Revive Hope

Even celebrities believe in Organ/Tissue Donation!!

I'm sure many of you heard of the tragic passing of Natasha Richardson two weeks ago. The wife of  Liam Neeson, mother of two, and daughter of Vanessa Redgrave passed away after a mishap on the skip slopes in Canada.

Natasha was an advocate for AIDS research, and the following was the statement released last week by The Foundation of AIDS Research:

March 19, 2009—amfAR mourns the sudden, tragic loss of the talented stage and screen actor and much loved amfAR Trustee Natasha Richardson.

Natasha Richardson joined amfAR’s board of trustees in September 2006.  Most recently she was a featured speaker at the Foundation’s annual New York Gala fundraiser on February 12, 2009.  A dedicated AIDS advocate, Ms. Richardson generously contributed her time and resources to amfAR over more than 15 years.  In 1999, she spearheaded Unforgettable: Fashion of the Oscars, an auction of Oscar dresses that raised more than $1.5 million for AIDS research.

“Natasha was an eloquent and persuasive spokesperson for amfAR,” said Chairman of the Board Kenneth Cole. “Her unique combination of passion, grace, and intelligence made her the perfect ambassador for the fight against AIDS.” 

For Ms. Richardson, HIV/AIDS was personal. Her father, the British film director Tony Richardson, died of AIDS-related causes in 1991.  But her commitment to the cause was driven equally by her unfailing compassion and humanity.

Ms. Richardson’s service to AIDS organizations in the United States included work with Bailey House, Elton John AIDS Foundation, God's Love We Deliver, and Mothers' Voices.  In the United Kingdom, she was involved in the Aids Crisis Trust and National Aids Trust, for which she was an ambassador.  In November 2000, she was honored with amfAR's Award of Courage....

I remember watching The Parent Trap with her in it (the newer version, not the original), and thinking to myself what a cool mom she was!! I've always thought she was beautiful, and loved her in Maid in Manhattan!! I didn't follow her career much, and in my google search for articles on organ tissue donation I found out what a huge advocate she was for AIDS research.  I also found the story below (not sure how reliable the information is, as it appears to be from the tabloid magazine, People):

As the loved ones of Natasha Richardson continue to mourn, a family decision made in the wake of the Tony-winning actress's sudden death on March 18 has brought a measure of comfort: After Richardson was taken off life support at Manhattan's Lenox Hill Hospital, her family requested that her organs be donated to other patients whose lives they might save.

Organ donation "is very Natasha," a family friend says in the latest issue of PEOPLE, on newsstands Friday. "She spent so much time fighting the stigma of AIDS; someone like that would naturally donate her organs. At least by donating her organs something good could come out of [the tragedy]."

I came across the same story on other sites like EOnline, CNN & Fox News, etc.  In the midst of tragedy look at the affect one beautiful woman, and her family had on spreading the awareness/importance of organ and tissue donation!! (Let alone, all the advocacy she did for AIDS). Think of the millions of people across the world who read those words above, who may have never thought of organ donation! What a legacy she left behind!

Granted that our legacy may not be as grandiose or immortalized, but you too can leave a legacy!! You can have a similar impact on the world!  First, please consider talking with your loved ones about your final wishes.  It may seem a bit morbid, but it will make their potential decision easier in the future. Second, sign up to be an organ donor with your local DMV or click here to register with the Iowa Donor Network. (If you live outside of Iowa click here to find your local registry) Lastly, to make a difference in this world like Ms. Richardson did, find a cause you are passionate about and volunteer! Help make this world a better place!!!

 

I heart organ donors too!!!

I don’t know if Melissa was right, yesterday, about Steve having LOTS to say… I think she spoke quite beautifully about the little project we were both involved in… And isn’t it nice to see a face and voice that goes with her picture in the left margin?  She’s right – it is an honor to be a part of a little project like this… I think we’re both proud of the result – and proud of the people involved. Scott has helped produce several very cool videos – I was in one, and many of the people here starred in Donate Life Illinois videos of their own!

And, it’s the people in this video that add so much meaning. They look like everyday people, don’t they?!?!  They are – but there is also something special about each of them that you wouldn’t know by looking at them.

One of them lost her Mom – her Mom was waiting for lungs but the lungs never came. I’d met her before, and I knew her Mom… One of them has a beautiful, new heart – you know her – she posted here yesterday… One of them lost her Dad – he needed a second liver that never came… A few of them have awesome new livers… One of them sees through another precious person’s cornea. One of them had a neighbor she grew very fond of – that neighbor became an organ donor and she witnessed the good that came of her gifts and became an outspoken supporter spreading awareness. One of them has a Mom with a new kidney… One of them has beautiful new lungs and has not shut up since he got them…

Check it out…

Scott, over at I am. Are you? posted about it yesterday, and if you’re interested, he has links to the people who played parts in this little video.

April is National Donate Life Month and this is something we all did to get that ball rolling. We’re asking, hoping, wishing that you might hop on your webcam and post us a brief video response letting us know why organ donors are important to you… If the webcam thing just kinda freaks you out (actually, it does me…)(but I might try it anyways…) then maybe just leave a comment on the YouTube video page… You can see the video in a larger, cooler format, and go to the page to leave a comment by clicking here…

Just One Donor Saved Me - I Heart Organ Donors

When I met Steve and congratulated him on being selected to ride on the Donate Life Float, I also asked, him "how did you get so involved?" Since then, Steve has brought me into his world a little bit by asking me to write here, by helping me get up the Hancock and just a few weeks ago, we spent a Saturday together with Scott over at  I Am. Are You?.  Together with others who are touch by organ donation, we took some footage for this cool video.  Check it out!

It was such an honor to be a part of this - Thanks Steve for helping me get involved.  More importantly, thanks Scott for this creative video which will compel viewers to register their decision to donate.  Spread the word about the great need for more organ donors and forward this link onto everyone you know! 

Being in this world, I'm amazed each day by the number of people I meet and hear about who need the gift of life.  It's like this - have you ever decided to buy a certain type of car, and then the instant you drive it off the lot, you see 10 other cars just like it?  I feel the same way and right now, in my rear view mirror, I see 10 people who are waiting.  Ten people that I know - who do you know?  Talk about it and in no time that list of 10 becomes bigger and bigger and then it really hits you, it's time to be an organ donor. 

Tomorrow Steve will have a lot to say about this video too so stay tuned! 

I Heart Organ Donors

Having trouble viewing this video?  Click here. Don't forget to leave a Comment or Video Comment!

Hudson's Heros

This post doesn't technically have a spin on organ and tissue donation, however, let me remind you that one of My Angel Foundation's purposes is to inspire HOPE through COMPASSION!

Just last month I had the honor of witnessing an amazing moment of compassion. Last month, Des Moines hosted it's first CureSearchwalk: "The CureSearch Walk to Conquer Kids’ Cancer is a fundraising event that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure. Its goals are to increase awareness of childhood cancer and to support the life-saving research conducted by the Children's Oncology Group.

It was expected that 500 participants would show up at Valley West Mall to support CureSearch and a goal was set forth to raise $40,000.  Quite a large goal for Des Moines' first event...I'll tell you in a bit how much they raised!

Let me introduce you to a little guy who could benefit from the research of this organization.  This is Hudson. 

He was born in October 2008 and was the perfect little boy!  At his one week check up, however, his doctors were concerned about the hardness of his forehead.  He was sent to Iowa City, where they preformed surgery to remove pressure around his brain.  It was then discovered that this little guy had a tumor growing in his brain.  Weeks later it was determined that Hudson had a rare form of brain cancer.

Looking at his picture, it's hard to tell that this precious little boy is sick, but he's had multiple rounds of chemo and has been in and out of the hospital handfuls of times.

Through it all I have been amazed with his families strength and faith! His mom does a great job updating his CarePages site and for the most part she sounds very hopeful!

Last month Hudson's parents put together a team for the CureSearch race and it was very overwhelming at the support his family received. I'm not quite sure how many supporters showed up for Hudson and his family, but if I had to guess I think it would have been well over 200!!

It was pretty emotional seeing the droves of orange shirts walking through the mall carrying posters with Hudson's picture on it.  I couldn't imagine the feelings his parents must have felt as they hugged the hundreds of people who showed their support that day!

The event was both a happy and sad day.  Many rejoiced as a group of children walked across the stage to receive medals for surviving cancer, and many mourned as the names of the children who lost their battle were read while candles were lit.

 

The grand totals that day were 1500 participants and over $110,000 in donations!!

Through it all, any one there would have had a sense of joy for celebrating the little ones who have won their battle, a sense of loss for the children who are no longer here, and a sense of HOPE for the little ones who are fighting right now and knowing they had something to do with that hope!!

Please keep Hudson and his family in your thoughts and prayers as he continues his treatments!

Smiling and crying...

In Melissa’s post yesterday, Thinking, thinking…, she spoke of joy and pain. I think it’s an unavoidable part of organ donation and transplant involving a deceased donor. One person and family had joy beyond explanation – they were watching a loved one die, but their loved one was saved, often receiving a gift at the last possible opportunity. Another family gave that gift, and may be dealing with the devastation of losing a loved one for the rest of their lives…

Too often in transplant, there is another shared joy and pain – between recipients and those waiting, and those who don’t survive the wait.

Over in the U.K. there is a very cool organization named “Life Life Then Give Life” founded by a couple of amazing girls with cystic fibrosis, Emily and Emma. (They have several other partners now…) Emily has new lungs and LLTGL has a mission to spread awareness about organ donation. On Sunday, they posted “A story to make you smile and cry.” It included a video that did what they promised.

This beautiful video is about little Bethany and her liver transplant journey. In the transplant community, we often become attached to people all over the world and follow their stories – I’ve followed Bethany’s in the past… Hers reminded me quite a bit of a beautiful, little local liver recipient named Anni. I posted about Anni getting her new liver back in October.

It’s also about Faith – a beautiful girl named Faith.

I'm not sure I resized this in the best manner possible... I'm having trouble resizing and embedding onetrue into typepad.  Check it out, it's worth a view...  You can link directly to the video here...

People involved in organ donation and transplant often form a pretty tight community – whether it’s patients, caregivers, medical folks or donor family members – and whether we’re near or far – many of us become attached to one another. Some of us never meet, but we keep one another in our hearts. And when we lose one of us, it hurts desperately. Like Bethany’s family will never forget Faith – I’ll never forget Lizzy, and so many other friends I lost waiting, or because they waited too long.

People need to know about the beautiful stories like Bethany, Anni, Melissa and me – but they need to be reminded how important organ donation is through the Faith’s and Lizzy’s of the world too… Don’t let them down.

Thinking, thinking...

So much has been going on that I don't even know where to begin!  Last week I was off line because I spent a wonderful week in Florida at the home of my lovely in-laws.  Dave and his father played in a golf tournament and we (Dave and I) talked together about what I was going to post last week.  Well, before I knew it the day was over and we were in the hot tub saying "Darn, we forgot to write!"  My apologies, I guess all of the SPF 85 soaked into my brain, giving me writers block.  A note to transplant recipients - don't be caught without full sun protection.  I use Neutrogena with helioplex because they actually have an 85 and also a 90 for the face.  In this photo I'm wearing a UV protective shirt that blocks out rays (for the photo I took of my wide brimmed hat).  Did I ever tell ya'll that I'm a prepared person?  See, told ya so.

On to more exciting news.  Today I'm going to be interviewed about my transplant experience and video taped for some Press that Northwestern is getting ready to announce!  I'm working on answers to my questions today and once I have some footage or an update, I'll let you know more.  I'm not sure what to expect but I hope to in some small way, help with their mission of saving lives, by telling them about mine.  They want me to bring a photo of Chloe which I will do and for the first time, I will be able to show it to the team who actually touched her heart and gave me my life back.  She has a really big smile and so do I, every time I think of her.

To tell you the truth, I've been thinking about her a lot.  I've been trying to write her parents back for a while now, just waiting until all of the words come at the right time and in the right way.  Their last letter was telling of how sad they are (yet the mentioned getting stronger) so - well, I'm just thinking about it at this point.  I want to tell them about the Hustle and about all the things I can do now because of them, but it's hard to be so joyful, knowning how painful life is now for them.  Again, I'll keep you posted.

Until then...I'm off but may be back on again on Friday if I have some news to report from today's video shoot! 

Happy Birthday Kari !!!

I know I’m luckier than most. And I know I’m luckier than most in so many ways… I’ve lead an amazing life. And, in this little game of life, I may have been given a tough hand to play – but I was also given so much support – so many people to help me play that hand, and even slip me an ace now and then when it looked like I was about to fold…

And then I got an incredible gift.

And again, after that gift I’ve been luckier than most. Though many of us desperately want to know about the person, and family who saved our lives, a relatively small number of recipients of these gifts ever establish contact with the families who gave them their gift. A recipient may send a thank-you letter. Sometimes, a donor family responds – more often not. There is no obligation on either side – and some may find thanking someone for a thank-you letter to be unnecessary. Yet, some donor families do reach out and I’m thankful, and lucky that Kari’s family did. I’m also glad that it looks like someday, our Melissa may meet Chloe’s family.

Beyond Kari’s family – I’ve also been lucky enough to meet many of her friends – and even luckier in that they have become my friends too. I met Alex the weekend we met Kari’s family. I met Jenn, who contributes here, four years later – and we became very close. And, more than a half-dozen of Kari's friends and volleyball teammates have repeatedly joined me in February for our climb that we do in Kari’s honor… And there are many of her friends who I’ve exchanged emails with, or “met” on Facebook, or somewhere else online…

And I’ve met people in her community – some I’ve met, and some I haven’t met physically yet, but they help me too. Tom, over at Buscher Florist in Algona used to help me – now it’s Deb over at Algona Greenhouse. Deb went to school with Kari’s Mom. Every year, she places flowers on Kari’s grave in Algona for me – on her birthday, and again on the day she passed away and gave me life – the day she gave me that incredible gift I mentioned above.

Saturday was Kari’s birthday. On Saturday, my beautiful lungs turned 26. It’s a joyous day – and a solemn day – and a day that, to me, will forever be more special than the day the rest of me was born… I always ask for colorful flowers, and butterflies – and an angel if she can find one… Deb placed my flowers, with the note I emailed her, as she’s done the past few years...

Happy Birthday Kari!!!

I got to spend time with Katie, Wendy, Alex, Kelly and Samara a few weeks ago – that nosey Katie rummaged through our videos and found a tape your Mom sent me – your junior year video yearbook. They all sat around narrating it and talking about you and them and all of your friends. I sat behind them – they couldn’t see me tearing up now and then… A week or so earlier, I “met” Tessa online. They’ll never forget you, Kari – I want to say that I’d never let them, but they don’t need me to remember you. You are in their hearts forever.

Ten years ago, every night I prayed that I could have more time with Laura. You came into my life almost nine years ago. Three days ago, Laura and I celebrated our 20th anniversary – because of you.

I got to hold your picture for five miles on a float in the Rose Parade in January!!! I got to tell so many people about you, and about what you and your family mean to me… You are on my mind always – so are your family and friends.

Love, Lungs & Laura…

Heroes and anniversaries...

Jen Johnson and her precious daughter Kelsey climbed with me a few weeks ago. I have a lot of heroes in my life – one I climb for – several I climb with. A few weeks ago I climbed with Jen and Kelsey…

I’ve known why Jen climbs and it has always touched my heart. In the video above, she tells everyone else.

A long, long time ago, I fell in love with the most beautiful girl in my world… When we started dating, we had a long talk – about my cystic fibrosis and my health… I explained that I would be very lucky to live another ten years, and that I could get a bug that could take me down in six months. That's how cystic fibrosis works.  She understood, and maybe thought the journey might be worthwhile…

Thirteen years ago, I really started to get in trouble. Twelve years ago I put her in a position where she had to save my life. For the next few years, every night in my prayers I asked not to leave her – not after she watched me go downhill for ten years – I didn’t want to just check out at my very worstest, and let that be her last memory of me. I asked to get me through this, and to give me just one good year with her…

Then, another girl came into my life – equally beautiful – a girl who is also on my mind every single day… I asked for a good year with Laura – she’s given me almost nine so far… And “good” cannot possibly describe these years – it’s not sufficient – no words are sufficient, though I tend to use an awful lot of them.

I never imagined breathing could be this amazing – I never imagined another girl, and her family and her friends, could touch my life so deeply – and let me stay here with the person, and the people I love… I wish I knew her – I wish I could give her a hug. I wish her family never had to make the decisions they made, but I’m glad they had the strength to make them. I’ve always been a happy camper. I’ve always felt a lot of love for others. But her gift has amplified everything about me. This is what organ donation does for people. And I hope I always honor her spirit and her memory.

It was twenty-three years ago that I told her I’d be very lucky to live another ten years… Yesterday, Laura and I celebrated our twentieth wedding anniversary – we’ve been together twenty-three years and she’s still the most beautiful girl in my world.

Thank you Kari. (And thank you Laura…)

"It's Kind of Like - WOW!"

In this world I live in, being a heart transplant recipient, I hear many stories of hope, many stories of loss, many stories about life.  Each one is unique and each one inspires.  The stories never get old but let me tell you just two more stories to explain my love for the Chicago Bears and how that relates to me and the gift of life.  The first story begins with my family and our roots with the team.  Dave's grandfather (Grandpa) was a generous business man and use to lend his fleet of semi-trucks to the Bears so that they could transport their equipment to away games.  The Halas family appreciated this gesture and in return personally assigned  Grandpa, 2 seat - season tickets.  It's the one valuable possession Grandpa, who now lives in Arizona, feels proud to pass on to his family.  He says it's something we'll remember him by.  And this is his legacy.  We'll also remember his big belly laugh but that story is for another time. 

The second story has allowed me to continue my admiration for the Bears by showing how they helped Charles "Peanut" Tillman through A Bears Toughest Challenge.  His young daughter needed a heart transplant this past summer and when he thinks about the gift and the donor family, he says "It's kind of like, Wow!  They did such a selfless thing."  This story appeared on NBC yesterday.   Little Tianna had dilated cardiomyopathy, just like me.  ABC picked up a similar story about the Tillman's.  A very little hero gave Tianna a very BIG gift. 

Steve loves the Bears too because of Walter Payton who spent his final months as an advocate for organ donation, appearing in many commercials to encourage others to donate organs.  Steve and I know that these efforts helped us get the gifts we needed.  Ask him about it sometime.