Health Champion

Alfred, Larry Full Climb

Allen, John - Double Lung Recipient Full Climb

Baghdassarian, Rima Full Climb

Bailey, Brooke Full Climb

Cahill, Joe Full Climb

Cardin, Felicia Full Climb

Cardin, Mike Full Climb

Cardin, Nick Full Climb

Carsello, Rose Full Climb

Caruso, Timothy Full Climb

Cunningham, Joan Full Climb

Deske, Tom Full Climb

Divis, Wendy - Iowa #8 Full Climb

Eugenio, Amanda Full Climb

Fellner, Reena Full Climb

Ferkau, Karen Full Climb

Fill, Grace Full Climb

Fox, Scott Full Climb

Garcia, Danny Full Climb

Gianfrancisco, Celeste Full Climb

Gianfrancisco, Paul Full Climb

Herdegan, Megan - Double Lung Recipient Full Climb

Hickey, Lauren Full Climb

Hinks, Catherine Full Climb

Huxel, Suzanne Full Climb

Ikens, Laura Full Climb

Ing, Maryann Full Climb

Ing, Troy Full Climb

Insalaco, Frank Full Climb

Johnson, Jennifer Full Climb

Klebacha, Keith Full Climb

Klein, Brett Full Climb

Kozlowski, Lowry Full Climb

Kubancek, Ruth Full Climb

Kubski, Katie Full Climb

Lang, Willa Full Climb

Malone, Brian Full Climb

Malone, Joanne Full Climb

McCarthy, Maureen Full Climb

McNicholas, Susan Full Climb

Miller, Cynthia Full Climb

Mirkovic, Erin Full Climb

Mirkovic, Kyle Full Climb

Mirkovic, Matthew Full Climb

Mirkovic, Srdjan Full Climb

Mrozek, Janet Full Climb

Omdahl, Katie - Iowa #12 Full Climb

Pagano, Peter Full Climb

Redenius, Alex - Iowa #7 Full Climb

Redenius, N. Full Climb

Rink, Paul Full Climb

Robbins, Gabe Full Climb

Ryan, Cheryl Full Climb

Schad, Dale Full Climb

Scheer, Kara Full Climb

Scheer, Kristen Full Climb

Schmidgall, Dave Full Climb

Schmookler, Matthew Full Climb

Schmookler, Stephen Full Climb

schultz, brian Full Climb

Sells, Daniel Full Climb

Sells, Greg Full Climb

Sells, Gregory P Full Climb

Sells, Stephanie Full Climb

Snyder, David Full Climb

Sofere, Joe Full Climb

Sofere, Sandy Full Climb

Sood, Carolyn Full Climb

Sweeney, Carly Full Climb

Tattas, Michael Full Climb

Trenary, Samara - Iowa #3 Full Climb

VanGetson, Cecilia Full Climb

Wagner, Beverly Full Climb

Wenger, Eve Full Climb

Pledge half climb team here...

Half climb team members:

Ferkau, Nancy Half Climb / Captain

Cardin, Mike Half Climb

Freedkin, Aaron Half Climb

Freedkin, Arie Half Climb

Manson, Julia Half Climb

Powell, Chris Half Climb

Schmidgall, Jillian Half Climb

Schmidgall, Lauren Half Climb

Schmidgall, Nancy Half Climb

Hustle Up the Hancock Registration

2007-10-19T11:01:00.000-07:00

Regular sign-up for the Hustle Up the Hancock starts at 8:00am on Monday, November 3rd – last year the 2,700+ spaces sold out in a few hours and there were problems with the registration site. If those problems have been addressed, it could sell out in less than 30 minutes.

If you sign up before 8:00am on Monday, November 3rd – you will be committing to raise $1,000 and will be considered a Lung Health Champion!!!

The registration fee this year is $110.00 for the full climb and $100.00 for the half climb. The registration website has changed - I was disappointed with some of the functionality last year, I'm not yet aware whether improvements have been made. If you have questions, email me after you register.

You can link to our full-climb team page here…

Click the "Join Our Team" button at the bottom...

Half climb link is not available yet...
Link to our half-climb team page here...
Click the Hustle Logo on the top left and click the "Register for the Half Climb" button

Click on the "Join Our Team" button at the bottom of the page and follow the instructions to complete your registration.

The full link to our team page is:

http://my.imisfriendraising.com/TeamPage.aspx?teamID=32143&LangPref=en-CA

Back to "Kari's Gift" page...

Sears - Go Vertical

2007-09-07T08:01:00.000-07:00

2008 !!!

“Go Vertical” supports the Damon Runyon Cancer Research Foundation. Registration is still $90 this year and the climb takes place on Sunday, November 9, 2008 (start time is determined the week or so before the climb, but it tends to be early…)

2008 will be the sixth annual race to the top of the Sears Tower, the tallest building in the USA and the longest urban stairclimb in the world! The Sears Tower is 103 floors, 2,109 steps – almost 500 more steps than the Hancock!

This is Kari’s Klimbers fifth year climbing the Sears Tower. We don’t have the same hoopla as the Hancock – we don’t focus on fundraising (although it’s a very good cause…) We don’t do t-shirts or anything else. We just show up and climb. Last year there were around 15 of us.

Please Note: Damon Runyon Cancer Research Foundation internalized their web registration this year. It is an incredible cost savings for them – but it is not as “slick” as the prior Convivo or Kintera vendors, but they have been working with me, and working on the site – if you note any problems, please contact me and I will address it with DRCRF.

You can register to join Kari’s Klimbers Sears climb by clicking here…

Click the "GO / Join our team" button on the right margin... Complete the data requested and click "next" and follow the instructions through the rest of the pages (there are quite a few pages to complete...)

If for some reason you don't show up on my roster -- please email me and I will make certain you are moved to my team!

Upon completion – make certain you verify your name is on the “Team Members” roster at the bottom of the page… You can go directly to the Kari’s Klimbers team page here… Make certain you verify you are on the Kari’s Klimbers team roster – I had initial problems with my first registrations.

Please note: There has been some trouble with accessing our team registration pages -- I've tried to re-establish the link to sign up for our team -- If you can't get there, you may be able to use the general regisration link -- or register by following links from the home page... If you use the general registration -- select "join an existing team" and search on the name "Kari" -- you'll be able to follow from that point...

Back to "Kari's Gift" page...

Kari's Klimbers Team Events Signup Page

2007-09-03T18:36:00.000-07:00

Links to three Chicago climbs are below. The "Hustle up the Hancock" has always been special to me, and has always been my focus. The Children's Memorial climb also has a warm place in my heart. I never really look to my team to fund-raise, though some of my team-mates have done a spectacular job of that! All three climbs are for wonderful causes. We prepare and participate in the Hustle with a little more intensity than the others. Just sign up and climb!!!

John Hancock Center / Hustle up the Hancock !!!

Join our Respiratory Health Association of Metropolitan Chicago - "Hustle up the Hancock" climb up the John Hancock Center!
94 Floors, 1,632 Steps! (Half Climb Team Available Too!)
2009 Climb: Sunday, February 22, 2009
Registration Starts 8:00am on Monday, November 3rd, 2008
Note: Last year the full climb sold out in 3 hours! Software improvements should allow it to sell out in less than an hour this year...

In 2003 the "Hustle" was my first stair-climb. In the four times we've climbed the Hancock since then, we've raised $160,000 for the Respiratory Health Association of Metropolitan Chicago. (Formerly the American Lung Association of Metropolitan Chicago)(Long story...) We were the highest fund-raising "family team" in 2005 and the highest team, period, in 2006. My team ROCKS! RHAMC has also helped with publicity, which allowed me to tell a lot of people about living with lousy lungs, organ donation, and about the beautiful girl who saved my life - which is so very special to me… The last few years, some of Kari's close friends from Iowa have come out to climb with me on my team. They are now my close friends.

Please Note: Do NOT sign up for the climb before 8:00 a.m. on November 3!!! If you do, you are committing to raising $1,000 for the American Lung Association as a Lung Health Champion.

Full climb registration on November 3rd is $110 with no further fundraising commitment.

Go to my 2009 Hustle Registration Information Link

Sears Tower / Go Vertical 2008 Sold Out...

Join our Damon Runyon Cancer Research Foundation climb up the Sears Tower!
103 Floors, 2,109 Steps! The World's Longest Urban Stairclimb!
2008 Climb: Sunday, November 9, 2008

What's not to love?!?! This is the tallest building stair-climb in the world. Almost 500 more stairs than the Hancock! This is for a good cause - How many of us don't have cancer in our families? And, with all of my immunosuppression, the likelihood of developing some type of cancer is much, much greater than most. (Yes, I'm helping myself here…)

My Sears Tower team page is here...

Instructions for joining my Sears team are here...

Aon Building /Step up for Kids - Childrens Memorial Hospital

Join our Children's Memorial - Kohl's "Step up for Kids" climb up the Aon Building! (Formerly the Standard Oil or Amoco Building)
80 Floors, 1,643 Steps!
2009 Climb: Sunday, January 25, 2009

On April 12, 1973, on the day of my 13th birthday, I was diagnosed with cystic fibrosis at Children's Memorial Hospital. They guided me and my family and gave us the discipline we needed to take care of me for the rest of my life. When I was diagnosed at 13, life expectancy of a CF patient was 14 years. Children's Memorial helped plant the seeds that allowed me to survive to four days before my 40th birthday. They gave me time to wait until Kari saved my life.

Join our 2009 Step Up For Kids Climb Team here

Information about stair climbs around the world:

Index of world stair-climbs:http://www.towerrunning.com/english/races.htm

Back to "Kari's Gift" page...

Revive Hope Hustle Posts

2007-09-01T18:03:00.000-07:00

I contribute to a blog named Revive Hope with two other very special people. I generally post on Thursdays. Below are several posts over the past year related to our Hustle climbs or my team, "Kari's Klimbers"...

As long as my heart is beating... February 21, 2008

Jenn and Ted and I often post newspaper articles here about people impacted by organ donation – sometimes we’re lucky enough to post an article where we have an intimate knowledge of the people involved in the story… This is one of those times.

This is about her...

And about him...

And about a beautiful story written about both of them, and her family and her friends and published in a paper in her home town...

Setting your sights on 1,600 steps... John Allen February 14, 2008

This is about a friend named John Allen who received two beautiful, new lungs like me - and how he came about being on my Kari's Klimbers team and Hustling up the Hancock with me...

Messengers of life... February 7, 2008

It all starts with donors, and with donor families… But sometimes donor families do not realize they are donor families until they meet one of these precious people… Someone has to tell them about the opportunity to save another life when they’ve just lost someone they love… Someone has to help them give a gift, if they choose to do so… And then another someone, sometimes on very short notice, has to rush out and collect that gift to deliver it to the life, or lives that family will save…

Climbing with Anne... January 31, 2008

This is about my friend Anne... She's a donor wife and an amazing lady and this will be her fourth time climbing with me...

And it's also a little about Lizzy...

#12, #8, #7, #3 and #2... January 24, 2008

This is a little post about Kari’s friends… It’s the first in a series about some of the special people who climb with me…

Leaping tall buildings... And hugs... October 25, 2007

This is a post about our building climbs and practice climbs – about meeting new people and telling them stories… And about why we climb…

My Hustle Teams... October 4, 2007

As you might imagine from the title, this is about my Hustle teams… It’s a letter to my past team members thanking them for climbing with me… And a note about being recognized, or not recognized… And there are links to about 100 pictures of the 2007 Hustle.

Happy Birthday, Jenn... June 28, 2007

OK, it’s not hugely Hustle related – but it is about meeting Kari’s friend Jenn and “running” with her, like she wanted to do at our first Hustle together… It has Jenn’s poem, “Talking to the Shadows” that I often use when I speak to let people see Kari through the eyes of one of her friends… Jenn is my friend now. We blog together at Revive Hope.

You just never know... Part II June 7, 2007

This is about my cousin Katie Kubski… My post contains an article Katie wrote for her school newspaper about organ donation, and about me and Kari… There is a little more about Katie and three other cousins in “You just never know…” below.

Stairs -- Just stairs... June 1, 2007

This is a post about climbing stairs with lousy, damaged cystic fibrosis lungs – climbing stairs with beautiful, new lungs… And climbing stairs with precious friends of the beautiful girl who gave me those beautiful, new lungs… You just have to see the picture in this post – it defines joy and triumph, and makes me smile.

You just never know... May 27, 2007

This is about my cousin Katie, and also about my cousins Lauren, Kara and Kristin… And it’s about not really being aware of the impact we have on one another’s lives… There is a beautiful, excited note from Katie wanting to join my team that touched my heart deeply…

My beautiful Lizzy... I'll miss you forever. May 17, 2007

And finally, this is about my friend Lizzy. Lizzy passed away in January, 2007. She had climbed with me three times and she was so very special to me. Like me, she had cystic fibrosis. And like me, she received two beautiful lungs from a very special person and family who she never knew… I will miss her forever…

Sons and Lizzy

2007-08-13T19:55:00.000-07:00

Wind/Tree

The stronger the wind is, the stronger the tree [chorus]

Have you seen it, have you touched the truth,
have you ridden that train or taken a longer look?
Have you walked that walk, have you taken the leap,
have you found a friend or have you lost him?

Did you take the blame, have you carried that weight,
did you hold somebody's hand when they needed you one day?
Did you swallow that pill, did you right that wrong,
have you taken that chance or is it long gone?

Did you love well, were you stupid sometimes,
do you keep up with the Jone's, do you apologize?
Keeping everything in order, did you make a little mess
'tween the loving and the grieving and the regrets?

Did you fall down, did you bury that pride,
Did you choke on lover's tears or run a hundred miles high?
Did the devil take you under, did redemption bring you release,
have you figured out the answer to the mystery?

Sue Demel

(Dedicated to our friends Liz--who plays the didgeridoo here, & Steve who struggled through life until an organ donor and donor family saved their lives and let them breathe with new lungs. And to Steve's donor, Kari Westberg, and Lizzy's anonymous donor, who they think about every day. Be someone's hero, consider organ donation!)

Sons of the Never Wrong are my favorite little band on the planet - I absolutely adore them... I was invited to a backyard concert which they were involved in... It was a "Got Well" party thrown for a precious young lady with cystic fibrosis who had received two beautiful lungs that allowed her to live, and "Got Well"... The Sons and Tom Dundee and Kat Eggleston threw a free concert in her honor... My wife and I fell in love with the Sons and now we follow them everywhere...

The precious young lady who received the two beautiful lungs is Lizzy - And I am Steve... We're the Liz and Steve in the dedication that appears in the liner notes of their "Nuthatch Suite" CD... I too have cystic fibrosis. The other person in the dedication was Kari Westberg - an incredibly intelligent, athletic and beautiful girl from Iowa. Kari brought her beautiful smile into my life when she passed away in April 2000, and she and her family gave me both of her lungs... Kari was 17 and had told her family how strongly she felt about organ donation twice during the month before she passed. On the CD, you can hear Lizzy's beautiful new lungs as she plays the didgeridoo in the beginning and background of Wind/Tree...I think the title of the song is particularly fitting for Lizzy and her didg - a didgeridoo is an instrument made from a hollowed tree. And Liz plays her didg with wind that was a gift.

I fell in love with "Wind/Tree" the moment I heard it... I told Sue Demel that the refrain and the song reminded me of Lizzy and me -- That sometimes when you face a strong wind in life, it makes you a stronger tree... Sue changed a line in the song to "run a hundred miles high" for me and Lizzy -- The past several years we've taken our beautiful new lungs 94 floors up the stairwells of the John Hancock Center for the American Lung Association and the "Hustle up the Hancock." And Lizzy and I were incredibly touched when Sue dedicated the song to us on the CD liner notes... And like Sue wrote -- I do think about Kari Westberg every day, and Lizzy thinks about her donor every day...

The Sons of the Never Wrong are awesome... I love their music -- They have so many fun, and heart felt songs... And if you have the chance, you really need to see them in person -- They're more fun than their music... And after you see them, their CDs become much more rich... You can see their schedule or order a CD via their website (below) or through Amazon.com.

More about Lizzy is at the bottom of my first webpage - You can also read a little about her, by her, at: (Click on the "Liz Feistamel" link!)

Gift of Hope -- Inspirations Tribute Book

Sons of the Never Wrong - http://www.sons.com/
Bruce Roper: guitar, vocals
Deborah Maris Lader: guitar, mandolin, vocals
Sue Demel: guitars, vocals, djembe drums

Link to Son's CDs at Amazon.com

For My Friend, Lizzy Feistamel - Nov 18, 1978 - Jan 31, 2007

2007-08-13T19:48:00.000-07:00

February 3, 2007

I found my friend Lizzy - or maybe we found each other around five years ago. I walked into our little lung transplant support group and spotted her - I think it's easy for us CFers to spot our kind. She was sitting there, sucking oxygen, with her entourage surrounding her - her Mom, Kate, Luke and Em and other friends. I don't remember all your names, but I'll never forget how much you love Lizzy... I sat down next to Lizzy that day and I proceeded to fall in love.

I let her know I'd been in her shoes - and I let her know how incredible this breathin' stuff really is. Her eyes and her whole face lit up as I explained a little about what was in store for her. Over the next several months, I did my best to keep her spirits up with emails we exchanged - but as sick as she was, her responses always seemed to boost my spirits higher than I ever imagined I could raise hers.

I remember she blew me off at the CF Great Strides walk on a beautiful Sunday - because she had been called for her lungs a few days before. I went anyways, and I met around 20 incredible people - her family and friends who were all so very excited, and shared that love and excitement with me. I heard so many stories that day, including how Mr. Joanis used to open the door and bark, "What do YOU want?!?" whenever Lizzy came to visit Em while she was waiting - but he also made sure there was a comfortable chair next to every staircase for her to rest... Being surrounded by people who love Lizzy so very much was incredible...

After that, I remember Lizzy talking about doing her first 5K - she started running much more quickly than I did after my transplant. And I remember excited emails about teaching neighbors to swim and hip-hop dance classes and other fun things - it was impossible not to sense her love of life.

We even leapt tall buildings together - she scampered 94 floors up the Hancock's stairs with me a few times

I don't know her as well as many of you have known her, and I haven't loved her as long as many of you have loved her - but like so many of you, Lizzy touched my soul in a very deep way... Some of us CF people tend to get under people's skin - I'm used to doing that to others - but I'm not always accustomed to having it done to me like Lizzy did... We may have been given a tough role in life, but so many of us are surrounded by such incredible love - I know Lizzy felt that way. Lizzy is one of my heroes - and Lizzy didn't become Lizzy by accident... She was surrounded by a wonderful and loving family, and incredible friends.

Thank you Jon, for letting Lizzy know love - this is what she wrote to me last March: "Things are going so well with my love. It is like an awakening. Truly a gift from the universe. The same kind of miraculous gift as receiving new lungs. Something you could have always hoped for but never have dreamed up how special it is to actually live it." No one should ever leave this planet without feeling love for and feeling loved by someone beyond our families That's what you did for Lizzy, Jon, and it means so much to so many of us...

Part of me is disappointed in the world for letting a precious young girl down - another part of me is thankful that she got five more beautiful years of life than she may have had - and she learned what it was like to really breathe... I wish she would have known who her donor was, I wish her donor family would have known Lizzy - she would have liked that, and they would have adored her.

Lizzy didn't deserve her cystic fibrosis, she didn't deserve all she went through then, and now... She deserved so much more than five years with beautiful, new lungs... Life is kinda puzzling sometimes and what happened to our Lizzy was not fair - but Life isn't fair or unfair... Life just is... Life just happens. We're all given a battle plan in life - and some of us seem to draw much more difficult assignments than others... But we all fight with the spirit we're given - I'll always admire your spirit, Lizzy...

A year after her beautiful new lungs, the Joanis', Tom Dundee, Kat Eggleston and the Sons of the Never Wrong, and so many other people threw Lizzy a "got well" party - I fell in love with the Sons through Lizzy. Sue Demel wrote a song that I told her reminded me of Lizzy and me. On their next CD, Lizzy played her didgeridoo on that song, and we were both incredibly honored that the Sons dedicated that song to Lizzy, me and the donors that saved our lives. The song starts:

The stronger the wind is, the stronger the tree
Have you seen it, have you touched the truth,
have you ridden that train or taken a longer look?
Have you walked that walk, have you taken that leap,
have you found a friend

or have you lost her?

We've all lost a beautiful and precious friend and daughter and sister and aunt and a love today. But Lizzy will be in our hearts forever.

I love you Lizzy.

Kari's Family's Letter

2007-08-13T19:28:00.000-07:00

October 27, 2001

Dear Steve and Laura Lung,

This letter is way over due, and for that we apologize. We think about you often and hope this letter finds you in good health and spirits. I truly believe that until we worked through some of our grief and came to terms with our new way of life we just couldn't write. We have all been on quite a roller coaster ride this past year and a half. One that seems to never end, yet one that seems to get a little easier with everyday. We have read and reread your letter a million times. It has given us great strength to move forward and has eased our pain tremendously. We are so grateful that you took the time to write us about your illness and miraculous recovery. A recovery we all expected based on the high quality organs you received!! (We may be a bit biased). Your letter meant everything to us as we struggled to understand the cards we'd been dealt.

We live in a small rural community in North Central Iowa with a population of about 6,000. We have lived here all our lives. It is a wonderful community to live and raise children in. We are a very tight knit family and always have been. This is one of the foundations holding us together and helping us through this ordeal.

We were a family of four, with two beautiful daughters! It was as if our life was so perfect, so much we had taken for granted but didn't realize it until it was too late. Kari our youngest daughter is your donor. She was seventeen and a junior in high school when she brought her big smile into your life. Kari was a bright, beautiful young lady who truly enjoyed everything life had to offer. One would have never guessed that anything was to go wrong. She was as healthy as a horse! Kari kept very active, in fact she had been out running with a friend the day before she passed away. She was attempting to stay in shape and train for the volleyball season to come in the fall. Volleyball was the love of her life and she was very good at it!! She was a very powerful middle hitter, we would say that she was the leading role on the team. Kari wore the number 13, which has now been retired and her jersey buried with her. She was 5'9 and weighed about 150. She had a short torso and long skinny legs that seemed never ending. By her junior year she had given up all other sports except volleyball, but remained extremely active in other activities. Kari played the French Horn in the band, sang in the choir, dabbled in mock trial, either played in the pit bands or performed in the school plays, and worked at a local pizza establishment. She was a member of the National Honor Society and took great pride in being ranked academically in the top 10% of her class. School came very easy to Kari.

She excelled in math and the sciences but wouldn't admit that she liked any of them. Although she was very busy the majority of the time Kari had a side to her that said, "I'm going to be a pile today!" She loved to sit, watch TV, and munch. Kari had been teaching herself to knit at the time of her death.

Kari was a very unique individual. She was very head strong, a trait she obtained from her dad. She seldom buckled to peer pressure and wasn't afraid to speak up for what she believed in. Kari had a definite ornery side to her! Oh how she loved to pick on me! At times she would drive me nuts, but now I long for her to pick on me again. She was very quick with verbal exchange and always got the last word in .

Kari had a lot of friends. She wasn't one to hangout with just one or two people, she spread her fun loving attitude among many. Which we saw to be true at her funeral as over 700 people were in attendance. Every pew in the church was full. They had people sitting in the basement watching the service on a television. One of the things we learned about Kari from all the people that came through the funeral home was that she always had a smile on her face, one they said they would never forget. We received over 125 flower arrangements for the funeral which left the church with a wonderful aroma. Kari would have been in awe to know that she had influenced so many peoples lives.

Kari had a special boyfriend that she spent most of her spare time with. They had been going together since the eighth grade and had become the very best of friends. They shared everything and helped keep each other on the right track. He has since stayed very close with our family and Alyssa has adopted him as her new little brother .

Kari and her older sister Alyssa had a beautiful relationship. They weren't like most ordinary siblings because they almost always got along. In fact I can't even remember them fighting. Alyssa always mothered Kari and was always there for her whenever the need arose. I remember Kari saying after Alyssa went to college that you just don't appreciate what you have until it's gone. She was so right!! Our girls were as different as night and day. Kari was more of a spur of the moment kind of girl. Where Alyssa is very organized and always plans things. We had always talked that if we could give a little of Alyssa's strong points to Kari and vice versa that we would have the perfect kids!

Kari died very suddenly Friday April 7, of a subarachnoid brain hemorrhage. It was the day before her junior prom. When the doctor came in to ask us if we would consider being organ donors we all new what Kari wanted. She felt very strongly about organ donation and had let us all know which made it very easy for us to donate. It was like she had the whole thing set up. About a month or so before she died we had had a conversation at the supper table on the topic of organ donation and she was very verbal about how she felt. Her main point was, "Why wouldn't you give someone else a chance to live if you couldn't anymore!!" It seemed so logical coming out of her mouth. I guess it took our seventeen year old daughter to teach us about giving selflessly to others. Kari had also talked to Alyssa about organ donation not too long before she passed away. They had been looking at each other's drivers licenses and Kari jumped all over Lys because she didn't have it marked on hers!! She was an incredible little girl but I'm sure I don't have to tell you that. You wouldn't believe how many people have come up to us since Kari's death to say that they have changed their drivers license and talked to their family about being an organ donor. You truly got a gift from Kari, and she would be so proud to know that she has done such a wonderful thing for you. Giving you back the quality of life you went so long without. We are so happy that you are taking good care of your new lungs and treasuring every new opportunity that comes knocking at your door. We hope that in this letter we have given Kari the justice she truly deserves. Wishing that you could have known her, I hope we have given you an idea of what she was like. We as a family would love to hear from you again. If you would like to email or talk on the phone, we are ready for any of them. Just let us know.

Again thank you so much for writing us and we hope you are feeling terrific and enjoying each and everyday. Take care and God be with you.

Sincerely yours,

Larry, Lisa, and Alyssa

Steve's Letter

2007-08-13T19:25:00.000-07:00

Sunday, September 10, 2000

Dear Donor Family,

My name is Steve. I live in Illinois, and have lived in the same general area all of my life. I've been married to my wife Laura for over 11 years. I truly believe I love her more than when we fell in love 14 years ago. We have no children, but we share 10 beautiful nieces & nephews all under 10 years old. Because of you, I celebrated my 40th birthday 4 days after my surgery. Because of you, I'll be able to share my nieces' & nephews' lives, go to little league games & gymnastic meets, and I won't worry about leaving my wife alone.

Prior to going on disability 3 years ago, I worked at one of the financial exchanges for 18 years. I had to leave 3 years ago to wait for my transplant. They have been incredibly supportive the entire 3 years I was waiting. They've welcomed me back with open arms. 10 weeks after my surgery, I returned to a hero's welcome! I've been lucky enough to love what I do almost as much as I love life!

My wife and I enjoy simple things like reading at the coffee shop around the corner, walking along the lakefront and parks, and though I'm not that good, I love to golf. We haven't been able to do any of those things since I started going downhill 4 years ago. Your gift to me changed all of that.

I've struggled with cystic fibrosis for 40 years. I've also had an incredibly supportive family, and a wonderful doctor for the last 27 years who has helped me live well beyond the average CF lifespan, but not without some bumps. I knew about 10 years ago a transplant was likely in my future. At that time my doctor told me the year I would wait would be the most difficult year of my life. Little did either of us know it would be over 2 1/2 years. But my wife, family and doctor rallied around me and really kept me going, medically and emotionally.

After complications from a collapsed lung in mid 1996, and a severe bleeding incident in May 1997, I went on supplemental oxygen 24 hours a day. I was forced to leave work in July 1997 and began testing to see if I qualified for a lung transplant. I was finally listed on September 8, 1997. By that time, I was getting chest physical therapy (pounding) to clear my secretions 4 times daily. Each treatment was 2 hours long for a total of 8 hours of pounding on my chest every day. My first treatment started at 5am, and the last one finished at 11pm. I was too wired to go to bed before midnight, and this continued for 2 years 7 months until my transplant. Luckily, we had a very dedicated professional therapist who drove 1 hour to get to our house at 5am every morning, 7 days a week for over 2 1/2 years! She did the 2 morning treatments, my wife did the 5pm treatment when she got home from work, and my younger sister drove over every night to do the 9pm treatment. I was on I.V. meds for several months, and inhaled meds, either of which took at least 2 hours daily to administer. The doctors required me to gain at least 15 pounds or they were going to put a feeding tube in my belly. I did NOT want that, so I was eating 6 or 7 small meals daily because it's hard to breathe with a full belly. I never slept more than 5 straight hours the entire 31 months I waited. My wife didn't get a lot more sleep. She got up with me, then napped for another hour before she went to work. The rest of the day, if she wasn't at work, she was helping me. For 2 years 7 months my wife and family's focus was keeping me alive and healthy enough for transplant.

When I was initially listed, we were told it would be about a one year wait. Many of the people already transplanted doubted it would be more than 9 months. Much of the first 6 months I really wasn't certain I would survive until transplant. After 6 months I stabilized a little, and I think about then I started believing I would make it the few months left until transplant. Little did we know I would wait 2 more years!

Around April 1998, my Dad was diagnosed with esophageal cancer. Except for a few silly things like gallstones, he had never been sick a day in his life. During surgery, they determined the cancer had spread. Over the next year we went through several ups and downs, thinking it was under control, then finding it somewhere else. In May 1999 my Dad passed away. He was truly a beautiful man. There were about 300 friends and family at both the wake and funeral. I had the honor of giving part of the eulogy. We asked my Dad's best friends to spread his ashes on his favorite golf course. A week later I got my first of 4 false alarm calls to the hospital for transplant. My Dad was looking forward to my transplant so very much, it seemed like he was with us. Though being sent home was a letdown, it was really moving to have the entire family together and so very excited for me. We had really been prepared for false alarms, over the next year or so we had 3 more. By the 4th one we almost assumed any call would most likely be false.

Something felt different to me on April 8, 2000. We were called at 2:00pm and told that the surgery may take place at 10:00pm. It was the longest wait we'd experienced. Laura was a little skeptical as we waited by the phone for a call telling us not to bother to come. We left for the hospital around 6pm. I really had a different feeling about this call. Both Laura and my families were with me in pre-op. Since no other patients were in pre-op, the nurse left all 10 of them visit with me until they rolled me into the operating room. Over the past year, I really thought I was going to be afraid before they put me under, but I felt strangely prepared for what was coming. I was a little apprehensive, but I also knew that if this didn't happen soon, my luck wasn't likely to hold out much longer, so I knew I was ready. After they prepped me and had all the I.V. lines in, before they put me under, I asked a nurse to please have someone go out during surgery and tell my wife I love her more than anything. I thought about my Dad, then they put me out.

My surgery was 5 1/2 hours. Someone relayed my message to Laura. By midnight they told my wife and family my first new lung was in. After completing the second lung, my surgeon told Laura the scarring on my lungs was the worst he'd seen in his 12 years of doing transplants.

It took them about 3 hours to get me stable after surgery, and they kept me pretty much unconscious for 12 hours (including the 3 unstable hours). I vaguely recall coming around a few times and fighting the ventilator, but they put me back out right away. I can remember not being able to breathe, but vividly realizing that I was alive and didn't have to breathe because it was being done for me. The next thing I really remember is all kinds of things being pulled away from my face and out of my nose, the fog clearing, and I looked up and saw Laura.

Laura had called her father and step-mother in South Carolina as soon as my surgery started. They hopped into their car and drove straight through to Chicago. You can imagine my surprise when I woke up and saw both of our families including their smiling faces! Aside from our families, a few close friends came to wait several hours with Laura while I was in surgery between 10pm and 4am! You can imagine how moved I was.

I woke up talking like I've never talked before. 3 hours after I woke up I had my first tray. Broth and Jell-O never tasted so good! The pain after surgery was MUCH less than I had anticipated. My recovery was incredible. The only reason I was in intensive care for 2 days was because they couldn't find a regular bed for me after 1 day!

My hospital stay went incredibly smoothly. I celebrated my 40th birthday 4 days after my transplant. My Mom brought a cake big enough for 40 people which we shared with anyone that came near my room. I stood up the day after my surgery, and was walking slowly around the room the next day. By the 4th day, Physical Therapy and Rehab was amazed at how well I was getting around. So was I! I went home 6 days after my surgery. Laura and I were walking around the courtyard of our building the next day. 3 days later we walked 1/2 mile to get coffee at Starbuck's. You can't even imagine the feelings I was experiencing. Just 10 days out of surgery and I was walking better than I have in 5 years! Less than 3 weeks out of surgery we were walking 2 or 3 miles daily. At 3 weeks I asked the doc if I could try to play tennis and ride a bike -- he said to go for it. Laura has been bothering me to get bikes for 10 years. I kept avoiding it because I just didn't have the stamina. At 3 weeks we bought bikes! We ride 1 or 2 miles every few days. It's truly incredible!

At 5 weeks out, I got permission to swing a golf club. We went to the driving range. My incision still hurt a bit, but I was able to hit half of a bucket out. I haven't swung a club in over 4 years. I found out I'm still as bad as I always was. And it's wonderful!

I've gotten quite a bit more emotional since my transplant. I suppose it's a combination of the excitement and the medications. I've been truly overwhelmed by the numerous friends and family members that have provided me constant support during my long wait, and shared in our joy when I was successfully transplanted. I'll find myself walking down the street, or in a group, and tears will begin streaming down my face... happy tears. And if someone asks, I tell them about you. I tell them how a family in Iowa lost a loved one, yet thought enough to give life to someone they never met. There's a special place in my heart and thoughts for you and your loved one. I think about you often, and I always will.

It's difficult for me to share the joy I feel and at the same time reconcile that with the loss I know you've suffered. I do know what you did was a purely selfless act. And an act of pure goodness. After 40 years of living with cystic fibrosis, I hope you can understand what you've done for me. You did not just save my life. You've given me a life I've never known; I've never, EVER been able to breathe this well. I don't know if I can do anything to ease the pain you feel, but I will always do my best to honor the gift you've given me, and the loved one you've lost. My wife, my family and I will never forget what you've done for me.

The week I returned to work I mentioned to a coworker and friend that my donor family was from Iowa. Later that day my friend sent me an email reminding me of that scene from the movie "Field of Dreams", where one character asked, "Is this Heaven?" And the other character replied, "No, this is Iowa." Because of your gift, this is how I'll always think of Iowa.

Sincerely,

Steve

Talking to the Shadows

2007-08-13T19:07:00.000-07:00

Talking to the Shadows

By Jennifer Amendt

Do you remember when we were little girls how you use to walk me home from an afternoon of fun only to have me turn around and walk you straight back home?
I will never forget how after hours of fun in the snow we would come back inside with our pink little noses and sopping socks to our steamy cups of hot chocolate, board games, and movies.

Our last run, or walk, is the fondest memory I have with you.
After our long walk we went back to my house and I put my prom dress on for you, it had just been finished.
I remember how we giggled because you made fun of how flat my chest looked in it.

We walked back to your house that night and I saw you in your prom dress.
A dress you would never wear.
Sometimes I think you knew that God was calling you home.
Could you hear him whispering your name?

Two days later I received a phone call saying, "come quickly" you were sick.
Two days later, you were in heaven, while our hearts were breaking apart down here.
Two days later, I felt alone.
Those days surrounding your sudden absence I will never forget.
The tears, the screams, the anger, the sorrow, and the loneliness are etched into my brain forever.

Almost five years later, some memories are starting to fade.
I don't talk to you as much.
I use to think about what you did to pass the time away.
Now a week or two will go by when I don't think about you at all.

Are you forgetting me like I am forgetting you?
I hardly remember your voice.
I could never forget that smile.
Yet, the memories still seem to fade, even if I don't want them to.

Can you see us strive?
Can you see us fail?
Do you see us smile?
Are you the one who helps pick us up when we fall?

In a few months I will run with the man who has your lungs.
I want to run with you one last time.
I know it will not be the same, but will you be there?
When I hear him huff and breathe on our run, will those be your breathes I hear?
When I am old and gray and it is time for my last breath, will you be there?
Will you be there holding my hand to walk me home where we belong?

From a Quiet Corner

2007-08-13T19:03:00.000-07:00

From a Quiet Corner

Jennifer Marie Amendt
In Loving Memory of Kari Westberg

A table is beautifully placed in a room
A white cloth delicately drapes across it

The lights are dimmed shyly low
And in the corner I do sit

I watch as their silhouettes move around
Carefully setting up chairs

I watch as her mother brings out an elaborate cake
And still no one notices I'm there

She places the cake down with care
As only a mother can do

I sit in silence
And I am in awe by how fast the time has flew

I watch as a tear trickles slowly down her cheek
She brushes it gently away

A yearning, I know is in her heart
The pain, I know is here to stay

She places each candle carefully atop the cake
Her hand trembling from a broken heart

Her head hung low from loneliness
Her heart aches from being apart

With a mothers love she places the last candle in its place
And tears glisten in her eyes

Then from a box she pulls out an angel
An angel with her head held high

Her wings and arms spread wide open
And her face has that same smile

Her eyes have a look of love in them
As if they are saying, "please mom, don't cry"

The mother kisses the angel and places it amongst the candles
The angel acquires this unbelievable shine

The mother leans towards the angel
And whispers softly, "sweetheart, you'll always be mine"

Her husband walks in and grabs her hand
His eyes seem to not be the same

He tries to be strong for his wife and his other daughter
But how can he be strong without his flame?

A young woman enters
With a similar smile to one I've known

A smile so familiar
A smile that has always shone

She walks over to her parents
Her heart singing that same sad song

Yet, something is missing
This picture is all wrong

The doors are thrown wide open
The guests begin to rush in

They hug and greet the family
And wait for the party to begin

They wait and wait for her
Hours go by and so do the days

She never shows up
The guests do not stay

As everyone leaves
I sit all quiet and still

I look back at all the years I had with her
All the memories and stories to tell

As her family walks out
They shut off all the lights

All that is left are the candles aglow
I stare at that beautiful angel and I duck out of sight

Jenn's Poetry

2007-08-13T18:57:00.000-07:00

Jenn's Poems

Kari's family and I began direct contact in early 2002. On what would have been Kari's 19th birthday, I received a "Happy 19th Birthday to your Lungs!" card. Folded in the card was a beautiful poem titled "From a Quiet Corner"… I've read and re-read this poem a hundred times. The poem had the author's email address on it, and I always wanted to contact Jennifer and tell her how beautiful I thought the poem is… But I wasn't sure how she might feel hearing from me, and I could never invade her privacy in that way.

In April 2004, I received an email from Kari's Mom saying Jenn wanted to get in touch with me… A few days later, a precious little email popped into my inbox. Though I already knew a good deal about her, Jenn introduced herself and explained her relationship with Kari. She told me they were close friends, neighbors and running partners - And that they had been running, or really walking and goofing around a few days before Kari passed. She said they had gone to one another's houses and saw each other's prom dresses… Kari never got to wear hers.

Jenn said she couldn't run for a long time after Kari passed because it brought back too many memories… Her family moved from Algona not long after. She said that she was back to running a few years later - And "talked" to Kari on her runs to keep her from slowing. Her next paragraph began, "The reason I'm getting in contact with you is because I want to run with Kari again!" She went on to tell me that she and several friends planned to drive out from Iowa and climb on my "Kari's Klimbers" team… If you know me, you can probably imagine how that made me feel!

Several months after we began emailing one another, Jenn read her poem, "In a Quiet Corner" to her church group. They coaxed her to write another poem and Jenn wrote "Talking to the Shadows."

I have the opportunity to speak to various groups about organ donation, and about Kari. Recently, I've started my presentations with Jenn's poem, "Talking to the Shadows". Both poems show me how much Kari loved her friends, and how very much they loved her.

From a Quiet Corner - By Jennifer Amendt ©2001

Talking to the Shadows - By Jennifer Amendt ©2004

Website Pictures

2007-08-09T14:03:00.000-07:00