Revive Hope

Kari’s Klimbers – Hustle up the Hancock 2013!!!

This is my recruitment letter for the 2013 Hustle up the Hancock:

Last year was a crazy, freaking amazing year. At Christmas, I ended up with a 10” cut up the middle of my gut after a rather-unscheduled surgery… She took out 6” of my colon, my appendix and gall bladder, and then my surgeon let me climb 94 floors with y’all only 8 weeks later! A few months after that, the same surgeon installed an incredible gift. I’d been officially listed for a kidney transplant last August; my kidneys have been going downhill for the past few years because of the drugs I take to keep my beautiful lungs. In May, Alex, one of my Hustle teammates – one of Kari’s volleyball teammates – someone who grew up with and loved Kari, and who Kari loved – Alex gave me one of her kidneys. I tell people that I’m slowly being rebuilt into a girl from Iowa. (The above links are to stories about those adventures…)

And last year, my 10th climb, my team was beyond amazing! I was surrounded by over 150 of you, and I never have enough time with any of you, but I’ve grown to love all of you… I always have a handful of people who Kari grew up with… Last year, around 30 people who Kari grew up with came out to climb with us! They came out from Iowa, Minnesota, Wisconsin, Kentucky and Illinois… And Kari’s sister & cousin climbed with us – and Kari’s mom & God-mom were waiting at the top. If you were there – thank you for the reception you gave them…

2013 will be my 11th climb, and the 10th time my Kari’s Klimbers team has climbed 94 floors, 1,622 steps to the top of the John Hancock Center for the Respiratory Health Association of Metropolitan Chicago.

It’s that time of year again… Registration for the 2013 climb is this coming Thursday – on Thursday, November 1st at 8:00am SHARP!!! Over the years, it has sold out in roughly an hour – be there on time! The climb is always held on the last Sunday in February – it will be on Sunday, February 24th, 2013. If this happens to be on or around your birthday, I cannot think of a better way to celebrate! Registration for the full climb this year will again be $140. Like last year, I will likely not have a half climb team unless there is a demand…

As always, my www.climbingforkari.org website could use a little more updating – but most of the story is updated and the links are going to all the right places to give you registration instructions or allow you to pledge… I registered early, on October 15th, to create our “Kari’s Klimbers” team (and personally commit to raise at least $1000) so that our team will be available to join at 8:00am on Thursday, November 1st so there is nothing delaying you from registering! DO NOT SIGN UP BEFORE 8:00AM ON THURSDAY, NOVEMBER 1ST – if you do, you will be committing yourself to raise at least $1000. Registering after 8:00am on Thursday, November 1st does not commit you to raising anything beyond your registration fee (though, I’m always grateful if you choose to do so!!!) Drop me a line if you’re interested in the Hustle this year – or just join my team on November 1st… Remember – the full climb generally sells out in about an hour.

Instructions for joining my team are on my www.climbingforkari.org website… A direct link to the instruction page is HERE… An extensive step by step registration document created for me by one of the lovely RHAMC staff is HERE…

And finally – thank you so much for climbing with me and supporting me in past years… I spoke about quitting a few times in recent years – I’ve had things I’d like to focus on and this takes a lot of thought and energy (and so much of which falls on Laura’s back!!) But, this is what I do…

I do a fair amount of public speaking about organ donation and about Kari (and now about Alex too…) – so much of what I talk about revolves around my participation in the Hustle – around meeting her friends through the Hustle – about the people who come out to support me at the Hustle – about YOU… This climb has become part of who I am and what I do – and YOU have helped make it what it is for me…

Some of you have climbed with me for ten years… Some of you for several years… And every year I have new people. Almost every year I am with someone new who knew Kari, and has come out to remember her with me… Through these past eleven years we have raised over $250,000 – that kinda blows my mind… How many times have you been part of something that raised over a quarter-million dollars? Me neither… And that’s happened because of so many people like you helping me. Thank you. And more special than the money will ever be to me – you’ve helped build me a little platform to tell the world about Kari, and now Alex, and the gifts they’ve given – and you’ve helped me tell so many others about organ donation…

We’ve had so many recipients, and donor family members, and friends of donors on our team – and when I go places to speak about organ donation, people say, “You’re that guy who climbs 100 story buildings with your new lungs!!!” And so many of them even know Kari’s smile, and her name – and that means everything to me. I would have never generated that much excitement alone – I would have never generated that much awareness without all of you.

I know that times are a little tough and cash is a little tight for many of us – and if you can’t make it this year, that’s OK – and thank you for the times you have made it! And if you can make it – I’m honored to have you on my team.

Love, Steve

Steve Ferkau
Kari’s Klimbers
www.climbingforkari.org

Share your life song...

Imagine that you had the ability to allow someone who is facing losing everything – losing their life – to continue… Imagine you could allow them to stay with their spouse, their family, and their children – or maybe you could allow a child, a son or daughter, to stay with their mom & dad & family…

You have that ability…

Check out this little video by Gift of Hope – it’s about enabling someone else’s melody to keep playing once yours has faded:

I viewed this through a different perspective – maybe one that many of us recipients share… When I watched this the first time, I thought of my responsibility to keep Kari’s life song playing… And even though she’s still playing her own song loud and strong – I think I have to weave Alex’s melody into my life song as well…

Please consider organ and tissue donation – share your life song…

If you’re in Illinois, register to be an organ and tissue donor HERE…
If you’re in Iowa, register to be an organ and tissue donor HERE…
If you’re anywhere else in the United States, you can find your registry at www.DonateLife.net

My new kidney - Mabel...

In the pre-op waiting room, right before she was escorted to the OR waiting room, Alex told me that she named the gift she was giving me "Mabel".

A little over twelve years ago, a beautiful girl in Iowa named Kari told her family how strongly she felt about organ donation. Twice. I was in Chicago, my lungs were failing after a short lifetime living with cystic fibrosis... I was dying. In April, 2000, at the age of 17, Kari passed away. At the most devastating moment in their lives, Kari's family honored her desire to become an organ donor. I breathe with Kari's lungs. All of my life, I'd never imagined breathing could feel this good, this fulfilling- I think of Kari throughout the day, every day...

It was a few years after I received her beautiful lungs that we learned about Kari and her family... About a year later, we drove out to Algona, Iowa and we met them... We also met a few of Kari's friends. Over the next few years, Kari's Mom put me in contact with several of her friends... Over the past 7 or 8 years, more than a dozen of her friends have come out to climb with me - I've come to love them dearly...

One of Kari's friends I met early on was Alex... Actually, we met Alex and her brother when we were at a restaurant with Kari's family, when we met them... Alex was among the first groups of Kari's friends to come out to climb with me - and she's back every year...

A few years ago, I got an email from Alex... She explained that there was a young girl in Iowa who needed a kidney, and the girl's grandfather was being tested. Alex told me that if the grandfather was not eligible, she wanted to step up to the plate. And, if the grandfather worked out - she wanted to know how she might go about giving a kidney altruistically to someone who needed one... I told Alex that I was in awe of her, and what she wanted to do - and that she gave me hope, because I knew that, in a matter of years, it was inevitable that I would need a kidney... And knowing that there are people like her in the world helps me worry less... A few weeks later, I got an email from Alex about something-or-other, and it ended with a p.s. that she has a type A+ kidney with my name on it...

In August, 2011, my kidney function got to the point where I was officially listed for a kidney transplant. I felt very loved when a number of people stepped forward and told me they wanted to be tested... I emailed Alex and told her - and I told her about all my fears - for her, not me - whether this could impact her insurability, her future health, or if, God forbid, she could be injured... I got an email back from her telling me to "Stop being such a scairdy-cat" and give her the number to call to get this rolling...

About three months later, I was doing a presentation for Iowa Donor Network and Alex left me a voice message - I still have it on my phone... At the end of her message, she said, "SOOooo, I guess there must be something special about Algona, Iowa, and the girls who come from there...". Yes - I guess there is... Alex was letting me know that University of Chicago had called her and let her know she was a good match... She just wanted to let me know, "You have a kidney!"

Four days before our surgeries, Nesita Kwan from NBC/5-Chicago, interviewed Alex and me at home... They rolled tape for an awful long time and pulled a very nice 90-second spot that aired a few times on May 4th... I wish you could hear everything Alex talked about - about life with Kari, climbing with me, and why she wanted to give me a kidney... Here is the video that aired:

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

Kari wore #13 on her high school volleyball team - Alex wore #7... On May 8, 2012, #7 gave me one of her kidneys to keep me alive a good while longer... I'm pretty sure that, on that day, my lungs reached down and hugged my beautiful, new kidney...

Can you imagine what it feels like to have your life saved by an incredible, beautiful, thoughtful & compassionate girl - who allows you to breathe and live in a way you'd never imagined... Then, 12 years later, you find yourself in trouble again - and you have another incredible, beautiful, thoughtful & compassionate girl, who grew up with and loved Kari - reach out and save your life again?!?!

Alex gave me her kidney on a Tuesday afternoon... An amazing surgeon, Dr. Yolanda Becker, did the installation work... She had already had me opened up last Christmas during my last surgical stunt, and had a look around and knew what she had to work with!!! That Tuesday night I peed five liters...

I woke up the next morning and was still intubated, for precautionary purposes... Laura said I was rather anxious, trying to say something and no one understood - and finally, Laura said, "Alex is fine...", and I immediately calmed down... I then got a pen & paper and, in my propofol haze, wrote a note about how much I love Laura, Alex, Dr Becker & Dr Garrity and luckily then I ran out of paper... When they were about to extubate me - my lung transplant nurses, Penny & Pat, had stopped to visit, so they gloved up and helped... Right before they sent Laura out so they could pull the tube, she asked for another minute - to enjoy the silence - since there would no longer be any of that in a matter of seconds!!!

Alex's parents came out to be with Alex during her surgery and recovery... We'd met them in Algona last November... At least three families told us that when we meet her parents, we will understand how Alex became Alex. We completely agree with that statement! Alex recovered well - I have to believe she was in more pain than she lead me to believe - but I never saw anything but smiles, from her or her folks... Ironically - she had no appetite and was a little nauseous for 4-5-6 days after surgery, where I was looking for a grilled cheese sandwich practically as they were extubating me!!! Alex was released from the hospital 3 days after her surgery...

In two days, my kidney function was normal... It probably hadn't been there in 20 years - years of cystic fibrosis meds had already compromised them before I got my beautiful lungs... Four days after I was opened up on the table - I walked to our local restaurant, Hackney's, and had a ham & cheese sandwich! The next day, Laura and I went on two 2-mile walks!

I promise I will honor and care for Mabel with the same love I've taken care of her beautiful friend's lungs... Since the moment I knew her face, Kari's smile has been on my mind throughout the day, every day - now there will be another smile right next to Kari's - Alex... And the wonderful thing about this smile - is that, every now and then, I get to hug her...  Kari gave me 12 more years with Laura, and all of the other people I love...  She gave me more than I'd ever dreamed possible.  I was a little worried that run might have been coming to an end - but Kari's friend, and my friend, Alex, has just given me who-knows-how-many more years to be with Laura, and to be with all of the people I love, and to leap tall buildings and whatever other kind of trouble I can drag others into with me...  Can you imagine a gift like that?!?!  Thank you, Alex  - I'll love you always...

I'm hoping that I'll soon qualify for honorary Iowa citizenship - because it does seem that I'm slowly being rebuilt into a girl from Iowa.

p.s.  It's almost midnight, but today is Alex & Mabel's birthday - Happy Birthday to Both of us...

She would have been 29 today...

She would have been 29 today…

She’s given me 12 years of life that I would never have had – and I’m really not thinking that’s going to stop anytime soon… And the life she’s given me is indescribable to you normal, mortal, human beings – it’s a life I did not understand during my first 39 years… It’s a life that’s so much easier than I’d ever imagined possible. It’s not that there aren’t any problems, or fears – they’re there… But waking up in the morning and being able to breathe, freely – and not being in the constant state of exhaustion that I didn’t even know I was in… I know this is what love feels like.

And a few years after she came into my life, I learned who she was, and her family sent me pictures – and I had a face, and a beautiful smile to go along with everything I’d been feeling – and I can’t not see that smile with me everywhere.

And a few years after that, I met her family, and some of her friends, and the lady who has her heart – and I started learning more about her… And a few years after that – her friends started pouring into my life… And I learned even more about her, through the eyes of people who love her.

At least once or twice, almost every single week – I get a beautiful, little note from one or two of the people who loved her – or I send a little reminder to one of them to make sure they know how I feel about them…

The Sunday before last – I was surrounded by around 30 people who loved her – who lived near her – who grew up with her – who were her classmates, her friends, her volleyball teammates – who taught her – who coached her… Her Mom, her sister, her Godmother and her cousin were here too… Can you imagine how it feels to have so many people who love her, come out to celebrate her with me?

29 years ago today she was born. I had cake today… Most of the people surrounding me know that I take my birthday pretty seriously. And the people who are the closest to me know that her birthday is more special to me than mine has ever been…

A beautiful lady named Deb, who works at Algona Greenhouse, placed flowers on her grave for me today… The card read:

March 7 , 2012

Happy Birthday, Kari!!!

So, talk about a crazy Hustle this year!!! I usually have a handful of people who knew and love you with me - 5 or 6 tops... Last week I had about 30 people who knew and love you, and about 150 other people who never knew you, yet most of them have grown to love you through me... And Alyssa climbed with me, with Tracy - and your Mom and Godmother were waiting at the top...

I sometimes wonder how you would feel about all this... About everyone making a big deal over you... In my heart, I think you're smiling. Your Mom was doing a lot of smiling. And I was so proud to have Alyssa & Tracy in the stairwells with me...

I never knew you, and I miss you. And I was with a whole buncha people who keep you in their hearts, and help me understand who you were... Happy 29th Birthday...

Love, Lungs & Laura

16,320 steps... because of Kari

This is my tenth climb... When I come out of the stairwells at the top, and I do believe I will come out, I'll have climbed 16,320 steps for the Respiratory Health Association at this awesome event!!!

The year started out rather crazily... On Christmas Eve I was in emergency surgery after a renegade gall stone the size of an angry, small dog (or mothball) tore through my gut... An incredible surgeon, who is scheduled to do my kidney transplant, removed my gall bladder, my appendix, 6" of my colon, put it back together, hosed me out and sent me on my way with an awesome 10" scar up the middle of my belly! A few weeks ago, she gave me permission to climb, sloooowly, and I promised I'd stop if my body says stop... And I will.

I've got 150 crazy people on my team, climbing with me... Among them, there are around 25 people who were classmates, teammates, grew up with, taught, coached, or knew and loved Kari... Kari's sister & cousin are climbing with me... Kari's mom & aunt will be here, cheering us on... #15, #12, #9, #8, #7, #4 and #2 will be in the stairwells with me... Kari was a star middle-hitter on her Algona High School volleyball team -- she wore #13... Her teammates will be in the stairwells with me, and some of them are bringing their moms!! One of her coaches, and one of her teachers will be with us too... They're all coming out from Iowa, Minnesota, Wisconsin and Illinois to help me honor their friend and my hero... Can you imagine what I feel like when I'm surrounded by people who grew up with, and knew and loved Kari?!?! It's pretty amazing... They're beautiful people -- and they give me a glimpse of who Kari would have become...

I do this to tell people about Kari, and about her goodness, and about the goodness of organ donation -- and we also do this for the Respiratory Health Association... They fund research in lung disease, they help people stop smoking -- their work helps everyone breathe cleaner air... They help people with lung disease breathe easier... I know what it's like to breathe with diseased lungs, and now I know what it's like to breathe with the most beautiful lungs in the world... One of their mottos has been, "if you can't breathe, nothing else matters..." I've lived through that motto -- and the RHAMC and all of these people who climb with me help other people breathe.  We have a very special mission...

I know that these are not the best of financial times for many of us... If you have a couple of bucks burning a hole in your pocket, I or anyone else on my team would love a pledge... But more than anything, I'd love it if you would check out my little website and read about the beautiful girl, and all of the people surrounding her, and me, who have allowed me to leap tall buildings...

To see my Hustle page or pledge me, click here...

To see my website about Kari, go to www.ClimbingForKari.org

To find someone on my full Kari's Klimbers team, click here...

These climbs have meant so much to me... Being surrounded by people who know and loved Kari, and by people who know and love me, is something that defies description... And the support we've received from people like you has allowed me to tell so many people about Kari... In the past 10 years, we've raised a quarter million dollars -- because of people like you... Thank you... I get to do a fair amount of public speaking, and often enough, when I walk into a room, more than one person pulls me aside and says, "You're the one who climbs a hundred stories with your new lungs, and with your donors' friends!!!" And often enough, they already know Kari's smile... I am that guy, and I'm proud of that -- and more than anything, I want them to know her smile. I will have had her beautiful lungs for 12 years in April -- and what she has allowed me to do is more than I'd ever dreamed possible...

And finally, and very important to me -- please consider organ & tissue donation, register to be a donor on your state's registry, and tell your family how you feel. I know a beautiful girl from Iowa who knew how she felt and she told her family -- I think about her every single day.

Love, Steve

Steve Ferkau
Chicago, IL
Kari's Klimbers
[email protected]
www.ClimbingForKari.org

CBS interview from January 27, 2012:

My Christmas adventure:

What I did on my Christmas Vacation...

We had such plans for the week after Christmas!!! We were going to Pasadena, and we were going to help on the Donate Life Float in the Rose Parade. I got to ride the float in 2009 and I think it was the most amazing experience I’d ever had, other than falling in love with Laura or getting Kari’s beautiful, new lungs. Being around so many donor family members, other recipients, Organ Procurement Organization and medical and transplant professionals is my idea what heaven will be like. Holy Moly, did I put a fire-hose on that idea!!!

To the untrained eye, the picture above might look like a scene from Raiders of the Lost Ark, with Indiana Jones being run down by a boulder… The more discriminating eye might see a great deal more in this picture. I personally see a gall stone being released from my gall bladder and careening through my small intestines then colon – which certainly cannot end well!

So… Friday afternoon before Christmas, we end up in the Emergency Room because I’ve got a belly-ache that won’t seem to go away and it’s only getting bigger… After an ultra-sound, they were thinking it was a bladder issue (doubtful, and catheterization is uber-pleasant when you’ve already got a belly ache…) The CT scan following that showed a mixed bag of possibilities, including appendicitis and perforated intestines. I wasn’t acting appropriately for any particular ailment, but the pain was covering pretty much all of them. After much deliberation and re-reviewing of the scans and results, on Christmas Eve, we decided it was likely appendicitis and to go in after whatever else might be there…

The surgeon who is scheduled to perform my kidney transplant sometime this year was there, and she had been watching my case. Laura and I had already checked her out months before – we have an incredible amount of respect for her, and faith in her skills. By the end of the day, that would multiply ten times. I felt comfortable and safe in her care. One of the docs who takes care of my lungs, for whom I also feel similar levels of respect, was there to guide and provide counsel on anything to do with my beautiful lungs… On Christmas Eve, when she could have been at home, or other qualified surgeons could have been attending to this – my future kidney surgeon was opening me up to see whussup…

She found a substantial hole in my colon that had dumped stuff-that-should-be-staying-in-my-colon into my abdomen, where it doesn’t belong and causes all kinds of havoc and infection… Apparently, I passed a gall stone the size of a small dog into my small intestines… (She said it was the size of a mothball, but I knew what she meant…) It careened through my small intestines into my colon where, at some point my colon took a right, and the small-dog-size-stone took a left, and the result was sub-optimal at best. Inside my belly, she reached up, under my liver, and found my gall bladder “chock full of stones” (a kinda-common issue with cystic fibrosis patients…) She removed my gall bladder, removed my inflamed appendix, removed 6 or so inches of my damaged colon and re-attached them so I didn’t need a colostomy bag… Flushed my belly out with over 9 liters of fluid, stapled me up and sent me on my way with an AWESOME eight inch scar that will finally get me the reaction at the beach that I’ve been looking for!!!

I wore nothing but a hospital gown while I was in the hospital… You know – providing easy access to everything and all that stuff, along with easy moving around and flashing fanny to anyone wandering by… At home, I am always in Iowa Hawkeye stuff – t-shirts, sweatshirts, windshirts, jackets, coats, gloves, scarves, hats, whatever. It’s always black & gold. I wear it for Kari – though her friends grin and now-and-then tell me, “she would NOT have been a Hawkeye!” I know they like seeing me wearing it anyhoo… And when I pull on my jacket or coat, I feel like a knight in shining armor… I feel like I’m pulling on a protective garment. I feel her strength, and her goodness, and her smile wrap around me when I pull on my IOWA stuff… I didn’t wear it for a whole week at the hospital – but I didn’t need it. Recovering in the ICU, I whined that my breathing was shallow – that I knew I had this big gash in my gut inhibiting things, but I didn’t feel as strong as I thought I might… My doctors grinned – they told me that my lungs were healthy, and that they’d never seen someone go through what I’d gone through, and breathe as well, and as strong as I was breathing… At that moment, I didn’t worry about my IOWA apparel… I was wearing IOWA inside.

I work with Larry & Celeste… Throughout the year, once a week, we climb 108 commercial flights. A few months before the Hustle or Sears, we ramp it up to twice a week. I whine and try to find ways to wiggle out of our climbs, to which one of them will usually roll their eyes and tell me, “just get moving…” My primary lung doc was in California with family when all of this started – when he got back, he came to see me, more on a social than professional visit… He rolled his eyes when I reminded him we had 8 weeks to get me back into the stairwells for my 94 floor climb – he told me that was up to my surgeon… (I will listen to her…) I told him that the Tuesday before all of this happened; my co-workers had me climbing 108 floors in our building.  He said, “THAT is exactly why you are recovering the way you’re recovering…”

I will still whine and complain and try to wiggle out of climbing. And they will still make me climb. And I will also know that they are one of the reasons how and why I was able to sail through a major surgery quite well…

 

 

 

 

And finally – I have amazing family and friends supporting me… I cannot imagine loving anyone more than I do Laura… My Mom & Sisters celebrated Christmas & New Years at the hospital with me and Laura… The picture above is me and my neighbors in my room on New Year’s Eve. Ruth drove me and Laura to the Emergency Room when my $hit started literally and figuratively hitting the fan. She dropped Laura off at the hospital every morning, and paid me a little visit while picking her up every evening… She’s picked up my prescriptions and taken us to our follow-up appointments. And, I know that any of them would have done that for us.

I’m healing well, though not as quickly as I’d imagined. And as goofy and scary as these moments are – they are also the moments when I feel overwhelmed by the love that surrounds me.

The Power of One...

Very often, when I speak to groups, I wrap up my talks with a story that has become a signature ending for me – a little story about the power of one person, or maybe the impact that a person has on one life… I ask people to think about it when the world feels so very big, and they feel so very small… The story goes like this:

One morning, along the East coast somewhere, there had been 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 back into the sea. A man strolling along the beach saw the boy bustling. He stopped and asked the boy what he was doing. The man told the boy, “There must be ten thousand starfish out here – you can do this all day and never make a difference!” The boy looked up at the man with a puzzled look on his face… Then he reached down and picked up a starfish – and he flung it out to see with all of his might. He looked up at the man again, pointing out to sea where the starfish landed – and he said, “I just made a difference in the life of that starfish…”

The story is an old one, with many variations – I first heard it at a caregiver’s celebration – it was told by a social worker at Loyola, Susan Long. I’ve told her several times that I stole it from her and that I use it all of the time to wrap my talks, and let people know how important their one decision, or one action might be… I get to explain to people how I was one of Kari’s starfish.  Susan is OK with that.

So I’m minding my own business – checking out a little organ donation video about Hawkeye Heroes – and I decide to click on one of the recommended videos that popped up afterwards, titled “The power of one…” posted by Iowa Donor Network. It’s a beautiful and meaningful song by Bomshel. About half way through the video – up pops the beautiful girl who saved my life – Kari. And a little bit later there’s a picture of me and Jenn and Annie – and later, another one of me and Kari…

It’s kinda wonderful to find a little surprise like that now and then… It reminded me of another little quote that I love:

To the world, you may be once person. But to one person, you may be the world…

Register to become an organ donor – be someone’s hero… For years after you’ve left this Earth, you may be the world to several someone’s…

 

In Iowa, you can register at Iowa Donor Registry

In Illinois, you can register at Gift of Hope

Anywhere else, you can find your registry at DonateLife.net

A second thought...

Laura’s Mom had surgery on her cervical spine last week. Early in the evening after her surgery, coming out of her anesthesia haze and still pretty doped up, the conversation when something like this:

Laura: Mom, you need to do that thingy every hour (Laura points to her mom’s incentive spirometer)
Mom: I know, I know… I need to do it so I don’t get pee-noh’-mia.
Laura: So you don’t get what?
Mom: Peenohmia – it would be really bad if I got peenohmia…
Laura: Ummmm, yes – it would be really bad if you got peenohmia… It would also be really bad if you got pneumonia…
Mom: Where did that come from???
Laura: Where did what come from? The word? Or the illness?
Mom: The word… Where did that word come from?
Laura: I don’t know… (pulling out her iPhone to look it up…) I think it’s Greek or Latin or something…
Mom: Well, it must be Latin… Because it’s Greek to me…

Mom had some spinal decompression, bone spurs removed, and some of her cervical vertebrae repaired… They used donor bone in Mom’s surgery. I don’t know if Mom would have been a good candidate to have bone graft material removed from her hip, as they can sometimes do – that could have greatly complicated her procedure and made recovery much more difficult. But Mom and her doctors didn’t have to concern themselves with that – because there was donor bone available.

My friend Annie has had back issues for years and had them addressed this summer. I know Annie because I’m paired up with her now and then for organ & tissue donation presentations – her husband, Jay, died and became a donor. I got a note from her a few months ago saying they were going to, “fuse the discs with a human allograph… Does that make me a tissue recipient? Wow, that's cool.”

Yes – that does make you a tissue recipient along with Mom. And yes, that is cool…

I regularly get to tell my story at presentations that are arranged by Gift of Hope and when I’m not speaking, I actually listen to the person from Gift of Hope presenting. (I really do! It’s not always all about me…) From them, I’ve learned that around one in twenty people will be impacted by tissue donation in their lifetime. One in twenty of us will be the beneficiary of some type of tissue donation. It might be something as critical as a heart valve, or something as life changing as a cornea – or something that allows us to stay mobile like tendons or ligaments or bone…

We so often talk about organ donation – and sometimes tissue donation does not get the same attention. There have been some wonderful and amazing tissue donors that have crossed my path, like Will and Samantha… And so many organ donors are also tissue donors…

We hear about donor’s saving 7 lives – and saving or improving the lives of 25 people when tissue donation is factored in… My mom-in-law was one of those 25 people… Anne was one of those 25 people… I’ll bet if you look around you there are a lot more people than you realize who have been impacted in a good way by donation…

There were surgeons and doctors and nurses and therapists and other medical caregivers involved in making this work – and somewhere out in this world, there was also a person who we will likely never know who helped make this work – a person or a family who was thoughtful and caring enough towards their fellow human beings to choose to be a tissue donor. Sometimes we don’t give it a second thought that this will be available to us when we need it – that our surgeons and doctors will have the materials they need to “fix” us and take some of the pain away and make us more mobile…

I’m giving it a second thought today. I’m very thankful for these donors who helped “fix” my mom-in-law and Annie. And if you haven’t considered organ and tissue donation – give it a second thought today… Sign up on your state’s registry…

Rachel...

Before the sun comes up Tuesday, Rachel Garneau’s boyfriend will drive her from her home in Elmhurst to the University of Chicago Medical Center, where a surgeon will operate on this perfectly healthy 20-year old college junior and remove her left kidney.

That is the first paragraph in a two-part series in the Chicago Sun-Times by columnist Neil Steinberg that ran a few weeks ago – I’ve been meaning to post about it and just got a little behind with life, so I’m puttin’ it out there now…

The stories are about a 20-year-old young woman who decided to become an altruistic living kidney donor… The two columns are, in my opinion, well worth the read. They tell a story about a very special woman, and a very special gift…

The first story, published on May 29, 2011, titled “Student Giving Stranger a Kidney”, tells about the path to Rachel’s decision…

The second story, published on May 31, 2011, titled “Cutting out a kidney is gloopy work”, touches on Rachel’s surgery. (And the surgeon's description of the pancreas made me laugh out loud...)

At the end of the first column, the surgeon who accommodated Rachel’s gift said:

“I just think she’s on a higher moral plane,” she said. “She’s great. She’s awesome. She is just an incredibly generous person who saw this is the right thing to do.”

 

There’s a YouTube video that Donate Life Illinois produced about a similar young lady, who gave a similar gift. I’ve always thought it was a very powerful video – Rachel reminded me of the person in this video:

I know people like Rachel… I know people who have done what Rachel has done – and I know people who are considering doing what Rachel did. For those of us waiting for a kidney, lungs, heart, liver – any lifesaving organ – or those of us who have received a gift like this from a living donor, or someone who has passed away and became an organ donor – I hope that Rachel, and people like Rachel can someday, somehow understand how people like me feel about her.

I do believe that there is pure goodness in this world – I’ve already been the beneficiary of quite a bit of that… After eleven years breathing with Kari’s beautiful lungs, and dealing with the rather-toxic medications coursing through my system that allow me to breathe with them – I’ll need a kidney in the not-too-distant future… Hearing stories like Rachel’s leaves me with a little less fear, a little more hope, and a very warm feeling in my heart…

A Beat Goes On... Ladies' Home Journal

 

Check this out!!!

Our Melissa is in a beautiful spread about organ donation in the June 2011 edition of Ladie’s Home Journal!!!

Melissa’s story in the latest issue of Ladies’ Home Journal is titled, “A Beat Goes On…” There are five stories about organ donation in the article titled, “Lifesavers: Stories of Organ Donation” – four stories about successful transplants, and one story about a Michigan woman with cystic fibrosis who did not survive the wait for lungs… I’m naturally biased, but Melissa’s story is my favorite story in the group. (It’s a lot easier to play favorites when you’ve actually hugged the person…)

In addition to her story in Ladies’ Home Journal – you can also check out Melissa’s website about organ donation, and about her journey at:

 

www.MelissaSimon.org

 

I met Melissa via email back in 2008 – she sent me a note congratulating me when I was chosen to ride in the Rose Parade… I asked her if she could write a little story for me about herself, and her donor, Chloe, that I could post here on Revive Hope. She didn’t have a great deal of information about Chloe yet – but she had exchanged anonymous letters with Chloe’s family – so she had enough information to have an idea what Chloe was like…

Instead of the little story I asked for – she responded with a beautiful, little letter, from her to Chloe… My post about that exchange, and Melissa’s letter is titled, “Open Hearted”…

About a year later – Donate Life Illinois used Melissa’s letter to create this amazing video about her and Chloe:

This video was involved in helping Melissa meet Chloe’s family. Before they knew who Melissa was, Chloe’s Dad stumbled across this video while doing an internet search… After seeing the video – they reached out through their OPO, and made contact with Melissa…

I don’t know what it’s like to lose a child – I think about that quite often – I have no doubt Melissa does as well… But can you imagine stumbling across a video of someone as precious as Melissa, who has your child’s heart beating steadily in her chest – and listening to her reading a beautiful thank-you letter to your child for the gift she received?

There are over 110,000 people listed and waiting for a gift like the one Melissa received – there are so very many of us who have already received that gift… And pretty much all of us are as thankful as Melissa is in the beautiful video above. Can you imagine, many years from now, someone having the same thoughts and feelings that Melissa has about Chloe – having them about you? Be someone’s hero – join your state’s donor registry – let people know how you feel about organ donation…