Revive Hope

Reasons...

Last Tuesday I got to bat clean-up at Gift of Hope’s Lifesaving Partners Awards Ceremony… It’s Gift of Hope’s annual event to honor people who work closely with Gift of Hope to promote and accommodate organ donation – it can be people in government, media folks, hospital folks from Emergency Room, the ICU, ethics department and other areas – people who help grease the wheels, spread awareness, educate others, and help make organ donation happen… It’s one of my favorite gigs because I am an ultimate beneficiary of the work they do – and I get to thank them for what they do… And I get to show them how thankful I am for the gift I was given – for the girl and family who gave me this gift – and for the people who helped get this gift from her to me…

I borrowed a little prose from my friend in New Jersey who wrote the most beautiful thing I’ve ever read about Kari and about me on her blog titled "donorcycle", in a post titled Legacy. I wrapped my talk around a few paragraphs from her post… Here is what I said.... (click link to Adobe .pdf file…)

Now – this video has nothing to do with what I just wrote about – but maybe it has everything to do with what I just wrote about (the embedded video doesn't always seem to work, you can try this link...):

View more videos at: http://nbcchicago.com.

So – last week our friend Ruth told us about a news story she saw on TV (the above video) about a young girl with cystic fibrosis who is waiting for a double-lung transplant at Loyola, where I was transplanted.  This young girl has also has been playing the lead in her high school production of “Hairspray” – singing and dancing with 30% lung capacity… She asked me if I knew her – I thought I recognized the name – I know I’ve met her family, but I don’t think I’ve met her…

The next day, I received a Google Alert for “lung transplant” on a story about Julie D’Agostino – the girl Ruth had seen on TV… I remember that I had met her parents at some cystic fibrosis fundraising function…

That day, I found her on Facebook and I sent her a friend request, along with a little note (OK, long note – I don’t do “little”…) I told her that our friend Ruth had seen her on TV, and that I had read a few articles about her. I let her know I was proud of her… I tried to tell her a little about what living and breathing with beautiful, new lungs is like – I told her to keep her eye on the prize and to get through this – and that I hoped that her journey is as amazing as mine has been… I got a beautiful note back from her thanking me for inspiring her and telling me that my words would stay with her forever…

That night, my Mom and my Sisters went to a play – my adopted niece, Lauren, was performing in the play… After the play, Lauren insisted on bringing my family back to meet the main character – who has cystic fibrosis and is waiting for new lungs and is “amazing” – and they introduced her to Julie D’Agostino… And Julie and her family proceeded to tell my family about the note Julie received from me just that day!

On Easter Sunday, Lauren showed me a number of YouTube videos of Julie’s performances – and Lauren was right – Julie is amazing… The thought that she’s up there, belting out these songs – dancing and strutting around the stage – with 30% lung capacity, I find rather awe-inspiring… Check out this video of Julie singing “I can hear the bells”:

Julie is listed and waiting for two lungs – without them, she simply won’t live that long… With all she does with the diseased lungs she’s living with now – I can’t even imagine what she’ll be able to accomplish with a beautiful gift from a special person and family… I tell people about Kari and about the beautiful lungs she and her family gave me – I do that because I want the whole world to know about her, and I want them to feel her smile like I do every day… But I also do that because of people like Julie – so that people understand that there are others out in the world with a desperate need – and when they commit to being an organ donor, at some point, hopefully in the distant future, they will help someone as precious as Julie – and someone like Julie will think of them the way I think of Kari…

I guess that there are a lot of reasons why I tell people about Kari – I never met her, but through her family and friends sometimes I feel as if I know her a little bit – and I don’t want anyone to ever forget her. But I also tell people about her to help people who take some responsibility in accommodating gifts like those Kari gave me and others, understand how precious those gifts are, how precious the giver was, and how special what they do truly is…

 *Chicago Sun-Times photo by Jean Lechat


And then there are people like Julie D’Agostino, waiting for someone like Kari – and waiting for all of these people to leap into action to help deliver a gift to her from a person or family willing to donate… There are over 110,000 people like Julie waiting… I tell people about Kari so that they understand what organ donors do for their fellow human beings. Be someone’s hero. Register as an organ donor on your state’s donor registry…

This one time, she was on time... Jordyn Burkart

Out of the blue, last October, I received a little email from the Library Media Specialist at Denmark High School, Denise, in Denmark, Wisconsin… She described a project where they choose a book – and several teachers read a chapter or two and discuss it with their classes. Then, after the readings, they try to have someone related to the book or subject come out and talk about the book with their students… She told me that this year they’d chosen Reg Green’s, “The Gift that Heals.”

Pretty much at that moment, I knew that I was being offered the chance to go tell several hundred high school students about Kari, and about the gift she and her family have given me. Chapter 19 in Reg’s book is about Kari and her family, and me and Kari’s heart recipient, Sandy…

Then, Denise lays another little surprise on me. After reviewing the book and finding a rather-biased customer review I had posted on Amazon.com and discovering that I lived in Chicago – then reading a little more about me and Kari… She knew that one of their teachers in Denmark used to live in Kari’s hometown of Algona, Iowa – and she found out that Kari was one of his students… And – that he’s married to Kari’s volleyball coach.

Bill and Della are the teacher and coach – I actually got to meet them a few weeks early. Della teaches and coaches at different high school near Denmark. I connected with them via email and on Facebook shortly after my exchange with Denise. And both of them joined my Kari’s Klimbers team and Hustled up the Hancock with me at the end of February! It was doubly neat for me – I’ve climbed with Kari’s friends and her volleyball teammates for six years now – and this time their teacher and coach came along!

So… This past Tuesday I got to speak at Denmark High School. They all read the chapter about Kari and me at the end of last week – and then they told the students that I would be out to speak to them… We saved the part about Kari being Bill’s student as a surprise – along with Bill & Della’s Hustle journey too… I started by reading Jenn’s poem – then I let them know how I feel about Kari and her family, and her friends – and what it’s like to breathe with her beautiful lungs after struggling with my diseased lungs all of my life… Judging by how many glistening eyes I saw looking back at me – I think my message connected…

Then, we had a fun treat – not only was it a surprise to the students and staff that Bill & Della taught and coached Kari – but we got to show them their adventure coming out to climb with us! Bill videoed their climb and Denise edited it into a fun 10-minute presentation… I’ve uploaded it to YouTube – it lost a little quality, but it’s still pretty awesome!

I also had the honor of sharing the podium with Erin Davisson. She is an anchor and reporter at WFRV-TV in Green Bay, Wisconsin – and she is also a 20-year liver transplant survivor. She told the students about her journey, and many of the things she does to spread awareness about organ donation – and she told them about the importance of organ donation. We also managed to make the 5pm news in Green Bay!

At the end of our program, we heard from a Dad… Dennis Burkart. He lost his beautiful, 17-year-old daughter, Jordyn, only six weeks earlier. Jordyn died tragically in an auto accident – and Jordyn became a donor. Jordyn was from a nearby high school – and the staff at Denmark High School learned that she was a donor after she passed away… They reached out to Dennis just to ask if they could mention that Jordyn was a donor in our program – but Dennis told them that he wanted to participate, and he wanted tell them about Jordyn. Her Dad told all of us about how special Jordyn was…

As he spoke, Dennis explained to us that he was very angry when he was approached by a nurse to ask him if Jordyn could be an organ donor – that at a painful time like that, how could someone make that request? But his 23-year-old daughter, Julie, soon told him that Jordyn had spoken to her about organ donation – and that Jordyn wanted to be an organ donor. She had never spoken to her parents about it – but apparently Jordyn and Julie had discussed organ donation… Later, the nurse returned with a document showing that Jordyn had registered her desire to be an organ donor…

Dennis explained to us how Jordyn was rarely “on time” for things… He chuckled when he remembered and told us about her being regularly late for a lot of life’s events and tasks – but that sometime shortly after her 16th birthday, she didn’t tell anyone, but Jordyn registered to be an organ donor… This one time, he said, Jordyn was “on time”… People are living better lives because of Jordyn. Dennis made it easy to see that her Dad is proud of her…

I had an amazing time in Denmark – the students were all kind and attentive… And like I always think about Kari and her family, and so many other donors and families I’ve met on this journey – I will always remember the smile of another 17-year-old girl, and meeting her Dad…

 

Jordyn Lee Burkart

 

A few of my favorite things... Buck's lithopanes.

OK, one of my favorite things in particular…

I’ve been meaning to post about this for a while – about few little works of art made for me by someone very special to me…

I posted about the Tri-for-life team here and here and here. They lost their youngest brother, Chase, six years ago. The first time I met them, I also met their dad, Buck – he’s on the far left in the picture above… Buck is a big man – but I think he also has a heart ten times too big for his body. It’s not a medical condition… It’s filled with extra helpings of pain, but also with strength and compassion, and love… He misses his son, but he also sees the gifts that Chase gave – and through that, the gifts that others gave. He and his boys will help others understand how precious and important those gifts are and, when they have the opportunity, that giving these gifts should be the natural option…

A short while after we met, I got an email from Buck asking for a high quality digital image of my favorite picture of Kari. I told him I have two favorites – either one I love – and they were scans of wallet-size prints, but they were decent scans… I told him he could use whichever one was better for his purpose… This was one of the pictures I sent him…

I knew that Buck was into woodworking and other crafts – I didn’t know what he planned on doing, but I figured it might be something neat… A few weeks later, he sent me a link to his website and explained what he was doing. He explained that he would be turning them into “lithopanes”… And that he would make one of each photo I sent…

I saw examples on his website – and they looked beautiful… Suddenly, I was in a dilemma – I knew that if Buck made lithopanes of Kari, I would need to offer one or both of them to Kari’s Mom & Dad. Not because they would expect it – but because I couldn’t possibly hold onto a gift like this without offering it to her family… So, in my tiny mind I was already planning to send them both to Kari’s Mom & Dad and telling them to pick their favorite, and send the other back – or, if they wanted, they could keep both of them…

Buck knew how I’d operate… When I opened the package from him, there were two sets of each – with a note that one set was for Kari’s Mom & Dad… Buck included a beautiful letter to Kari’s Mom & Dad, telling them about Chase, and that he watched me breathe into Kari’s lungs and that he could tell my heart screams Kari’s name with every beat… When I saw the two sets of lithopanes, I cried… His boys told me that Buck knew what he was doing – that Buck knew that I would send them to her family if I only got one set…

Kari’s lithopanes are in a window in our living room that gets the most light, and it’s where I do all of my medical checks when I wake up every morning – I see them every morning – I see the light shining through them and I think of her and her family, and I think of Chase and Buck and their family too… The lithopane picture above is lit from the front and shows the relief etching. The picture to the left is what it looks like when lit from behind. They can be hung in a window, like mine – or framed in a light-box.

One of them played a part in my little video below. At around the 1:29 mark, you can see me holding Kari’s lithopane – then raising it to the sun:

The pictures – even the video – do not do these lithopanes justice… You need to hold them, and touch them – and hold them up to the sun… I take them with me, from time to time, when I’m out and about speaking or doing something for organ donation – I love handing my lithopane to someone and see them look at the relief image. Then I tell them to hold it up to the light… You need to see their eyes when they first see the image – it’s magical… To see the rough, relief image turn into a photographic image in sunlight, or bright light can be breathtaking. Maybe, I also see the love that went into making them…

In his retirement, Buck has taking this up as an avocation – because he loves it, and it’s meaningful to him… He has a website where he sells his woodworking plans, finished works and lithopanes at www.familytraditionwwp.com. You can link directly to his site offering lithopanes here… These are beautiful, little works of art whether created of someone you love, or in memory of someone you love. I think he prices them very reasonably – information on ordering lithopanes and contact information are available on his website… Don’t hesitate to contact him (or me) for any other information!  I know where he lives...  I can pass on any questions.

This is Buck's youngest boy, Chase.  I have to believe that Chase is up there looking down, proud of his Dad.  I mentioned above, Buck has a heart far bigger than his body needs – which is probably a good thing, because a little of that heart goes into each lithopane he creates…

Because someone out there needs something...

I got a MySpace friend request from a paramedic the other day… After I approved his friend request, I told him what I thought about paramedics…

I told him about buggy #41 – my buggy – Chicago Fire Department ambulance #41. I told him that 11 years ago, right around this time of year, was pretty much the beginning of the chain of events that lead to what I have now.

It was around 10pm and I was doing my chest physical therapy – pounding and coughing – I felt a pop, then some gurgling. Laura looked at me and asked me if I was OK – I shook my head “no”… She asked me if she should call 911 – I shook my head “yes”… That’s was about all I remember until I saw two Chicago Fire Department paramedics hovering over me holding an oxygen mask to my face…

I’d had a bad hemoptysis, a bleed in my lungs, and coughed up about a cup of blood onto the carpet. I can’t imagine what Laura felt like – she said I looked like a Smurf as she held me up in a sitting position and hollered at me to stay alive… She spoke with the 911 dispatch operator and followed her instructions until the paramedics arrived…

That was then. Now – I can see the fire station where buggy #41 is parked from my window in my office. Whenever I see it pass on the street, I stand a little taller – I almost want to salute. I guess I usually do in my heart…

The paramedic from MySpace was just another reminder to me of all the heroes in our lives… He worked as a paramedic in Maryland, then in the Chicago area. Then he took an interest in organ donation and became an organ procurement coordinator for Wisconsin Donor Network. Now he’s a paramedic again, but he’s taken it to the skies – he works as a flight paramedic in Indiana.

Everyone who knows anything about me knows that Kari is my hero – she and her family are my heroes… I think of them throughout the day, every day I breathe… And I think of her precious friends too… But I think of these people as well – our paramedics, flight crews, OPO people, procurement nurses, medical professionals – they invest their effort and their precious time – and often enough they put their lives on the line for us…

I “met” this paramedic because he was visiting Bill Serra’s MySpace tribute page. He stumbled across the picture of me holding Kari’s picture. He’s from the Chicago area and recognized the Hancock in the background of our picture.

The last case he did as a procurement coordinator in Wisconsin was on June 4, 2007. It involved procuring a heart, liver, kidneys and… lungs. The lungs were allocated to University of Michigan… by him.  He rotated off after working 24 hours, and went home and went to sleep… His wife woke him a few hours later and told him there had been a plane crash in Lake Michigan and she thought it was a medical team…

Like my buddy Scott at IamAreYou did yesterday – I’d like to take a moment to remember six people who lost their lives a year ago yesterday, while trying to save another life… I posted about them a year ago. I’d like to honor and remember them… They are Dr. David Ashburn, Richard Chenault II, Rick Lapensee, Dr. Martin Spoor, Dennis Hoyes & Bill Serra. You can see their bios on the Umich site here…

And I’d like to honor the people who show up on a phone call, no matter the time of day or night, sometimes pulling 24-hour shifts – because someone out there needs something…

The most precious gift... Nicole

So… It started last December – December 2nd to be exact. Out of the blue I got an email with a last name I thought I recognized… I did.

Dear Steve,

While I do not know you and nor you I, I am feeling compelled to write this e-mail to you. I got online again tonight because I felt the need to read your story, that I have read before and know oh so well.

First, I should probably tell you who I am. My name is Nicole. You may be familiar with my last name due to the fact that I am Ryan (Kari's boyfriend's) youngest sister. I am 16 years old, and am a sophomore at Algona High School. I was in the second grade when Kari died almost 8 years ago. I was completely devastated when I heard the news, because Kari was my role model. I wanted nothing more than to be EXACTLY like Kari when I grew up. I even cut my hair to look like hers when I was younger! And, whenever Ryan had her over, I wanted her to hang out with me, not him!! :)

Lately, I have been thinking about her more often than I had been the last few years. It is hard for me to think that I am almost the same age as her when she passed away. I can only imagine what it will be like for me when I get to go to my Junior prom.

I am so thankful that she was such a strong individual and knew what she wanted. And, am SO glad that she was able to help people like you to live! She was an amazing person.

So, now for the main reason I am e-mailing you. I am a member of the speech team at my school, and this year for individual speech one of my events is called Original Oratory. In this event you are supposed to write a maximum 8 minute speech about and inspirational topic and it can as well be persuasive. When my teacher, Miss L, was giving me ideas of what people had done in the past for the topic of their speech they were things such as cancer treatment, bullying, etc..But, I knew after her first suggestion what I wanted to do. I want to write my speech on Organ Donation, to use the inspirational story of an amazing girl and to try and persuade how important organ donation can be. (Kari is the reason that I decided to be an organ donor.)

Nicole asked me for some websites and sources of information about organ donation, and any information I might be able to provide to help her in building her persuasive speech… The next day, she told me that she was probably jumping the gun – that her contest for Individual Speech isn’t until March, but she was just so excited. She said she wanted it to be so good, for Kari, and for me. She told me her main goal was to reach All-State – the highest honor she can get. Her teacher told her that was very possible if she had a very good speech.

In subsequent emails, Nicole told me more about her relationship with Kari… She let me know a little more about the beautiful girl I think about every day. Nicole also helped me understand how precious the friends who surrounded her truly are…

On February 11th, Nicole sent me the first draft of her speech. On Saturday, February 23, Nicole participated in districts at Bishop Garrigan High School in Algona – the town where Kari was born and raised. She performed in front of one judge and received a “Division 1” (the highest rating) and advanced to the State contest on March 8th.

I got a beautiful little email from Nicole on Kari’s birthday – Friday, March 7th. She let me know that she went to “see” Kari, and leave her a little gift. She saw the flowers and note I left. And, she left her speech in a Ziploc baggie anchored down by a cute little Easter angel figurine.

Here is Nicole's speech... (Adobe Acrobat Required)

Her email to me on the evening of the 8th started:

So, to put it bluntly...I kicked butt. I came out of that performance feeling the best ever!! I nailed it. And that was before I even got my rating.

On Saturday, March 8th at 3:18pm, Nicole participated in State at Manson NW Webster High School. She performed before three judges and received a “Division 1” from each of the three judges and was nominated to perform at the All-State Festival at University of Northern Iowa on March 31st. One of the judges commented on her ballot that she hoped Nicole can share her speech more widely. And her friend CJ told her that after he performed, he was checking his license to make sure he's a registered organ donor.

On December 3rd, Nicole told me her goal was to reach All-State. She made her goal. I know Kari is upstairs looking down on her precious young friend with a beaming smile – I know Kari is very proud of Nicole. I am too.

Setting your sights on 1,600 steps… John Allen

On February 22nd, 2004, Kari and I shared the front page of the Chicago Sun-Times. In a story written by Jim Ritter titled “Climbing High with Kari’s Gift”… The story made the cover of the paper that Sunday – and there was a beautiful article inside that took up two full pages with pictures and excerpts from the first anonymous letters I exchanged with Kari’s family. Mr. Ritter even interviewed Kari’s family for the story…

John Allen was waiting for lungs. Waiting for lungs is often a tedious, depressing and scary pastime… And the fact that you aren’t breathing too well doesn’t help matters…

For some reason that none of us will ever know, on Sunday, February 22nd, 2004, the Chicago Sun-Times was delivered to John’s doorstep… He didn’t get the newspaper delivered – and he doesn’t know how or why it was delivered – but he looked down and saw the front page story about a guy who received lungs like he was waiting for… A guy who received lungs from a beautiful girl – and now he leaps tall buildings with her lungs…

John pored through the story and he made a little decision. He decided that one day he was going to climb the Hancock with that guy…

A month or so later – at a lung transplant support group meeting at Loyola University Medical Center – I was sitting at the table with everyone else and John walked in toting his oxygen. He lit up like a Christmas tree and said, “I know you!!! I saw you in the paper!!!” I always kinda love the celebrity feeling – Laura always says I’m a legend in my own mind – John told me about getting the Sun-Times mysteriously delivered and that he was going to climb with me someday…

Here is a picture of John at a Loyola candle-lighting ceremony, lighting a candle to honor the his anonymous donor. John was transplanted in early autumn of 2004.

Months later, on Sunday, February 27, 2005 – John climbed with me. On Sunday, February 24, 2008 – he will climb with me for the fourth time… I just think it’s cool that someone struggling like John was struggling, could set his sights on trudging up 1,600 steps – and then do it with me less than a year later… This will be John’s fourth climb with me. I’m proud of him and honored that he climbs with me…

Someone very special to me already pledged John to honor him, and in remembrance of another recipient special to both of us – You can link to John’s Hustle page here…

You can read about why we climb at www.ClimbingForKari.org

Small World Part II - Harvey Mysel

This is Part II of a series of hopefully-millions! (But I'm not great with Roman numerals when they get that high...)

Last May, I had the honor of speaking at a “Celebration of Life” sponsored by the National Kidney Foundation of Illinois. It was the first of what is intended to be an annual event honoring living organ donors and their recipients.

I met a pretty neat guy and his wife on the way in – Harvey and Amy Mysel. Harvey was in kidney failure and six months ago, Amy gave him one of hers. After my little talk (download draft of presentation ) Harvey approached me and told me about an organization he was forming: the Living Kidney Donors Network.

Harvey’s intent is for this organization to provide free services to individuals who are in need of a kidney transplant – the primary goal being to educate and train individuals so they can successfully find a living kidney donor. It will not be a “matching service” – rather, they will educate people in need (and provide information for people interested in being a donor) so they can overcome the myths and misconceptions when they speak to a potential living donor. And, train people so they can effectively communicate their message – providing them with networking skills so they can convey their message to a larger number of people…

At the time of this posting, there are 72,448 people in the United States waiting for a kidney. For every living donation Harvey can influence, he’s helping save at least two lives! The recipient of the living donation, naturally – but also, the kidney that may have been destined to that recipient can now be directed to someone else on the list.

I “bumped into” Harvey again through a newspaper article. Harvey is training with his two sons to take Amy’s kidney on a triathlon! His sons, Daniel and David, coaxed Harvey (center) into doing the triathlon – and they are doing it to help create awareness about kidney donation and Harvey’s foundation.

Ted’s inspiration for creating the My Angel Foundation and this Revive Hope blog is to honor his Mom, who gave him her kidney 11 months ago. Similarly, Harvey’s inspiration for creating the Living Kidney Donors Network is his wife, Amy. Isn’t it neat when a gift from one special person gives on to so many others?!?!

Harvey and Ted have received very special gifts from very special people – and they’re using those gifts to help others.

The Living Kidney Donors Network website will be at www.livingkidneydonorsnetwork.org However, it’s not quite ready yet… Harvey can be reached at [email protected]

And I’d like to tip my hat to Pioneer Press, a member of the Sun-Times News Group. In my experience, they provide good coverage of organ donation and the surrounding issues. (Including one about me and Kari!)

Small World Part I - Jack Hurley

This is “Part I” because I have a feeling me or Ted or Jenn will have plenty of reason to use this heading.  I read a lot of stories about cystic fibrosis, lung transplant and organ donation. Often enough I say “HEY!!! I know that guy!” (or gal…)  Sometimes when I notice that – I’m going to put them here…  And I invite Ted or Jen to do the same… (Just change it to the next sequential “part”!!!)

Last week on “Illinois Donor Diaries” there was a post about Jack Hurley.  Actually, it was a letter from Jack Hurley about his journey.  Jack got to spend father’s day with his family because of a beautiful donor who saved his life.  She and her family gave him a lung he desperately needed.

The last paragraph in his letter read:

I will spend Father’s Day with Eileen, Jackie, Melissa, and John. We will have a great time. The kids will start to tell Dad and Mom stories, always the same stories, always just as funny. It will be a very good day. They are all good days.

I’ve met Jack Hurley and spent time with him on a number of occasions. He’s an awesome guy… He attends our lung transplant support group now and then. I saw him sucking O2 before transplant and walking tall after his transplant.

I know there were a few bumps in his road post transplant – yet he still has an incredibly positive influence on the people waiting around him, and the people who have been through it. Regardless of any troubles he may have had, he leaves not doubt that he would do it all again in a heartbeat.

You know I’m all about leaping tall buildings – Jack’s beautiful daughter did the Hustle up the Hancock for the American Lung Association last year in his honor – she wore a very funny shirt that said, “My dad had a hair transplant and a lung transplant, guess which one worked?” with a picture of smiling Jack with his shiny head on her shoulder…

Jack makes it so very clear how much he appreciates the gift he has been given. You just have to see this big, burly, former Chicago Police Detective’s eyes welling, and lips quivering a bit, when he speaks of the generous person who saved his life. I think his donor would be proud of the life she’s saved…

It’s an amazing thing to be able to give someone their life back – to give them back to their spouse and their children. It’s an amazing thing to get your life back too. Jack makes it so obvious that he appreciates the gift he’s been given. I do too. They really are all good days, aren’t they Jack?

"Illinois Donor Diaries" is part of the Donate Life Illinois campaign.  A link is available at www.IamAreYou.org  Stories and posts are available on Blogspot and MySpace.

Chapter 6 of Illinois Donor Diaries is "HEY!!! I know that gal!" It's about a lady tho is very special to me - I'll post about her at a later date.