How boy with kidney disease became the man who brought U.S. transplant games to

[okarol]

How boy with kidney disease became the man who brought U.S. transplant games to Grand Rapids
Published: Tuesday, July 24, 2012, 7:00 AM     Updated: Tuesday, July 24, 2012, 5:38 PM
  By Sue Thoms | sthoms1@mlive.com

When the National Kidney Foundation canceled the 2012 national transplant games, T.J. Maciak began the effort to bring the games to Grand Rapids. They will take place this weekend at Grand Valley State University.
GRAND RAPIDS, MI -- Gratitude runs deep for T.J. Maciak.
He doesn’t know the name of the kidney donor who saved his life. But he wants the family of every organ donor to know what a difference their gifts made for him and for thousands of transplant recipients.
That’s why, when he heard the national transplant games would not be held this year, he picked up the game ball and ran with it. Thanks to a network of volunteers willing to work quickly, the games will go on this weekend in Grand Rapids.
The Transplant Games of America will showcase the athletic accomplishments of 1,000 transplant recipients and living donors. But its meaning goes well beyond a sporting event, Maciak said.
IF YOU GO
Transplant Games of America
The games highlight the impact of organ transplants.
When: Games start Saturday and run through Tuesday
Where: Grand Valley State University
Who: More than 1,000 transplant recipients and living donors are taking part. About 1,500 donor families and supporters also attending.
Events: 5K run, badminton, basketball, bowling, cycling, golf, racquetball, swimming, table tennis, tennis, track and field, volleyball
Host: West Michigan Sports Commission, transplantgamesofamerica.org
Organ transplant needs:
• 113,000 patients are waiting for transplants, including 1,800 children
• 28,665 organ transplants performed in 2010
SOURCE: West Michigan Sports Commission, Donate Life America
The games are like a family reunion, where transplant recipients and families of organ donors recognize the unique bonds of loss and life that unite them.
“It’s very powerful,” Maciak said. “Somebody who donated a loved one’s organs can come and see how their gifts from that person touched so many lives.
“Often times, someone who dies can affect seven or eight different people. It can make the family feel good to see a piece of their loved one living on and helping someone else.”
A transplant has made a profound difference in his life, said Maciak, 36, from Hudsonville.
He was 10 years old, growing up in Flint, when he was diagnosed with kidney disease after failing a sports physical. His scarred kidneys kept working until he was a senior in high school. He missed his last year of school while he underwent dialysis and waited for a transplant.
He received a new kidney in September 1994, at the beginning of his freshman year at Grand Valley State University. That transplant failed within a few days, and he was back on dialysis for more than a year. In January 1996, he received the kidney that is still keeping him healthy today.
In both transplant operations, the kidneys came from a deceased donor.
“I am so thankful. There are not enough words to describe how thankful I am,” Maciak said.
“Dialysis didn’t work very well for me, especially being at such a young age. Because of the choice someone made to become an organ donor, my life has been a million times better.”
Since 1996, Maciak has competed in 11 transplant games, including the national games, held in even years, and the international games, held in odd years.
The National Kidney Foundation sponsored the U.S. Transplant Games 20 years, holding them in different cities each time. But in May 2011, it announced it would not hold the event in 2012, citing financial problems.

Matt Gade | MLive.com
T.J. Maciak will compete in basketball, volleyball, bowling and a 5K run.
Maciak had long thought West Michigan would be a good spot to host the games. When he heard they were cancelled, he decided it was time to put his idea into action.
A senior programmer at the Johnson Center for Philanthropy at GVSU, Maciak began contacting everyone he knew for help. Businessman and philanthropist Peter Secchia put him in touch with the West Michigan Sports Commission, which agreed to host the games. Spectrum Health, which recently announced plans for a lung transplant program, came forward as the presenting sponsor.
Because the Kidney Foundation holds the rights to the U.S. Transplant Game trademark, the event was named the Transplant Games of America.
Although a host city usually has two years to prepare, the Grand Rapids games were pulled together in a year.
“We got all the right people together,” Maciak said. “If it weren’t for all the stars aligning, it probably wouldn’t have happened.”

Matt Gade | MLive.com
Maciak prepares for this weekend's games.
Maciak is one of the 1,000 athletes who will compete in the games. His events include basketball, volleyball, bowling and a 5K run.
The overall goal for every competition is to raise awareness about organ donation and to help the 115,000 people nationwide waiting for a transplant.
“It’s also to show that people who receive organ transplants can live good lives, very productive lives, and be a productive member of society,” Maciak said.
That’s a message he is glad to share at the transplant games in very personal way.
“I don’t know who donated their organs for me, but I get lots of people happy to see that I’m thriving,” he said. “And when I see an organ donor family, I let them know how important their gift is for everyone who receives a transplant.”
Email Sue Thoms at sthoms1@mlive.com and follow her on Twitter at twitter.com/suethoms

http://www.mlive.com/news/grand-rapids/index.ssf/2012/07/how_10-year-old_with_kidney_di.html

[jbeany]

It was a bumpy start for the volunteers at check-in.  Some of the process was a bit muddled, with packets with missing, misplaced, or misspelled names.  But except for one "vocal" man who was unhappy about some signs that accidentally didn't get put up (there's one complainer in every crowd - and of course, he's male, so he couldn't ask for directions), everyone was cheerful and happy the games are going on, and understanding about any glitches that occurred.

I checked in athletes from Connecticut, New Mexico, Michigan, Texas, West Virgina, Ohio, Pennsylvania, and many more.  I checked in the one lone member from the Northwest team.  He doesn't know how the opening ceremonies are going to look with him all by himself, but he's here to have fun anyhow!

I'm headed to the Rally for Organ Donation this afternoon.  Got some IHD flyers printed to hand out!

[cariad]

Awesome, jbeany! So we'll brace for a flood of new members then!

I have been so tempted to keep the boys out of summer program one day next week and ferry over to Michigan to meet up with you. I doubt I could justify it considering it will cost something like $400 for all of us, but then they've never been on a ferry before, might be fun. I can justify just about anything in the name of fun! Is it crowded there? Are they doing any of the events this Friday, or just closing ceremonies?

[jbeany]

Cariad, you could come and stay here - I promise I have running water and toilet that works now!  I've even got a couch and an air mattress.  We could go to Meijer Gardens and the Public Museum - I have memberships for myself and a guest, so we'd only have to pay for the kids.  It'd be fun!

We've got about 2000 athletes, plus their families, but it doesn't seem crowded compared to Art Prize - but then nothing does!

Not very many people at the rally, really, but I chatted to quite a few of them, and had a lot of fun doing it.  I think I passed out about 50 flyers, so if we get 5 newbies out of it, I'll be really pleased.  I gave some to the local nurses, so that might help, too.  The Secretary of State was set up - Michigan's new Donate Life plates will be available next month - hurray!  I'm getting some for my car.

Opening Ceremony is tonight; the games run through Tuesday, and then Closing Ceremony is Tuesday night.  I teach my craft class Tuesday, so I won't get to see the close, but I'm going Monday to see the Donate Life quilt, some of the activities, and to attend some of the workshops.

I took some pics of the rally - and the fun going on around while it was going on.  The last two shots are of the new Pub Cruiser in town.  It's a mobile bar - and the customers have to pedal it!  There was a bridal shower getting on, as another group was getting off.  The bride's maid were all wearing shirts that said "Bride's Servant."  The trolley was reloading a wedding party that had stopped for pics at the park.  Never a dull moment downtown!

[cariad]

Oh, that is such a tempting invite, jbeany! If I had had my act together the boys and I could have gone tomorrow, but this has been the most exhausting month, they need to sleep. The only time that would make sense for us to depart Milwaukee is the 6AM and I just cannot make that happen on short notice. Aidan attended his third sleepover in a row last night, and I was the last-minute hostess. Yeah, I did not have to do much and my parents helped me tidy up the house, but Elliot had to sleep in my room so he would not be kept up by the other boys. The last thing I remember is shouting from my bed "Aidan, I am serious - be quiet and go to sleep!!!!" That was around 1AM. At 5:15 AM, sure enough, the party was back in full swing.

Sooooo, I talked to Gwyn and he thinks a ferry ride before we leave the country would be fun. We'll miss the transplant games, but hopefully catch up with you which is all that really matters to us. I'll let you know if it looks like it could happen. Don't worry, we wouldn't spend the night, but I'd love to see that beautiful house of yours for myself. And hey, Gwyn has a persistent chivalrous streak so if there is any job you've got left that you just dread the thought of, I'm all for putting the boy to work! You and I can grab a beer and shout instructions at him periodically.  

Those pictures are lovely. The rally looks like it went off beautifully. All those balloons, it's downright inspiring!

[jbeany]

How about he holds the ladder for me?  I still need to change light bulbs on the motion lights over the garage to see if it even works, and I'm not crazy enough to do it without someone there to call 911.   

Seriously, I'd love to have you all come to visit!  GR is a fabulous city with lots to do.  Pity Art Prize doesn't start until the end of September!  But festivals and fun stuff is on practically a daily schedule around here. 

I got back from the opening ceremonies a little bit ago.  Wow, what a vibe in the arena!  The audience was in tears when the Donor Families came out at the end of the parade.  We've got as nearly as many donor families here as we do recipients, and a fabulously large group of living donors, too. What a roar when they came out!
The committee in charge named the Special Recognition award after TJ, and then awarded it to him, of course.  Personally, I'm not sure I'd want a trophy with my own face carved in it....

Best quote came from the twins, Anabel and Isabel Stenzel, who wrote The Power of Two, and are now in the documentary of the same name.  They both had double lung transplants, and one of their mentors told them to "Live like your donor is watching."

I took pics, but my old camera isn't really up to the task of a distant stage in the dark with lots of spot lights. 

[jbeany]

http://www.cbsnews.com/2300-204_162-10013281.html

They took much better pics than I did!