Revive Hope

Swim, Bike, Run, Chase...

Buck and Nancy raised four amazing boys – Lon, Trevor, Brandon and Chase…

At the age of 20, Chase passed away. That was five and a half years ago on Mother’s Day in 2003 – but because of what they’re doing, Chase will live forever. Chase became an organ donor – his organs saved seven lives. His brothers will save countless more.

I read about them in a post about “Tri-for-Life” that Scott over at Donate Life Illinois “I am. Are you?” wrote back in May. On their Donate Life Triathlon website, I read that they were coming to Chicago to participate in the Accenture Chicago Triathlon on August 25 – I knew I needed to meet them. I did.

Chase was an avid cyclist – one of the core disciplines in the triathlon. They do this to connect to Chase – to honor his life and the gift he’s given others, and to promote organ donation. Brandon wears Chase’s bike helmet when he races. Trevor carries Chase’s water bottle. And you can see Chase in all of their smiles.

I met them for lunch on Saturday, the day before their race. We hugged, and we shared stories – I told them about Kari, and they told me about Chase. I didn’t know their Dad and Mom, Buck & Nancy, were coming with them. It was so neat to meet them too! I had exchanged emails with Buck and Lon months earlier.  I missed meeting the recipient of Chase’ heart, Terry, the day before… I wish I would have met him. He sounds like an amazing man – thankful for an incredible gift. Before I left, after lunch, I grabbed a lady on the sidewalk to take our picture…

Lon was a little surprised to see me at 8:00 the next morning before he and Trevor started their swim – I knew I wanted to go cheer them on! Lon told me that when we left each other in front of their Hotel on Saturday afternoon – the three of them watched me walk away with tears in their eyes… They didn’t know that I was walking away with tears in my eyes too…

Brandon had a 6:04am start time on Sunday – I got home after midnight on Saturday and I knew there was no way I was getting up for that. Now I wish I would have gotten my lazy butt out of bed at 5am to see him off too! Buck, Nancy, Brandon and I were there for Lon & Trevor’s start – and to see them finish the swim – and I got to chat with Brandon, who had already finished… Brandon is a respiratory therapist – he helps people like me. He’s a very cool guy… He got two flat tires on our beautiful (but pot-holey) Lake Shore Drive, two and a half miles before the finish line – he picked up his bike and ran with it in the rest of the way! Apparently, the vans intended to rescue such situations were full – at breakfast with Buck & Nancy, his Dad said that Brandon would have run his bike in if he was ten miles out…

This is an awesome picture of Lon, Trevor, Brandon and Jerry before Brandon’s start. Jerry is a living donor kidney recipient who is also a member of the Tri-for-Life triathlon team.

They’ve met four of Chase’s recipients – one of them only by phone…  A man named Terry has Chase’s heart. The brothers went to the Transplant Olympics in Pittsburg to cheer Terry on this year… Thursday, before the race, there was a little dinner event that also focused on organ donation and the Tri-for-Life team. Lon and Terry spoke at the event and I heard from a number of people that they really moved the audience.

After breakfast with Buck & Nancy, while their sons were out racing, I had a lot of time to chat with their Mom about her boys, and about Chase… She told me so many little stories about him – about who he was, what kind of friend he was, and about the impact he had on others… He’s still having an impact in so many ways…

His mom told me of a few little interactions that, in hindsight, led her to believe that Chase might not have believed that his stay on this beautiful planet was going to be lengthy. And that it was Chase who wanted to give life to others by donating his organs – he told his loved ones “What would I need with them if I wasn’t alive?”

His Dad misses him dearly – Chase is the first thing on his mind when he wakes up in the morning and the last thing when he falls asleep. He said that after Chase passed, it caused him to question his faith… Then he told me a story…

Chase was pronounced dead at 7:10pm on Mother’s Day in 2003… At that time, there was a beautiful rainbow outside the window of Chase’s hospital room… When they met Terry, the man who received Chase’s heart, he gave them a beautiful cut-glass heart in Chase’s memory… The heart was hung from a North-facing window in their Michigan home – one that doesn’t get a whole lot of sunlight, but it’s in the room where they keep Chase’s ashes… The next Mother’s Day after meeting Terry, at 7:10pm Brandon called for his Dad to come into the room – there was sunlight coming into the window that day – it bent through the heart Terry gave them and splashed a beautiful rainbow across Chase’s ashes…

I know he misses his son as much as ever – maybe more so – but with all that has happened, he let us know that he does have his faith back. He told me that little can ease any of their pain, but what is important is what Lon, Trevor and Brandon are doing in Chase’s memory while promoting organ donation. He said, “That’s the big picture – if the Lord has given us this burden in life to carry, while his three brothers are racing towards a wonderful goal – we will carry the burden and hope our story will help someone somewhere.”

I have faith too – along with a faith that there are many families out there as truly good as the Coleman family. I think of another family every day – so many of us recipients do…

They do this in memory of Chase – and they do this to promote organ donation… That’s important enough – but it’s not just that. People like Lon, Trevor, Brandon & Jerry give hope to people waiting for organs like Terry and I did… When we hear a story like theirs – when we understand what they’re doing to honor their brother, and to promote organ donation awareness – it gives us hope and a belief that their message will reach people – and that people will understand. Waiting for an organ can be a very difficult road. A story like theirs can lift our spirits enough to keep us going for another day, another week or month. It can keep our eye on the prize. When I would hear a story like theirs, it would leave me on an emotional high for weeks. Who knows when that was just what I needed to keep on fighting and surviving – who knows how many people they’ve inspired to keep on fighting and surviving? Lon, Trevor, Brandon and Jerry will touch more lives then they will ever understand…

If you want to read more about these guys – in March 2008, there was a beautiful article in “Open Air”, a quarterly magazine insert in USA Today – you can link to it here – it’s titled, “Three Brothers, Seventeen Triathlons, One Uplifting Cause – Competing For Chase.” (Adobe pdf file) And you can contribute to their cause, and help support their goals by clicking on the “Support our Team” button on their Tri for Life Triathlon Team website.

This is a picture after the race. The guy on the left is Danny Ferrone – he has cystic fibrosis and 50% lung capacity and completed the triathlon in very good time. To the right of Danny are Lon, me, Nancy, Trevor, Buck and Brandon. Who knows – we may all help Danny get the lungs he may need someday. I have a number of other Tri for Life pictures here…

They are a few states into their 50-state goal. I got a note from Lon on Tuesday. He said, “When we find a race in Iowa – your butt is going with us. Just a little FYI.”

Just a little FYI – I wouldn’t miss that one – even if Brandon has a 6:04am start time…

Chase would be so proud of his brothers…

Olympian gets more than gold...

I stumbled across this story published on August 14, 2008 in the Biddford-Saco-Old Orchard Beach Courier. It’s titled “Olympian gets more than gold – ‘Miracle’ meeting to add to medals” (Adobe pdf file) and it was written by Gillian Graham:

Robert Juneau went to the National Kidney Foundation U.S. Transplant Games expecting to compete — not encounter a miracle.

Juneau, a double lung transplant recipient and Sanford native, traveled to Pittsburg in July for the games. There, he met the family of his donor in a chance encounter on the street — a miracle he calls an “emotional burst.”

Juneau, 38, was diagnosed with cystic fibrosis, a genetic disease that affects the lungs, pancreas and other organs, at age 2. By the time he was 10, he was bleeding from his lungs, requiring repeated stays in the hospital to receive intravenous antibiotics. The bleeding episodes escalated when he was 26 and that year he underwent a lung embolization.

Juneau then led a fairly normal life until 35 when his health began to rapidly deteriorate. Forced to stop working and wear a continuous oxygen device to aid breathing, he was considered sick enough to move near the top of a lung transplant list. Juneau said the process of being added to the list took three to four months and included a barrage of tests and psychological evaluations.

In March 2007 — 11 months after being placed on the list — Juneau was still waiting for new lungs. A table tennis player since childhood, he hadn’t played recently because of his health.

“I thought my outlook didn’t look good and I wanted to play one more time,” he said.

His wife, Mary, drove Juneau to a table tennis club near their Syracuse, N.Y., home and stood behind him while he played in case he fell. Juneau said he decided then if he ever did get a transplant he would start playing table tennis competitively again.

Ten minutes after arriving home from the club, Juneau received the call he was waiting for: a set of lungs was waiting for him at Massachusetts General Hospital.

“It was exciting and scary at the same time,” he said. “I just wanted to start living a normal life again.”

Juneau underwent a successful double lung transplant and was released from the hospital 24 days later. Back home and recovering, Juneau ordered a new table tennis paddle, despite being too weak to play for another month. When he was able to resume activity, Juneau played table tennis, walked, rode a bike and lifted weights to gain strength.

“I’m probably in the best shape of my life right now,” he said.

Juneau first heard of the July 11 through 15 transplant games from a nurse and conducted his own research about the event. Once he saw table tennis and badminton listed as events, Juneau decided to attend as part of Team Central New York. Juneau won a gold medal in table tennis and silver in badminton.

“It was exciting,” he said. “It was a huge thrill for me because I worked really hard to get there.”

It turns out the thrills didn’t end at closing ceremonies. Following the competition, Juneau and his wife headed back to their hotel. Looking for food, they walked to a local convenience store at 11:30 p.m. — only to find it closed. As they walked back into the hotel lobby, Juneau noticed a man in a Red Sox hat and New England T-shirt sitting outside with his daughter.

“I figured he was from New England, so I decided to turn around and talk to him,” Juneau said.

The man, Tim Packhem, told Juneau he was at the games with his wife, Cari, and daughter, Hannah. The Packhems had taken a bus to the wrong hotel and were looking for a cab when Juneau ran into them.

As the men continued to talk, Packhem said his 16-year-old son, Tim “Timbo” Packhem, had died the previous year in a “freak skateboarding accident.” Packhem said his son’s lungs had gone to a man in his 50s with cystic fibrosis.

At that point, Juneau began to wonder who the lungs had really gone to. Not many transplants were performed around that time and Juneau knew a man in his 50s who had a lung transplant shortly after his own — but that man did not have cystic fibrosis.

Then Packhem revealed the date his son died: March 13, 2007, the same day Juneau received the call for his transplant. Cari Packhem, Tim’s stepmother, said the recipient was actually in his 30s and started discussing a letter she received from the lung recipient’s wife, whose name she could not remember. As she recited a sentence from the letter, Mary Juneau finished it for her.

Under the most unlikely circumstances, Juneau had found his donor’s family.

“It was marvelous,” Juneau said. “Every day on the way home from work I wondered what it would be like to meet my donor family.”

The families hugged and laughed and cried, all at the same time. After a few minutes, the group moved into the hotel lobby to call Tim’s mother, Paula Packhem, who was also attending the games.

Paula Packhem was on a bus from the closing ceremonies to her hotel when she got the call. The games had been emotional for her, part of the healing process, and she burst into tears at the news. A representative from New England Organ Bank was with her and called to confirm Juneau had received Tim’s lungs.

“I could not help but think my son’s lungs are sustaining this man’s life,” Paula Packhem said. “It’s an amazing feeling.”

Juneau said word of the chance meeting spread to others at the hotel attending the games, leading to a celebration until 2:30 a.m. Juneau said organ banks generally organize meetings between donor families and recipients, a process he worried would leave him anxious.

“To have it happen this way was awesome,” he said.

The following weekend, the Juneaus traveled to Warwick, R.I., to visit the Packhem family, learn more about Tim and meet his closest friends.

Paula Packhem said her son was very gregarious and fun, extremely caring and a friend to kids who weren’t in the mainstream. She still hears stories about how Tim touched the lives of those around him.

“He was just a good, good solid young man,” she said.

Shortly before he died, Tim was looking at his mom’s license and teasing her about the “horrible” photo. He asked about the heart sign indicating she was an organ donor and then said he would also like to be a donor. The entire conversation lasted three minutes, she said.

“I knew his heart,” Paula Packhem said. “I knew that’s what he wanted to do.”

Paula Packhem said meeting Juneau and seeing his desire to know more about Tim has been a “neat” thing.

“That’s been the true light of this whole story,” she said. “He cherishes this gift and takes such good care of himself.”

Juneau said meeting Tim’s family has brought him closure. After the transplant, he wondered about the donor’s family and prayed for them each day. He said he now feels at ease because of the “miracle” of meeting Tim’s family.

“It gave me closure,” he said. “It gave me a whole new perspective on life.”

For Paula Packhem, knowing Tim’s organs have saved others also provides comfort.

“It’s truly, in the most difficult time in your life, a blessing,” she said. “There are moments when that pulls me through, to know in a big way a small part of Tim lives on.”

One Love PSA...

My buddy Scott over at I am. Are you? posted this little public service announcement about organ donation a while ago...  I liked it then and I'd forgotten about it...

A Happy Ending...or Beginning?

I just had to share this story I found in the San Francisco Chronicle!!!  It's a truly amazing love story between Carrie and Zachary with a happy ending...which is just their beginning!

Five years ago Carrie Shellhammer was dying of pulmonary hypertension and Osler-Weber-Rendu syndrome and was in dire need of a double lung transplant. As she was staying at the UCSF Medical Center, Carrie and her mother picked out the songs that they wanted to be played at her funeral.

On December 29, 2003 Carrie received two lungs and this past Saturday she was able to listen to those same songs she picked out for her funeral being played at her wedding!!

Time had almost run out for her when the organs arrived. They'd been donated by the family of Joel Hanson, a 16-year-old from Clayton fatally shot in the head. Matt Callison, who'd become friends with Carrie in the UCSF hospital - and was featured with her in a 2004 Chronicle series about transplants - received the boy's heart.

For most people, a wedding is a milestone. For anyone in the transplant field, it's also a reminder of why they do what they do.

How true is the statement above? I think a lot of "normal" people often think life will progress something like this:

• Graduate High School
• Graduate College
• Get that 1st job
• Get married
• Buy 1st house
• Have 1st, 2nd, and maybe 3rd baby
• Watch kids grow up
• Retire
• Travel around the world

Yet, for our hero's who are organ donors and for the many people waiting for life saving transplants, their list may be altered or even cut short altogether. Like the article said, a wedding for most is a milestone or a right of passage, but for Carrie and for our Ted...it's a miracle and a blessing!!

Chown said she told him about her transplant the night they met three years ago, at a Lake Tahoe beach on the Fourth of July. He was working at the marina; she had gone to see fireworks.

"Zach never batted an eyelash," recalled Carrie, who will be 31 this month. "He just took it in stride. It's scary to build a life with someone who might be gone. But he says, 'Look at what we have right now.' "

The music at the wedding included "Blackbird," "Born to Fly" and "You Can Close Your Eyes," all destined for the funeral that never was.

"There was a point where I was ready to go," Carrie said. "It was a week where I couldn't have food or water. Zach has lost one friend in a motorcycle accident. I've lost at least 20, just by knowing so many people who were sick."

An honorarium table at the outdoor wedding featured photographs of deceased friends and relatives, surrounding a portrait of Joel Hanson. Although the Lodge at Tahoe Donner was full of life Saturday, it was impossible not to think of death.

Many guests were already crying as the bridesmaids walked down a path of white rose petals, to the accompaniment of "What a Wonderful World." When Carrie finally appeared, the music switched to "At Last."

"Today, we celebrate many, many miracles - incredible generosity, faith, medical science and the fact that life always gives us second and sometimes third and fourth chances," the Rev. Michael Moran told 140 guests.

Carrie has come along ways. She's climbed mountains and ran miles, but she survived:

During an interview in Sacramento a few weeks ago, she recalled the months before and after the transplant.

"In some ways, it seems like another life. In other ways, it seems like just yesterday," Carrie said. "I'm connected to it emotionally, but I'm feeling the best I ever have."

In all this, she's never forgot the person who got her where she is today:

The other young man in her life is Joel Hanson, killed in a negligent shooting at a friend's house on Dec. 27, 2003. The shooter pleaded guilty to involuntary manslaughter with use of a gun and is serving 12 years in state prison.

"I don't ever forget that what I have is because of Joel," said Carrie, who keeps his picture amid a gallery of family photographs.

The favors at the wedding consisted of donations to a 4-H memorial fund created in his honor.

Carrie has met only Joel's sister, Jamie. It happened at a donor recognition ceremony in April 2005. They cried a lot and said almost nothing.

At the end of June, on the day of her bridal shower, Carrie wrote to Joel's mother at 1 a.m. to tell her about the upcoming wedding.

"The way I live my life is a thanks to you and Joel," she wrote.

The Hansons were acknowledged repeatedly at the wedding, where the strange mix of miracles and medicine was the main topic of conversation.

"We wouldn't be here if it weren't for the Hanson family," Carrie's best friend, Amy Bonser, told the crowd at the reception. "Not only did the Hansons save Carrie's life - they changed every one of our lives."

So many of us have been touched by people like Joel Hanson (and their families), who we will never forget.  We will never forget their selfless act of love and the courage they have shown the world. 

God Bless you Carrie and Zach on your new path, and God Bless you Hanson family for your amazing gift to Carrie and her loved ones!!

To save somebody's life...

I got a little tip about this story from a buddy at Transplant Buddies. Her name is Alina and she was impacted by a man named Anthony DeGuilio. Alina wrote a little post today titled “check this out”…

Anthony DeGuilio says he always wanted to save someone's life, but he couldn't figure out how he'd do it. Then, after watching a 60 Minutes report on live organ donors, he realized he could donate one of his kidneys.

A couple of news stories were published and broadcast yesterday about Anthony’s journey – about the little cascade of events he caused, and about the people he helped. The story was picked up by Harry Smith on CBS’ “The Early Show” and titled “How One Kidney Donation Kept On Giving” – here is a little video clip from CBS:

It was also picked up by the New York Daily News in a story by Jordan Lite titled “Good Samaritan's offer leads to 4-way kidney swap”

Living donation is such an incredibly beautiful gift. As you can see, Anthony was part of a “kidney swap” that involved eight people resulting in four people receiving kidneys. His one gift touched so many more lives than his recipient.

And I think it’s so very cool when a recipient can hug their donor and thank them. I love this picture of Barbara hugging Anthony. I know that our Ted here gets to hug his Mom and thank her… And in a very beautiful way, I get to hug Kari every time I hug one of her friends…

Anthony said he always wanted to save someone’s life. I have to imagine as this story spreads – he will save a lot more lives…

Way to go Wisconsin!!!!

In 2006 a board of National Conference of Commissioners on Uniform State Laws (NCCUSL) introduced a revision to the Uniformed Anatomical Gift Act (UAGA). "The Revised UAGA facilitates donations and modernizes the Act to reflect changes in federal law and regulations governing organ procurement and allocation as well as changes in organ donation practices. Lastly, the Act brings needed uniformity where minutes are too precious to permit wasting time deciphering divergence in state laws."--according to the NCCUSL website

Simply put, the NCCUSL wants to make the regulations of organ and tissue donation universal from state to state. This will potentially make the process easier and more uniform for the registries and procurement processes.

There are more than 25 states which currently have the (UAGA) enacted.  (These states are noted in Blue--the states noted are in Red are in the process of passing the bill). Of those states who have approved is Iowa and Wisconsin.

In my research I came across some AMAZING numbers from Wisconsin! Last Friday, August 1st Governor Jim Doyle proclaimed that 45,000 citizens of WI joined the orange "donor dot" program in the last since months.

Basically what the "donor dot" program is, when you decide to become an organ donor and register the DMV will send you an orange dot to place on your drivers license.

A local TV station, WKOW, out of Madison did a story this weekend about Governor Doyle and the orange "donor dot" program.  Click here for full story! Below I've posted a couple clips from the story:

"Wisconsin's leadership in organ donation continues to ensure a better life for hundreds of families across the state," Governor Doyle said.  "I want to thank the thousands of Wisconsin citizens who have talked to their loved ones and made an organ donation pledge.  As the need for organ donations rises, we must continue to raise awareness for this critical cause, and express our profound gratitude to the families who support their loved one's wish to give the gift of life."

In 2007, there were 225 organ donors in Wisconsin, resulting in almost 600 transplants. Today, Governor Doyle recognized these donors and presented a Governor's Gift of Life Medal to each family whose departed loved ones donated their organs last year. The need for organ donation is growing, and 1,436 patients in Wisconsin are currently on waiting lists for organs, including 28 children. Nearly 60 percent of these patients have been waiting more than one year.

Wisconsin continues to lead the nation in many areas of organ donation. In addition to the 45,000 new orange "donor dot" participants, over 50 percent of Wisconsin residents have expressed their intent to donate.

Governor Doyle urged the importance of organ and tissue donation and commended the work of the Wisconsin Donor Network and the OPOs of WI for their hard work and being recognized as a leader in the nationU.S. Department of Health and Human Service Organ Transplantation Breakthrough Collaborative for excellence in all performance areas.

Way to go Wisconsin!!! Keep up the great work.  You are definitely making a huge difference in the lives of many Wisconsin residents, and even those in surrounding states!

Light bulb, light bulb, pearls, pearls...

I found out this week that I need to practice my wave… Gift of Hope has picked me as their representative on the Donate Life Float in the Rose Parade!!! I’m so very excited – and I’m so very honored… Can you even imagine how many more people are going to know about Kari?!?!

As part of the whole exercise, along with whatever forms I need to fill out – I had to tell my story – my personal experience with donation/transplantation. And get this: IN NO MORE THAN 500 WORDS… WTF? Anyone who knows me knows my yawns are more than 500 words!!! My draft started out with about 1,200 words – I whittled it down to 670 – Laura helped me take another 172 off – and this is what I ended up with:

She was 17-years-old when she came into my life… I wouldn’t learn who she was for almost two years…

I have cystic fibrosis. All of my life I’d never really understood what it felt like to breathe “normally”. Most of my life I really didn’t understand that I was struggling. I just didn’t know any differently – that was just life to me.

I met my princess, Laura, in my mid twenties. Before that, I had had trouble with the thought of developing a relationship with someone, then leaving them alone. As I fell in love with Laura, I guess I decided that I deserved to be in love. I’m glad I did; Laura has made all of my struggles worthwhile.

I got desperately ill in 1997 – my doctor let me know it was time to consider transplant. I waited almost three years for the incredible gift I received in April 2000. My recovery was amazing and I now have a taste of life I’d never, ever understood.

I had four “false alarms” while I waited. Four times, four families, going through four devastating moments in their lives reached out and tried to save my life. On April 8, 2000, the phone rang a fifth time. A family in Iowa was experiencing the most devastating moment in their lives. But, in the month before, their precious daughter told them how strongly she felt about organ donation.

That Iowa family remained unknown to me for almost two years until I received a letter. Their daughter’s name was Kari and she was 17 when she passed. I eventually met Lisa and Larry, her mom and dad, along with her sister and brother-in-law, her grandma, and the beautiful lady who has Kari’s heart, Sandy. They are a truly beautiful family.

I never focused on my illness… I didn’t wear it like a badge… But THIS, my new lungs, I wear like a badge – I want everyone to see the gift I’ve been given and to know the girl who gave it to me…

Anyone who knows me has probably watched me pull out my wallet and show a perfect stranger a beautiful face – Kari’s – and tell them about her… They may have asked about the green ribbon on my collar, or about my IOWA shirt, and they got a story they weren’t expecting… it means so much to me to be able to tell people about Kari, and about the gift she and her family have given me – and what organ donation does for people.

One of Kari’s precious friends, Jenn, emailed me four years to the day after Kari’s death to tell me she had been running with Kari days before she died and wanted to run with Kari again. We then climbed the stairs at the John Hancock Tower together in the Hustle up the Hancock.

Jenn once told me that Lisa worries that Kari’s friends will forget about her. That won’t happen on my watch – not while I’m breathing…

(It’s 498 words…) I’ll keep you posted on things leading up to this little event!!!