Revive Hope's focus is to revive hope by creating inspiration. This blog will have postings of inspiring stories about individuals directly affected by organ and tissue donation, provide information about organ and tissue donation, and inspire those who view the site to give hope through compassion!
You have an inspirational story, an article, or new information about organ and tissue donation that you believe we should post a blog about, share it with us.
Some of you may have seen this moving video that aired on KathyLee & Hoda a couple weeks ago...If not, be warned---grab a tissue.
Below is music video compiled by the University of Minnesota's Amplatz Children's Hospital staff and patients. It is set to the song "Brave" by Sara Bareilles, which seems so fitting for the little faces you will see in this short video.
At 0:56, you will see a young girl showing you her scars. This is Lanie. She received a kidney/liver transplant on April 28, 2013 and was a patient at U of M for almost 5 months. I've followed her story since transplant, and she is quite the amazing little girl. I hope to share her story on ReviveHope in the future. She is a brave fighter, and such a big inspiration.
Thank you to all of those in the medical field who care for and love on children like Lanie! You brighten their days and help lighten the burden their parents carry.
The morning of August 16, 2010, started out as any other morning. I woke up and got ready for work then stopped to give my husband, Jeff, a hug and kiss. A typical morning routine that we never missed — one that put a smile on my face as I rushed out the door to work.
I realized something was wrong that morning when I called him to join me for lunch. His voice was different. I rushed home to find my husband curled up in pain and scared for his life. After rushing him to the hospital, I learned that he had suffered from a brain aneurysm, and I had to say goodbye to my husband, my best friend, and the man who taught me what it was like to truly love and be loved.
As the day moved on, decisions had to be made. There was no question in my mind that Jeff
would want to be an organ donor. When I realized that he wasn’t going to make it, my first call was to his best friend, Jerry. You see, Jerry was on the transplant waiting list for a kidney.
Jeff and Jerry used to work together at Toyota of Des Moines. They had a ton in common, and I hit it off right away with Jerry’s wife, Anna. They were great friends of ours, and it was very hard for us to see Jerry so sick. Anna and Jerry’s situation prompted Jeff and me to discuss our end-of-life plans and the importance of organ donation. I’m thankful we did because when I was faced with the decision, I knew exactly what Jeff would want me to do.
I’m pretty sure the nurses in the ICU at Mercy thought I was crazy because as soon as I found out that Jeff wasn’t going to make it, I started bugging them to send someone from the Iowa Donor Network to talk to me. I knew I didn’t want to lose the opportunity to save another person’s life — especially if there was any way that Jeff’s kidney was a match for Jerry. A day later, Jerry had transplant surgery to receive Jeff’s kidney.
There are many things about Jeff that I miss. We loved riding motorcycles, gardening and watching the History Channel. We shared a passion for all things music; he had amazing talent, and I loved to listen to and watch him create. I am blessed in that I can always go back and find comfort in the music he wrote.
I’ve also formed a strong bond with Anna and Jerry. Watching how they’ve thrived since the transplant has been wonderful for me. They have loving children and grandchildren that light up their lives and bring meaning to my loss.
I am so proud that Jeff felt so strongly about being a donor. Even though his passing was traumatic and sudden, his legacy continues in the gift of life he gave to many people.
To see Tori in the Power of Yes video series, click here.
Hello friends! It's been such a long time since I've posted with Revive Hope, but Donate Life Month feels like the perfect time to return to the family I hold so dear.
A few months ago a friend sent me the video below. I wanted to post it on my own blog, Chara, but I decided to sit on it. I thought it would be a perfect post for the month of April, and even more fitting for Revive Hope. {Thankfully Ted welcomed me back after a 3 year hiatus}
The song below is arranged by a man named Paul Cardall. You may recognize the song from the TV series Lost. Paul arranged this piece after receiving a life-saving heart transplant. Here's a short excerpt below from Mr. Cardall's YouTube page.
"{Uploaded on Mar 17, 2011 } Most of you know that last year I received a second chance at life after a donor heart was placed in my chest. Ironically, my younger brother passed away while I waited for the transplant surgery. He was unable to donate his organs. (The video contains actual footage from the day mom brought our baby brother home).
Today, beating in my chest is the heart of another young man who like my brother has gone home to the God who gave us life.
The best way I know how to express the raw deep emotions I've experienced is through the piano music I create.
Life and Death was originally written by Michael Giacchino for the show LOST. I fell in love with the piece and it speaks peace to my soul. Together with Steven Sharp Nelson and Marshall McDonald I arranged "Life and Death" for my latest album, New Life."
I've listened to this song more than twenty times since my dear friend sent it to me. I've downloaded the sheet music, and play it numerous times a week. Music is a second language to me. It speaks to my soul. It whispers the grandest stories. It makes me want to dance and it moves me to tears. It is my love language. Without music, I would be lost.
This song, Life & Death, speaks to me. It is so simple, but yet the message it tells, is such a beautiful one. There is an enormous sense of emotion. Love. Pain. Sorrow. Grief. Hope. Joy. Triumph.
I've sobbed while both listening and playing this piece. I can't help but to think of our beautiful friend Kari, or the man she saved. I can't help but to think of how precious this life is. How much I take for granted, and how truly blessed I am. I can't help but to think of the beauty that is in both life and death.
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
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…
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...):
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…
There ain't no doubt in no ones mind That love's the finest thing around Whisper something warm and kind *
Somewhere around 23 years ago, not too long after we’d started dating – I was driving Laura home. As we were about to pull into the complex where she was living with her Mom, whatever radio station we were listening to started playing a set of four James Taylor songs… I recall that we drove around the neighborhood so we could listen… I was already madly in love – and I don’t know too many other artists who make you feel better about where you are and who you’re with than him… She told me that she and her friend Lee always went to see James Taylor when he was in town.
Her birthday was a month or so after that – and James Taylor had booked a concert somewhere around the city. I thought it would be a fun idea to get her tickets to his concert…
Some people find this rather shocking, because I usually strut around as if I own the world – and maybe it’s from living with a chronic, terminal illness – but I’d always had some issues with worthiness and self-confidence, particularly in relationships… Laura and I hadn’t been dating all that long, and I kinda worried if I gave her two tickets to the concert for her birthday – that she might not actually take me… So – to avoid that whole issue, I gave her four tickets for her birthday, figuring that I’d have a much better chance of being with her at the concert!
I really hadn’t been to a lot of concerts in my life – I started working when I was quite young – and going to James Taylor with Laura was actually one of my first “real” concerts… She did invite her friend Lee, and we all had a wonderful time…
On Monday – Laura and I went to see James Taylor and Carole King. This time she bought the tickets – and she didn’t really give me an option of taking anyone else. Not that I would have…
And I feel fine any time she's around me now, she's around me now, almost all the time. And if I'm well you can tell that she's been with me now, she's been with me now, quite a long, long time. Yes and I feel fine. **
It’s different now. Everything is different now. There were more than a few quiet moments at the concert when my eyes were welling up, thinking about all of the years that have past since that first concert. So many of their lyrics are beautiful, and emotional – and make you realize how special life can be… And now, emotions are usually a little more intense than they were before I was given this gift. I didn’t have it on my schedule to be hanging around this planet as long as I have. And I never imagined I’d be here with Laura as long as I have… And the girl who let me stay here – and her smiling face… She is always in my mind…
I apologize because I’ve been slackin’ off for the past few months and I need to get back in the groove… It’s not that I haven’t had a lot to say – the spirit just wasn’t moving me to say it… (I had a sixth grade science teacher who, after I was goofing off much of a semester, told my Mom that I seemed capable, but only when “the spirit moves him…” Mom assured her that the spirit would begin moving him that day…) While I was slackin’ off – I missed telling you about Annie’s adventures at the Rose Parade… And about Tim Joos, who with his beautiful daughter Samantha has doubtless inspired many to register to become donors – has become an altruistic living kidney donor himself!!!
And probably – over the next few weeks – Melissa is going to tell you a few stories about having more than a dozen people with stethoscopes listening to her beautiful heart… She was with seventeen people who remember that beautiful heart while it was being used by its original owner – their friend, Chloe…
Laura’s Mom told me that she wanted to hear more about Annie’s Donate Life Float ride, and I think I told her that I would do that today. I guess I lied about that… (Sorry Mom!) And there was a fun little thing I wanted to post about being at Jenn’s wedding, but I’m holding off on that too… I will touch on both of those topics shortly…
I got a note from a chick I adore, with a link to a video. It’s a beautiful, little music video of her song, “Pass it on.” The chick I adore works with a couple of other people I adore and they make up a band named Sons of the Never Wrong. Whether Laura and I are groupies or stalkers – I guess it’s a matter of perspective. Anyhoo – I posted about her song last April. It’s a song about so many things, but in my heart, it’s about one thing…
A long time ago, while she was writing this song – I got a precious little note from her asking me if I was aware that I inspire art… I guess I am now… In a verse in this song, she touches on a few people who are special to me, even though they’re not around anymore – but really, they’ll always be all around some of us…
She sings of a didgeridoo. That’s about a beautiful girl named Lizzy who had cystic fibrosis like me, and she was not on this planet nearly long enough. But, she did have two beautiful, new lungs for almost five years. As can happen to any of us recipients, at any time, after about four years with her new lungs, she went into rejection – she passed away while waiting for another transplant. I miss her. She’s one of the people I think about when I try to convince others to consider organ donation… Back in May 2007, I posted about Lizzy…
She also sings of whispers. I think she may have been influenced by a post I wrote back in May 2008, about a bike ride, which was titled Whispers… In her song, “Whisper” is about Kari, and about my life breathing with her beautiful lungs that she passed on to me… Her little music video is extra special to me, because I have a little part in it!!! Yup – that’s me holding a picture of Kari at around the 2:25 mark – and me writin’ on the sidewalk at 3:37… And the chick I adore who I keep referring to as "she", is Deborah Lader of the Sons of the Never Wrong. If you have trouble with the video below – here is a link to the Vimeo video, “Pass it on.”
“Pass it on” can mean so many things – but to me, it’s about the gifts one gives when they agree to organ donation… Please – check out the Son’s video… And,
A few Saturdays back – I got to spend some time with the Chana and Gulotta families, while they put the finishing touches on the floragraphs of Cameron and Jay that will be on the 2010 Donate Life Float. Scott posted a beautiful little piece with several pictures of both families and the floragraphs of Chandler and Jay titled Donate Life Float Floragraph Decorating Recap…
This is Annie with her daughter Elizabeth, and her son, JR… JR is part of the Jay Gulotta Band – I’ve heard them play – they’re a pretty neat group – they do a lot of original music, and a few covers. A few months ago, Annie shared the start of a song that JR had been working on – I found it incredibly moving even though I had only heard the first verse… Anne later shared it with me as JR finished his song, in a simple acoustic version and finally a version backed up by the rest of his band. They shared that version at our little get-together finishing the floragraphs…
JR got the inspiration from his Dad, Jay, who died almost eight years ago and became an organ donor… JR introduced the song to all of us – he spoke eloquently about being on the road one day, feeling a breeze across his face, and feeling the presence of his Dad – and realizing that he was going to be OK – that everything was going to be OK… It’s a beautiful song – It doesn’t speak specifically to organ donation – but I think if you’re involved in organ donation, or if you’re a donor family, and maybe particularly if you’re a recipient – and maybe more so if you’re breathing with new lungs – you’ll find it incredibly beautiful…
If the world is a nice place – this link will open up your MP3 player… JR’s song is titled Thank you…
I’ve been chatting with friends and other recipients and lately, the idea that I’m approaching the ten year anniversary of my transplant comes up often – yup, it’s still about five months off, but it’s still coming up… For those who don't know, ten years is a good, long ride for lung recipients!!! And walking home after one of those chats, it dawned on me that 20% of my life has been with her lungs. She’s given me one fifth of my life – and in a way I’d never imagined possible. Not that there was anything wrong with the other four fifths – they were pretty wonderful… Those last few years before I was given her lungs were a little rough, but there was still wonderfulness in those years too. But this last 20% has been beyond my wildest imagination… And she’s given me almost half of my life with Laura. We’ve been married just over 20 years – and though Laura watched me crash and burn 12-13 years ago – these last 10 years have been beyond amazing. I know there are moments when she wishes I’d just shuddup, the extra oxygen did seem to inspire a motor-mouth... But none of us has ever associated being quiet with this gift…
Can you imagine a gift like this? Can you imagine a fifth of your life as a gift? Half of your marriage as a gift? And not just a fifth or a half, but a truly amazing fifth and half… A fifth and a half that make me tear up just thinking about it… After struggling through four-fifths and not even truly understanding I was struggling, because it was just life – breathing like I do now is what I was always lead to believe heaven would be like…
And do you know how many friends I’ve met since this gift – how many lives have touched mine? Not only friends I’ve met on this journey – but friends I’ve met because of her – her friends and family – and they’re more precious to me than you can possibly imagine…
I'm not alone in how I feel. This is how so many recipients feel about the people, and the families who save our lives...
On another note – I fell in love with a song these past months… It was written by Brice Williams and performed by Lady Antebellum, and titled “I was here.”
You will notice me I’ll be leaving my mark, like initials carved in an old oak tree You wait and see Maybe I’ll write like Twain wrote Maybe I’ll paint like Van Gogh Cure the common cold, I don’t know But I’m ready to start cuz I know in my heart…
When I first heard the lyrics I welled up, and I wondered what Kari would have been, and what she’ll let me become… I immediately thought of my friend TC, over at donorcycle – she wrote the most beautiful thing I’ve ever read about Kari titled “Legacy.” TC touched on that – on what she might have been… When I heard the first verse, I wondered if I’m her initials carved in an old oak tree – if I’m a mark Kari left behind... I hope I am.
Cuz I know it’s my destiny To leave more than a trace of myself in this place
I wanna do something that matters, say something different Something that sets the whole world on its ear I wanna do something better, with the time I’ve been given And I wanna try, to touch a few hearts in this life Leave nothing less, than something that says “I was here”
And I know that I, I will do more than just pass through this life I’ll leave nothing less than something that says “I was here”
Is there a better way to leave something behind, that says you were here, than organ donation? A better way to leave more than a trace of yourself in this place, than saving a life, or several lives? Is there a better way of touching a few hearts in this life, than giving someone a fifth or a half of a life or marriage as a gift? I think it’s a beautiful song – here is Lady Antebellum’s version:
I hope that when others look at me, they see me as nothing less than something that says – She was here.
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