Revive Hope

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.

This is one of my favorite pictures in the whole, wide world!!! Can you feel the joy and excitement in this picture? (Probably because they were around the 7th floor and not thinking about the 87 they had left to climb!) These are Kari’s friends – below are several more shots of the people who loved and surrounded Kari, and now they are my friends… I breathe with Kari’s lungs – a gift from an incredible girl, and an incredible family who suffered an unimaginable loss. The pictures also include a chick named Melissa – the heart thumping in her chest is from a precious girl named Chloe…

It’s that time of year again… Registration for the Hustle up the Hancock is only one week away at 8:00am sharp on November 1st!!! Here is my recruitment letter I sent to my team last week:

Ten years!!! 2012 will be the tenth time I’ve climbed 94 floors, 1622 steps, to the top of the John Hancock Center for the Respiratory Health Association of Metro Chicago.

Ten years ago, I met two chicks at a booth at a health fair on Navy Pier – Katie and Gina – they were at the fair representing the Respiratory Health Association of Metro Chicago. I stopped to thank them for what they did for people like me… And I told them about Kari. They told me about a crazy little event they ran – they invited me to climb 1,622 steps to the top of the Hancock! At first I thought, “What’re they, nutzzz??” Then I went home, climbed 10 floors to our unit – and sent a note to them telling them that I wanted in…

I sent a note to Kari’s Mom. They’d sent me pictures of my beautiful donor – I asked her if I could use Kari’s pictures on my Hustle page, and I showed her what it would look like… She said yes – and she also sent it to several of Kari’s friends.

That’s how everything started…

Since then, I’ve had hundreds of you on my team – and more than a dozen of Kari’s friends have come out to join me, and to remember her. I’ve never done this to raise money – I do it to tell people about Kari – but throughout these past ten years, and through the end of this year, we will have raised a quarter-million dollars for RHAMC!!! Awesome, no???

It’s that time of year again… Registration for the 2012 climb is in one week – on Tuesday, 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 26th, 2012. 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 be $140. Like last year, I will likely not have a half climb team unless there is a demand…

My www.ClimbingForKari.orgwebsite needs a little updating – I’ll get to that eventually, but the links are going to the right places. I’ve already registered and created our team early by committing to raise at least $1000… So, our team will be available to join at 8:00am on Tuesday, November 1st so there are no delays in registration. DO NOT SIGN UP BEFORE 8:00AM ON TUESDAY, NOVEMBER 1ST – if you do, you will be committing to raise at least $1000. Registering after 8:00am on Tuesday, 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… I’ll sent you a reminder with links to the registration page a few days before November 1st.

Instructions for joining my team are on my www.ClimbingForKari.orgwebsite… 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 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 – 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 nine 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 ten years, and by the end of this season, we will have raised over $250,000 – it kinda blows my mind… How many times have you been part of something that raised a quarter-million dollars? Me neither… And it’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 the gifts she’s given – and you’ve helped me tell 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 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

The pictures below are some of Kari’s friends… More than a dozen of them have come out to climb with me over the years. And along with them – hundreds of my friends and family, peeps from Iowa Donor Network and Gift of Hope – have come out to remember her, and honor her with me…

 

 

 

 

 

 

I think she would be so very proud of the friends who have come out to remember her, and honor her… I think she would be honored by all of the people who have been on my Kari's Klimber's team.  I know I’m proud of them.

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

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…

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…

 

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…

 

Every year during April – Loyola University Medical Center has a donor remembrance ceremony… I’ve posted about it before… And actually, the year after I received my beautiful lungs, and before I knew about Kari being my donor – I got to be the speaker for Lung Recipients… It was one of my first speaking gigs, and it kinda lit a fire in my desire to tell people about organ donation, and then to tell people about Kari when I learned about her…

This year, as I usually do – I had a number of wonderful experiences – but I want to tell you about one of them that started around a story that was covered in an incredible ESPN story and video last month… The video is nice and long – about 17 minutes – and it tells a story about and incredible man and his family, and the gifts he and they gave. It’s well worth watching, and it might be wise to have a Kleenex handy:

It’s not the first time ESPN has produced an amazing segment about a donor… A few years ago they produced a segment titled “Ray of Hope”, about the North Carolina mascot, Jason Ray… I had the honor of meeting Jason Ray’s parents when I was at the Rose Parade in 2009… I knew that Paco Rodriguez was from Chicago and, after watching the above video – I’d hoped that someday I would meet his family…

After I saw the video about Paco – I reached out to Ashley Owens, the recipient of Paco’s lungs, because we both have things in common… We both have cystic fibrosis, and we both breathe with beautiful, new lungs… I had actually seen a video about Ashley many months before – here is that video:

 

So – back to the candle lighting ceremony at Loyola… I got there a little early so that I could meet some of the folks manning the Donor Registration tables – and as I wandered past a few of the signs and tables, I see a big poster of Paco, and his brother, Alex, is standing next to it!!!

 

There is a point in the video where the man I’m standing with in the picture above, Paco’s brother Alex says, “I remember, looking over to my sister-in-law, and telling her, I would think he would be very disappointed to see that all the hard work that Paco did to keep his body in the shape that he kept it… his heart – to let it stop beating… I think you should give someone else a chance, now that he doesn’t have one…”

Paco’s wife Sonia continues, “He wanted to be a hero… He would always tell me that. So I said, if that was his goal in life, then, we’re going to do it for him…”

In a little note back to me, Ashley wrote: “Paco's wife gave me a picture of her husband which I have in my room. I like to make sure it’s in a place so I can see him and thank him every morning. I believe that when you are living your life with appreciation for a gift like we have received, we make sure that it is much more meaningful and try never to forget the gift that was given to us!”

Paco achieved his goal of becoming a hero – to five people in particular, and to their families – but also to all of us who have come in contact with his story…

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…

 

Tuesday was my 51st birthday… Tuesday was also the day that we had to put our Molly to sleep… In one way, it kinda put a damper on some of the birthday celebrating going on – but in another way, sometimes loss reminds us of how much we love all of the beings surrounding our lives…

Molly was our almost-17-year-old cat… She had been having respiratory problems and a number of issues and over the past year or so, she went from around 15 pounds, down to 6-7 pounds… But she had still been playing and eating and seemed to have a good amount of quality in her life… Our vet told us that when she stopped eating, that was probably an indication that it was time… She stopped eating, for the most part, a few days ago – then we noticed on Monday night that her breathing was labored. Laura and I both pretty vividly remember labored breathing, based on personal experience, so we knew that there no longer could be much quality in Molly’s life… With people, we do what we can to save and prolong life – but there comes a time when a patient decides that we’ve been through enough, we’ve fought the good fight, and we’ve done enough… With our pets, it becomes our responsibility to them to decide when that time is…

We had three cats while I was listed and waiting for my beautiful lungs – Kitty, Pinhead and Molly… Molly was the youngest. She came into our lives in 1994 and took over… She became the alpha-cat with Kitty & Pinhead too… Molly was often airborne in the pictures we took of her when she was little… But Molly was also usually the one who curled up with me when I slept on the sofa… Every day, during the three years I waited for my lungs, after my second therapy-pounding treatment at around 2pm, I would take a nap on the sofa and wait for Laura to come home from work… Often enough – Molly would hop up and curl into my belly, purring… She seemed to have a radar for how I was feeling, and she would do that when I was a little scared or hurting – it was comforting and would sometimes get my mind off myself…

Not long after I got my beautiful lungs – our oldest cat, Kitty, developed diabetes… Several weeks later, I was diagnosed with diabetes due to the medications I take – and we joked about Kitty’s diabetes being contagious. Several months later – kinda out of the blue – Pinhead went into kidney failure over a matter of days, and we had to put her to sleep – she was only 10 years old. At that time we stopped joking about me “catching” ailments from the cats… Kitty’s diabetes was just one factor in a group of issues he had – and a few years later, at the age of 19, we had to make the decision to put Kitty to sleep too…

I know that this is not the most uplifting post in the world – and it’s not even really all that much about organ donation… In my heart I know that looking at statistics is sometimes futile… When I was diagnosed with my cystic fibrosis, life expectancy was 14 years – I’ve almost quadrupled that… Post lung transplant, only a little over half of us survive beyond 5 years – and this week I passed 11 years… But there were times while I waited for my lungs when I sat alone with Kitty, Pinhead and Molly – especially Molly – and I would think to myself that there was a good likelihood that at least a few of these cats were going to live longer than me…

On the plus side of all of this – I’ve outlived all three of the little buggers…

So… What does this all have to do with organ donation?!?! Well, maybe not much… Maybe everything… Maybe you too can commit to making a decision that will allow someone to outlive their cats, and somehow take a warped sense of pride in doing so… Please consider organ & tissue donation – tell your family how you feel – and find your state’s registry and register your feelings at www.donatelife.net

It’s National Organ & Tissue Donation Awareness Month – and in that spirit, I’d like to share a song I love with you… Around two years ago – right around this time of year – I got a note from the lady who wrote the song, Deborah Lader… She asked if I liked the idea that we inspire art.   I do…

The song is “Pass it on…” by the Sons of the Never Wrong. There’s a verse in the song that starts, “Here’s a whisper… And a didgeridoo…” Deb explained to me that the “whisper” is Kari – and the “didgeridoo” is my beautiful friend Lizzy, who was also a CF / double lung recipient and passed away while she was waiting for a second set of lungs… Lizzy introduced me to the Sons

A year or so later – they made this little music video above, and Deb asked me (and Kari) to make a few cameo appearances… I think it turned out very cool…

 

Eleven years ago today, Kari passed away… Eleven years ago tomorrow, my life changed in ways I’d never imagine possible… Still – eleven years later – I find myself amazed at how it feels to breathe like I breathe… These next few days I get to celebrate the eleven incredible years of life she’s given me – but it’s also a solemn time for me… I also mourn the loss of the incredible girl who gave these lungs to me – and for the family who lost that incredible girl.

Her smile is on my mind always… I have a number of pictures of her, including this fuzzy, photo-booth one of Kari with her friend Katie – I’m happy to call Katie one of my friends now… She gave this picture to me quite a while ago and it is one of my favorites…

In their first letter to me, her family explained how Kari spoke out about organ donation twice in the month before she passed away… Sometimes when I speak to people, I tell them that I don’t know what made Kari feel the way she felt about organ donation – I tell them I don’t know why someone so young could feel passionate about something like that… But I’m not sure that it’s true that I don’t know why… I’ve met Kari’s family – and I’ve met a whole bunch of her friends… I’ve hugged the people who surrounded her, and loved her – the people who I know she loved… They’ve told me wonderful, touching, funny and sometimes irreverent stories about her – and they’ve given me a picture of who she was. It’s only a little snapshot when compared to the people who knew her – but it’s enough to see that she was a good, good person. And that she cared about other people.

Today, there are flowers on Kari’s grave from me and Laura… A very special lady named Deb at Algona Greenhouses takes care of this for me – and she always takes a picture and mails it to me. She does beautiful work… All of us in this situation want to say thank-you... And we want to remember and honor the person and family who helped us... There seems to be so little we can do – we can't give the person back to their family, even though I think that a lot of us, after learning about them, would do so... I try to say thank-you in a lot of different ways.   Every year Deb helps me say thank-you, and helps me remember her in a way that is very meaningful to me… What she does for me means a lot to me…

Thank you for being who you were, Kari.