Madison
Wow! What a ride this tour has been. We’ve met so many incredible people with such moving stories. Before this tour, I admittedly had no connection to organ donation. I’ve been a registered organ donor since I got my license when I was 16 and it’s always been something I strongly believed in, but still had no personal connection. I would no longer say that. I have so many connections, and they are all of you. I have been so lucky to get to travel around with this tour and meet you all and hear your stories and shake your hands. You have all overcome so much, whether it was losing a loved one and choosing to share them with others so those in need could have a second chance at life, or you yourself received that gift. The strength I’ve seen in all of you is amazing and honestly, life-changing. I wanted to take the time to thank you all for sharing your lives with me and everyone else who reads this blog. It has meant so much to me to be a part of your life even for the short time we met or talked. I have been truly moved.
Now, onto Madison’s event.
Rachel Maske spoke at the event to share her sister’s story. On Dec. 5, 2007 Rachel got a phone call she said she thought only happened in Lifetime movies. The voice on the other line told her that her sister, Becky, was in a coma. Rachel took off for Milwaukee, where Becky was in the hospital, without even knowing how to get there. Soon after arriving, Rachel and her family realized how serious Becky’s condition was.
“It became clear this wasn’t a situation that was going to end with good results, as much as we hoped it would,” said Rachel.
Less than a week after going into a coma, Becky was pronounced brain dead. It turns out she had contracted a viral infection which settled in her head.
The doctors approached Becky’s parents and asked what their wishes were on organ donation. Rachel said her parents never even hesitated. The entire family had already talked about their wishes for themselves if they were in a situation like Becky’s.
“I can’t stress how important it is to talk about donation with your family,” said Rachel. “It’s not a conversation you want to have to have at that stressful point in your life.”
Rachel said the chance to have Becky’s organs donated really helped her family keep going after losing her.
“To keep myself occupied I tried to think about what it was like for those families to hear they have an organ,” she said. “There are two families that get to spend Christmas with their loved ones.”
Rachel will be participating in this summer’s Games for the first time.
“For me the Transplant Games will be a chance to celebrate my sister Becky,” said Rachel.
Rachel and her family will also honor Becky by presenting a patch in her name to Patches of Love: The National Donor Quilt.
Next, Ali Wandschneider, a spirited 11-year-old, shared what the gift of organ donation has meant to her. Ali was born with a disease that caused her to need a new liver.
“My parents were told that someday I was going to need a transplant,” said Ali. “That day came earlier than expected.”
When Ali was three years old her life was threatened.
“But I was one of the lucky ones because my liver transplant came in time,” said Ali.
Ali went on to talk about her life since the transplant.
“I started taking pills when I was three years old,” she said. “It’s not big deal, my daddy has a harder time than I do swallowing pills.”
Ali explained how she is only 11, but her liver is 55 and that it shrank to the size of a three-year-old liver when it was transplanted and now it grows with her.
Ali will be competing in the Games this summer in the badminton and cycling events. She’s also participating in the 5 K Run/Walk for Organ, Eye and Tissue donation.
“I can’t wait,” she said about the Games. “I’m sure I’ll meet a lot of new friends.”
Ali stood on stage in a homemade t-shirt that said ‘Ali, Organ Recipient’ on the front and ‘Thanks!’ on the back.
“I’m so lucky to be here,” she said. “I want to thank Delilah, my organ donor and guardian angel. My organ donation is the best gift anyone can get. I wish more people would donate so more people can be alive.”
At the end of the ceremony, Ali and Rachel passed on the donor quilt panel to the number of representatives for the Madison area Lions Eye Bank of Wisconsin. The quilt was passed from one representative to the other, before being marched out for the last time until the Games starting in July.
Again, it has been so neat to hear your stories. I am truly inspired by all of your perseverance and never-quit attitudes.
Thanks again to all of you who have taken the time to read this blog and follow us along our tour.
I don’t necessarily want this to be the end of the blog. I will write from time to time leading up to the Games to keep everybody pumped up! :) I know I’m excited for them! So I’ll be back. Check in from time to time and I’ll update you on how things are going as we count down the days left till the Games.
See you there!
Remember, you can save lives: YESIWILLWISCONSIN.ORG
Madison Media Coverage:
WKOW: http://www.wkowtv.com/Global/story.asp?S=12700262
Channel 15: http://www.wrn.com/2010/06/organ-donation-tour-stops-in-wisconsins-capital-city/
Monday, June 28, 2010
Day 6 Legacy Tour
Milwaukee
The second-last stop on the statewide Legacy of Life Tour takes us to Milwaukee. The event was at Discovery World at Pier Wisconsin. The building overlooks Lake Michigan. It was a great location for Milwaukee’s event!
At the event, Janel Lang shared her family’s multiple connections to organ donation.
In Sept. of 2007, Janel Lang waited for a kidney and liver transplant. In the hospital she weighed only 70 pounds. Toxins were building up in her body, and she had to undergo several belly taps to drain the fluid and dialysis to cleanse her blood. The entire time her husband, two kids, relatives and friends made a point to never let Janel wait alone. Someone was always by her side helping her through. Friends sent cards and even cooked meals, anything they could do to help out Janel and her family.
In a story of the experience, written by Janels’ sister-in-law’s partner, Mari, Mari said, “How does one pray for an organ when you know if you prayers are answered that means some other family is in crisis.”
It was, as I’m sure you can imagine, an incredibly difficult time. But on Sept. 24, Janel’s daughter Abby’s birthday, Janel got the call that they had the organs for her. After four months in the hospital and four other false alarms, Janel went into surgery and it was a success!
Janel is now training for a running event at the 2010 U.S. Transplant Games in Madison this summer!
But the Lang family’s story of organ donation doesn’t end there. In June of 2008, Lori Lang, who had been at Janel’s side through her entire transplant experience, even cooking for the staff at Froedtert Hospital where Janel was staying, had a brain aneurysm, and was taken from the Langs at age 43.
In Mari’s written story she remembers Lori as, “full of smiles, spontaneity, support and laughter.”
Lori is now the Lang family’s angel. On June 8th,the family said goodbye to Lori and doctors approached her husband, Dan, asking about organ donation. He didn’t think twice.
“After seeing Janel wait and wait and wait, there was an unspoken understanding and support of organ donation so that no other family would have to agonize over a loved one’s wait on a list,” Mari recalled in her story.
But the Lang family would have yet another organ donation experience. Jodi, Janel’s sister-in-law, had a friend of 25 years in need of a kidney. Jodi right away went to get screened to see if she was a match. She insisted to her friend Kathy not to worry because she knew she would be a match. She was! Jodi gave her friend Kathy her own kidney. The surgery was a success and they are both happy and healthy.
The Lang family’s story is an incredible one of courage, loss, strength and selflessness.
Janel Lang helped present the representatives from the Lions Eye Bank with the next panel in the Paths of Love Donor Quilt.
The event was another success, filled with inspiration and accomplishment.
(Thank you to both Janel and Mari for sharing Mari’s written story with us. I was unable to attend this event, and much of my blog came from Mari’s story. Thanks for sending the story to us Janel, and thank you, Mari for writing it and sharing it.)
The next event is in Madison Wednesday, June 23rd at the Monona Terrace Convention Center! Hope you can come! See you there!
Remember: if you haven’t registered on the on-line donor registry, the site is YESIWILLWISCONSIN.ORG! Sign up and share your wishes with your loved ones!
The second-last stop on the statewide Legacy of Life Tour takes us to Milwaukee. The event was at Discovery World at Pier Wisconsin. The building overlooks Lake Michigan. It was a great location for Milwaukee’s event!
At the event, Janel Lang shared her family’s multiple connections to organ donation.
In Sept. of 2007, Janel Lang waited for a kidney and liver transplant. In the hospital she weighed only 70 pounds. Toxins were building up in her body, and she had to undergo several belly taps to drain the fluid and dialysis to cleanse her blood. The entire time her husband, two kids, relatives and friends made a point to never let Janel wait alone. Someone was always by her side helping her through. Friends sent cards and even cooked meals, anything they could do to help out Janel and her family.
In a story of the experience, written by Janels’ sister-in-law’s partner, Mari, Mari said, “How does one pray for an organ when you know if you prayers are answered that means some other family is in crisis.”
It was, as I’m sure you can imagine, an incredibly difficult time. But on Sept. 24, Janel’s daughter Abby’s birthday, Janel got the call that they had the organs for her. After four months in the hospital and four other false alarms, Janel went into surgery and it was a success!
Janel is now training for a running event at the 2010 U.S. Transplant Games in Madison this summer!
But the Lang family’s story of organ donation doesn’t end there. In June of 2008, Lori Lang, who had been at Janel’s side through her entire transplant experience, even cooking for the staff at Froedtert Hospital where Janel was staying, had a brain aneurysm, and was taken from the Langs at age 43.
In Mari’s written story she remembers Lori as, “full of smiles, spontaneity, support and laughter.”
Lori is now the Lang family’s angel. On June 8th,the family said goodbye to Lori and doctors approached her husband, Dan, asking about organ donation. He didn’t think twice.
“After seeing Janel wait and wait and wait, there was an unspoken understanding and support of organ donation so that no other family would have to agonize over a loved one’s wait on a list,” Mari recalled in her story.
But the Lang family would have yet another organ donation experience. Jodi, Janel’s sister-in-law, had a friend of 25 years in need of a kidney. Jodi right away went to get screened to see if she was a match. She insisted to her friend Kathy not to worry because she knew she would be a match. She was! Jodi gave her friend Kathy her own kidney. The surgery was a success and they are both happy and healthy.
The Lang family’s story is an incredible one of courage, loss, strength and selflessness.
Janel Lang helped present the representatives from the Lions Eye Bank with the next panel in the Paths of Love Donor Quilt.
The event was another success, filled with inspiration and accomplishment.
(Thank you to both Janel and Mari for sharing Mari’s written story with us. I was unable to attend this event, and much of my blog came from Mari’s story. Thanks for sending the story to us Janel, and thank you, Mari for writing it and sharing it.)
The next event is in Madison Wednesday, June 23rd at the Monona Terrace Convention Center! Hope you can come! See you there!
Remember: if you haven’t registered on the on-line donor registry, the site is YESIWILLWISCONSIN.ORG! Sign up and share your wishes with your loved ones!
Wednesday, June 16, 2010
Day 5 of Legacy Tour
Janesville
In Janesville, we met a lot of Team Wisconsin members. We had young and old members meet up with us, some to share their stories, some to thank a donor family that was there and others just to talk to someone who had a similar experience.
The parents of Hailey Rath spoke about the loss of their daughter, but the comfort the opportunity to donate Hailey’s organs has been. On Dec. 10, 2005 Hailey was in a crash leaving her with significant head trauma. When the nurse at the hospital Hailey was taken to entered the critical care unit she politely asked if Hailey’s parents, Jeff and Lisa Rath, were organ donors. They explained they were and the nurse asked if they wanted Hailey’s organs donated.
“It was a very difficult decision,” said Lisa Rath. “Because that meant we were letting Hailey go.”
Hailey’s parents remember her love for animals and people and her big heart.
That heart went to a girl Hailey’s age in Michigan. A girl who, this year, was able to graduate because of the gift Hailey gave to her. A white rose sat on Hailey’s chair at her own graduation this year, placed there by her brother.
Hailey’s kidneys and liver stayed in Wisconsin, and her tissue touched the lives of 72 other people in need.
“It helps us in the grieving process, knowing what an impact our daughter has had,” said Jeff. “Life is a precious thing, not only to lose, but to pass on… It’s a tough thing, it’s a great thing, living everyday knowing Hailey has touched so many lives and saved three.”
Kaitlyn Simpson knows how precious the gift of a heart can be, she received one, twice. When Simpson was born she was missing the right side of her heart. In the hospital she slept 22 hours a day until she was 9 weeks old when she received a new heart. Things were going well, until she was four and a tooth infection attacked her immune system and then her heart. Simpson was back on a waiting list again. This time she waited six months. Now, her second gift of life is beating just fine.
“There’s nothing I can’t do,” said 12-year-old Simpson, standing in front of the crowd with a smile on her face and her mom and sisters cheering her on.
But Simpson’s story doesn’t end there.
“Life is so very precious,” she said. “I like to make a difference.”
So that’s exactly what she’s doing. Simpson takes photos of animals and sells them, raising money to vest police dogs. She has already vested two k-9 dogs and is working on her third. The vests cost more than $800 each.
With that, Simpson encouraged everyone in the crowd to make a difference too.
“Everyone here can make a difference as well,” she said. “You can choose to be an organ donor.”
After her speech, a number of people signed up on the online donor registry at the computer kiosks set up in the conference room of the Hedburg Public Library. (YesIWillWisconsin.org)
Also watching Simpson speak was kidney transplant recipient Ruth Armstrong. Armstrong received a kidney from her own daughter, who refused to accept the ‘no cure’ diagnosis her mother received more than two years ago.
“Hearing that I had a kidney disease with no cure it was like ‘Are you talking to me?!’” remembered Armstrong.
Armstrong’s daughter, a nurse, went online and found out her mom could live if she received a kidney. In March 2008, she gave her mother that gift.
“It was wonderful,” said Armstrong. “ I woke up and the fog was gone. My granddaughter was holding my hand, my daughter already walking down to the room saying, ‘Let’s go mom. Let’s go walking.’”
Armstrong said her already close relationship with her daughter is now even closer.
“We’re real buds,” she said.
And her family has learned to not take time for granted.
“I think the whole family, we live each day, we try to have fun each day.”
Armstrong is training to do the biking events in this summer’s Games.
Other team Wisconsin members at the event were Kellen, who received a kidney from his dad and will be swimming in the Games, Zachary who lifted his arms up in celebration as everyone in the room cheered, hearing he is a double lung, heart recipient all when he was only 22 months old and Wil, a kidney recipient who will be biking in the Games for his second time.
The Team Wisconsin members presented the Lion’s Eye Bank representatives with a panel of the donor quilt.
“It’s a really great project because Helen Keller asked us to be knights to the blind and I think this is a true knights to the blind project,” said Daryl Porter, Chairman of the Beloit Noon Lions.
Day 4 of Legacy Tour
Kenosha
In Kenosha, Kathy Vilski took the stand to share her experience as a kidney recipient. When Vilski was only three years old she became sick with strep throat, which ultimately landed an infection on her kidneys leaving her with kidney disease. The problems in her kidneys grew from acute to chronic. From that time until she was almost 20, Vilski was on a salt-free diet and under close medical supervision, yet, she said, she still lead a pretty normal life for a kid her age.
That ‘normal life’ changed when she was in her late twenties and, as she said ‘the balance sort of tipped.’ The kidney disease caused scarring in her kidneys over the years, and now that build up of scar tissue began to overwhelm the good tissue and her kidney function dropped off.
At that point in time, Vilski went on dialysis twice a week. In 1975, Vilski was all set to have her spleen removed, which she said, is what doctors often did back then, but on September 17th, just months before the operation would take place, she was told doctors found a new kidney for her. She later found out, doctors had only just approved her for the donor waiting list the day before. She called it a miracle that things worked out this way.
“A day earlier or a day later and I would not have gotten the kidney,” she said. Her new kidney, a better match than her own mother’s, came from a deceased donor, who she believes was from the Kenosha area.
Vilski remained in the hospital for seven weeks after the transplant. When she was healed, she returned to teaching. Vilski has now been retired for 25 years.
“It’s been a wonderful experience,” said Vilski. “I just feel very blessed because I was able to teach all those years and, I hope, influence some lives there in some small way.”
She and her husband spend their time together traveling and attending concerts and plays.
This September it will have been 35 years since she received her gift of a kidney. She and her family are planning a party for the anniversary. That is, after Vilski competes in her first ever Transplant Games! She’s planning on swimming some of the individual races and said if she can she wants to also join in the 5k Run/Walk for Organ, Tissue and Eye Donation with the community on July 31st at 9:00 a.m. at the Capitol Square.
Wendy Healy also shared her son’s donor story. Healy’s son Merritt died in a motorcycle crash only days after discussing his desire to be an organ donor with his mom.
Because of the crash, Merritt’s organs could not be donated, but his tissue could be. That tissue touched the lives of 72 people. A final act of kindness by Merritt from the son Healy calls ‘wonderful.’
“Now, 72 people have better lives,” Healy said. “My son didn’t die for nothing.”
Just a reminder, if you haven’t signed up online to be a donor, the Web site is YesIWillWisconsin.com. Having a dot on your driver’s license isn’t enough anymore. The online registry is legally binding. All you need to sign up is a driver’s license or state ID. There is also no age cap on the registry, in other words, you can’t be too old to sign up. :)
Links to media coverage:
http://www.kenoshanews.com/scripts/edoris/edoris.dll?tem=lsearchart&search_iddoc=9115709
In Kenosha, Kathy Vilski took the stand to share her experience as a kidney recipient. When Vilski was only three years old she became sick with strep throat, which ultimately landed an infection on her kidneys leaving her with kidney disease. The problems in her kidneys grew from acute to chronic. From that time until she was almost 20, Vilski was on a salt-free diet and under close medical supervision, yet, she said, she still lead a pretty normal life for a kid her age.
That ‘normal life’ changed when she was in her late twenties and, as she said ‘the balance sort of tipped.’ The kidney disease caused scarring in her kidneys over the years, and now that build up of scar tissue began to overwhelm the good tissue and her kidney function dropped off.
At that point in time, Vilski went on dialysis twice a week. In 1975, Vilski was all set to have her spleen removed, which she said, is what doctors often did back then, but on September 17th, just months before the operation would take place, she was told doctors found a new kidney for her. She later found out, doctors had only just approved her for the donor waiting list the day before. She called it a miracle that things worked out this way.
“A day earlier or a day later and I would not have gotten the kidney,” she said. Her new kidney, a better match than her own mother’s, came from a deceased donor, who she believes was from the Kenosha area.
Vilski remained in the hospital for seven weeks after the transplant. When she was healed, she returned to teaching. Vilski has now been retired for 25 years.
“It’s been a wonderful experience,” said Vilski. “I just feel very blessed because I was able to teach all those years and, I hope, influence some lives there in some small way.”
She and her husband spend their time together traveling and attending concerts and plays.
This September it will have been 35 years since she received her gift of a kidney. She and her family are planning a party for the anniversary. That is, after Vilski competes in her first ever Transplant Games! She’s planning on swimming some of the individual races and said if she can she wants to also join in the 5k Run/Walk for Organ, Tissue and Eye Donation with the community on July 31st at 9:00 a.m. at the Capitol Square.
Wendy Healy also shared her son’s donor story. Healy’s son Merritt died in a motorcycle crash only days after discussing his desire to be an organ donor with his mom.
Because of the crash, Merritt’s organs could not be donated, but his tissue could be. That tissue touched the lives of 72 people. A final act of kindness by Merritt from the son Healy calls ‘wonderful.’
“Now, 72 people have better lives,” Healy said. “My son didn’t die for nothing.”
Just a reminder, if you haven’t signed up online to be a donor, the Web site is YesIWillWisconsin.com. Having a dot on your driver’s license isn’t enough anymore. The online registry is legally binding. All you need to sign up is a driver’s license or state ID. There is also no age cap on the registry, in other words, you can’t be too old to sign up. :)
Links to media coverage:
http://www.kenoshanews.com/scripts/edoris/edoris.dll?tem=lsearchart&search_iddoc=9115709
Thursday, June 10, 2010
Day 3 of Legacy Tour
Green Bay
As the tour rolls on, Green Bay becomes the next host city. The tour stopped at the Bay Park Square Mall to hear more stories of life-saving gifts and life-changing decisions. Hillary Sweere shared her son, Rece’s, story. When he was only three days old, Rece needed a new heart. Sweere said it was a very difficult time and she was fearful an organ wouldn’t come in time for her son. But eight days later, he was given a new heart. She said the family tried to stay optimistic the entire time, because it was the only way they could get through it. Rece stood by her side today while she spoke at the event.
A picture of Teresa Paulus' son, Brian, stood by her side in Green Bay as she shared his story. Brian was only three years old when he drowned while camping. It happened 15 years ago. Brian’s mother pointed out he would have been graduating high school this year.
“I can’t go to his graduation,” she said. “But I can tell everybody about Brian and what a great boy he was and how proud we are of him.” Brian’s family chose to donate his organs. His eyes and heart valves gave others a second chance.
“Brian didn’t have a choice to live,” Paulus said. “But we had the chance to donate to help other children live.”
For the 15 years since Brian’s death, Teresa has been spreading the word on the importance of organ donation. She calls the work her passion.
“Donation is a good thing for families left behind,” said Paulus.
Other Team Wisconsin members who stopped by took turns telling stories as well. I’m not able to fit everyone’s stories in here, so like I said in my introductory blog, feel free to share your stories on the comment board for this blog. I think it would be really neat for this to become a collection of stories of triumph, perseverance, hardship and healing. Whatever your connection may be to organ donation, the Games or anyone I mention in the blogs feel free to share. Even if it’s just that you yourself are a registered organ donor, or you think the Transplant Games sound fun, everyone is welcome here.
Links to media coverage:
WFRV-TV
http://www.wfrv.com/news/local/96099689.html
WBAY-TV
http://www.wbay.com/Global/story.asp?S=12630843
Appleton
Right next door to Green Bay, Appleton became the next site for the Legacy of Life Tour. The event was held at the Paper Discovery Center, a really neat place that you can actually take tours of, which seem pretty interesting.
Teresa Paulus traveled to Appleton after Green Bay and again told the story of her son Brian and the choice she made to donate his organs after he passed away at the age of three.
Anne Grahl was also at the event with her seven-year-old son Mason. Mason and his mom will be going to the Games at the end of July for Mason to compete! He received a kidney donation from his own mother about four years ago.
Links to media coverage:
WHBY-AM 1150
Wednesday, June 9, 2010
Day 2 of Legacy Tour - Marshfield
Next dot on the map, Marshfield! We set up shop at the YMCA in Marshfield and again had computers up for anyone to sign up for the online donor registry. Just in case you’re reading this and want to join it, the web site is www.YesIWillWisconsin.com . One of the really neat people I met at the Marshfield event was Richard Koch. Koch is on the Board of Directors for the Lions Eye Bank of WI (LEBW) and one of the FIRST to sign up on the online registry. He said he knew it was coming out because of a press conference he had been informed about, so back in March he kept checking online to see if it was a go yet. The first day it was up he happened to be checking, saw it, grabbed his driver’s license (all you need to sign up) and got in on the online registry. Koch said his wife’s sister was an organ donor and just two years ago his cousin received a kidney transplant, both of those things, along with being part of the LEBW, have made him very aware of the importance of organ donation.
“It’s important to sign up on the online registry because there’s a long list of people waiting for organ donations,” said Koch. “And there are a lot of people on that list that never get an organ because there aren’t enough. Being on the online registry makes it easier for family in a hard time so they don’t’ have to make the decision of whether or not to have their loved one’s organs donated on their own.”
I included a picture of Koch at the computer showing me how he signed up back in March.
Another very sweet person we met in Marshfield was Bill Reigel. Reigel had a heart attack back in July of 1979 when he was only 40 years old. After the heart attack he recovered and was doing well, but then went into cardiac arrest in an airport in New York when he was leaving a convention in 1987. He told me that from then on his heart just kept getting worse so he got moved up on the list. On May 12 1992, his deceased father’s birthday no less, he received a working heart.
“It has been an awesome experience,” said Reigel. “I have seen my family grow.”
Two weeks ago he and his wife celebrated their 50th wedding anniversary! Congrats to both you and your wife, Bill! :)
There was no donor family member to speak at this event, but the quilt panel on display did have a patch recognizing a Marshfield native, Kristina Jane Marty. Marty was 16 when she passed away.
Her patch says, “We loved her so much but God loved and wanted her more.”
I included a picture of Kristina’s patch.
I also have a picture of Reigel presenting an LEBW member with another panel of the quilt.
Links to media coverage:
Marshfield News Herald
http://www.marshfieldnewsherald.com/apps/pbcs.dll/article?AID=20106100396
This marks the end of the fourth event! June 10th the Legacy Tour will be in Green Bay and Appleton. If you’re in the area I hope you can join up with the tour for the day!
A lot of Team Wisconsin members have used these events to get hooked up with other team members in the area. In Wausau team members exchanged contact information and were planning a time to get together so if you can make it to one of the tour’s in your area it would be really fun to get team groups together!
Here’s the rest of the schedule in case you haven’t seen it:
Thursday, June 10th - Green Bay and Appleton
Monday, June 14th - Kenosha
Tuesday, June 15th – Janesville
Tuesday, June 22nd - Milwaukee
Wednesday, June 23rd - Madison
Day 2 of Legacy Tour - Wausau
As the Legacy Tour continues, we made a stop in Wausau at the Marathon County Public Library. There were lots of folks from the Lions Eye Bank of Wisconsin as well as members of Team Wisconsin that met up with us there. Each shared their stories, like Alex who had a double lung transplant when he was 11, Ted Gerbig who also had a lung transplant and now works with Donate Life and coordinates group events with Wausau area transplant recipients, and a number of other recipients were at the event as well. Lee Belmas spoke at the event as a recipient. He was diagnosed with Primary Sclerosing Cholangitis (PSC) years ago. For those of you out there like me, who had no idea what this was, Belmas explained to me that it is a disease that eventually turns into cancer, “a ‘when’, not an ‘if’” as he told me. In October of 2006 doctors found a tumor on his liver. He began chemo and radiation. But when Belmas got an infection in his blood he had to be transported to a Madison hospital, and after an exploratory surgery, which found the cancer was confined to his liver making a transplant a possibility, he was put on the waiting list to receive a new liver. Just three weeks after being put on the list, Jan. 31, 2007 he was given that gift. His family got to share the birth of two of his grandchildren with him. Belmas was also there for his son’s wedding, major events he likely would not have been a part of without a transplant. Belmas has written his donor family but never received an answer. He said if he did get to speak with them he would want to say, “Thank you for sharing your loved one with me and giving me a second chance at life. You’ll forever be in my heart.”
Cindy Geiss also spoke at the event to share her family’s experience with organ donation. Geiss’ husband, Gordy Miller, died from an aneurysm and because his family knew his wishes to be an organ donor, they were able to make that decision easier at such a hard time.
“It’s important to communicate with your family on your wishes,” she said.
Geiss and Belmas both presented a panel from Patches of Love: The National Donor Quilt to the Lions Eye Bank of Wisconsin. I included a picture of the presentation with this blog.
I also am including a picture of the transplant recipients from the Wausau area standing with Geiss by the quilt. From left to right is Ted Gerbig, Alex (I’m sorry Alex I misplaced your last name), Cindy Geiss, Lee Belmas and Alex’s dad.
Links to media coverage:
Tuesday, June 8, 2010
Legacy of Life Tour - Day 1
Hey Team Wisconsin and Friends,
The first event in our legacy tour was a success! To begin the day, we set up in Eau Claire at Borders bookstore. We met members of Team Wisconsin as well as representatives of Lions Eye Bank of Wisconsin who are transporting the donor quilt along the way on our Legacy Tour.
Josh Bergeron introduced himself to us at the event. At the age of 14 he noticed something was wrong while playing basketball. After only ten minutes of playing, he was exhausted. Doctors quickly determined it was his heart and put him on the waiting list for a new one. Doctors told Bergeron if he didn’t receive a heart transplant, he had only three months to live. Two months later in April of 1999, Bergeron was given a new heart. Bergeron got back into athletics and still trains year-round. He even won a gold medal in track at the World Transplant Games in Australia. Bergeron is part of Team Wisconsin and will be competing at this summer’s Games in Madison. Bergeron is so grateful for the choice his donor made and stresses the need for more donors.
"All over Wisconsin and actually, all over the world, we need donors because if I wouldn't have gotten my heart when I did, the doctor was prepared to tell us that I had three months to live," said Bergeron.
Links to media coverage:
WQOW in Eau Claire
http://www.wqow.com/Global/story.asp?S=12617172
Our next stop was La Crosse where we met two women, one who’s husband donated his organs and the other received a life-saving gift from another stranger.
Debbie Morovits shared with us the story of her husband, Dennis, who died in a crash while riding his moped. Dennis was transported to the hospital and given a 1% chance to live.
“There was no doubt in my mind that if Dennis could be a donor that's what the boys and I wanted,” said Morovits. “He became a kidney donor for 2 Wisconsin patients that suffered from end- stage kidney failure, whom we have met and will be at the Transplant Games in Madison. He helped 37 people, through the gift of donated bone and soft tissue, ages ranging from 9-80 and we have been told the bone grafts were sent for transplant in 28 different states. He also donated both eyes.”
Morovits said Dennis filled his time in life by doing kind acts for others.
“He did in death what he did in life, he did a kind act for someone that needed him.”
Morovits shared her family’s story, and organ recipients thanked her for the choice her family made. She presented the representatives of Lions Eye Bank of Wisconsin with the donor quilt to be carried on to the next stop on the Legacy Tour.
Next, Betsy Klein shared her story and what it meant to her that her donor made the same choice Dennis did and what she’s been able to do with her life because of that choice. Klein, received her liver transplant when she was 34. After receiving a new liver, Klein went on to finish college and now helps out with Hospitality House for her church, a place outpatients or family members of those staying in the La Crosse hospitals can call home for a while.
Klein is incredibly grateful for the gift of life she received years ago.
“While this is an experience that I would not wish on anyone including my worst enemy I would go through it again in a heartbeat because it has made me the person that I am today and has given me a new appreciation for life and for each new day that I have been given,” she said.
It was an inspiring day filled with gratitude and triumph. A great end to the first day of our exciting tour!
Links to media coverage:
La Crosse Tribune
http://lacrossetribune.com/news/local/article_cb0e9e04-7375-11df-a547-001cc4c002e0.html
The first event in our legacy tour was a success! To begin the day, we set up in Eau Claire at Borders bookstore. We met members of Team Wisconsin as well as representatives of Lions Eye Bank of Wisconsin who are transporting the donor quilt along the way on our Legacy Tour.
Josh Bergeron introduced himself to us at the event. At the age of 14 he noticed something was wrong while playing basketball. After only ten minutes of playing, he was exhausted. Doctors quickly determined it was his heart and put him on the waiting list for a new one. Doctors told Bergeron if he didn’t receive a heart transplant, he had only three months to live. Two months later in April of 1999, Bergeron was given a new heart. Bergeron got back into athletics and still trains year-round. He even won a gold medal in track at the World Transplant Games in Australia. Bergeron is part of Team Wisconsin and will be competing at this summer’s Games in Madison. Bergeron is so grateful for the choice his donor made and stresses the need for more donors.
"All over Wisconsin and actually, all over the world, we need donors because if I wouldn't have gotten my heart when I did, the doctor was prepared to tell us that I had three months to live," said Bergeron.
Links to media coverage:
WQOW in Eau Claire
http://www.wqow.com/Global/story.asp?S=12617172
Our next stop was La Crosse where we met two women, one who’s husband donated his organs and the other received a life-saving gift from another stranger.
Debbie Morovits shared with us the story of her husband, Dennis, who died in a crash while riding his moped. Dennis was transported to the hospital and given a 1% chance to live.
“There was no doubt in my mind that if Dennis could be a donor that's what the boys and I wanted,” said Morovits. “He became a kidney donor for 2 Wisconsin patients that suffered from end- stage kidney failure, whom we have met and will be at the Transplant Games in Madison. He helped 37 people, through the gift of donated bone and soft tissue, ages ranging from 9-80 and we have been told the bone grafts were sent for transplant in 28 different states. He also donated both eyes.”
Morovits said Dennis filled his time in life by doing kind acts for others.
“He did in death what he did in life, he did a kind act for someone that needed him.”
Morovits shared her family’s story, and organ recipients thanked her for the choice her family made. She presented the representatives of Lions Eye Bank of Wisconsin with the donor quilt to be carried on to the next stop on the Legacy Tour.
Next, Betsy Klein shared her story and what it meant to her that her donor made the same choice Dennis did and what she’s been able to do with her life because of that choice. Klein, received her liver transplant when she was 34. After receiving a new liver, Klein went on to finish college and now helps out with Hospitality House for her church, a place outpatients or family members of those staying in the La Crosse hospitals can call home for a while.
Klein is incredibly grateful for the gift of life she received years ago.
“While this is an experience that I would not wish on anyone including my worst enemy I would go through it again in a heartbeat because it has made me the person that I am today and has given me a new appreciation for life and for each new day that I have been given,” she said.
It was an inspiring day filled with gratitude and triumph. A great end to the first day of our exciting tour!
Links to media coverage:
La Crosse Tribune
http://lacrossetribune.com/news/local/article_cb0e9e04-7375-11df-a547-001cc4c002e0.html
Introductions
Hello Team Wisconsin and Friends,
My name is Emily Rohloff and I am a volunteer with the 2010 National Kidney Foundation U.S. Transplant GamesR. I am going to be blogging from now through the event, bringing you stories of inspiration, perseverance and triumph from donor family members, living donors, transplant recipients, volunteers and friends all touched by these life-saving gifts. I am very excited to get started and hope that no matter where you are or what you're up to in these last eight weeks before the Games, you'll take some time out of your busy schedule to join me in sharing this experience.
As you may or may not know, there will be a Legacy Tour throughout Wisconsin, starting today, June 8th, leading up to the Games. We'll be traveling to various cities throughout the state showcasing panels of Patches of Love: The National Donor Quilt. In each city on our tour we'll hear from donor family members and recipients. They'll share their stories and we'll pay tribute to the one or more Wisconsin donors represented on the quilt panel.
Now, since we can't all make it to each stop on the statewide tour, I'll be keeping everyone updated on the events. Think of me as your online tour guide for the Legacy Tour. I'll keep us all in the loop on who spoke at the event, share a little of their story, as well as links to media coverage.
You'll be able to find my blog on the National Kidney Foundation of Wisconsin's site (link below). Along with my blog, I'll be adding inspirational quotes from our speakers to Team Wisconsin's Twitter account, @teamwi.
Feel free to share my blog with your family and friends, the more people we can spread the word to about the Games and the importance of organ, tissue and eye donation the better. Also, let's have fun with it. If you have a story to share you can leave a comment on this blog or on our Facebook page (link below).
Another thing to keep in mind: If you want to get involved in the Games there's still time to join the 5K Run/Walk for Organ, Tissue and Eye Donation that will be held on Saturday, July 31 at 9:00 am. The entire community is invited! Go to www.YesIWillWisconsin.com and click on the run/walk dot.
Together let's help end the wait for the 107,000 men, women and children in the U.S. who are waiting to receive a life-saving organ transplant.
LINKS:
National Kidney Foundation of Wisconsin
Team Wisconsin Facebook Page:
http://www.facebook.com/group.php?gid=60991476210
Follow Team Wisconsin on Twitter @teamwi
Sunday, June 6, 2010
S.T.E.P.S. for Life a success!
The first annual S.T.E.P.S. for Life Walk was a success with a great turnout and great weather! Learn more about the organizers in this story from the Kenosha News.
http://www.kenoshanews.com/news/woman_steps_up_for_brother_8055736.html
http://www.kenoshanews.com/news/woman_steps_up_for_brother_8055736.html
Friday, June 4, 2010
COUNTDOWN BEGINS TO 2010 NATIONAL KIDNEY FOUNDATION U.S. TRANPSLANT GAMES®
(June 3, 2010 – Madison, WI) In less than 60 days, an expected 7,500 visitors from across the country will arrive in Wisconsin to participate in the 2010 U.S. Transplant Games. The Legacy of Life Tour, a statewide tour that will visit 10 cities, officially kicks off the countdown to the Games.
The Legacy Tour acts as a lead-in to the Games, and features a series of community events around the state that will recognize local transplant recipients, living donors and donor families attending the Games as members of Team Wisconsin. In addition, each of the events will include a special presentation of a panel from Patches of Love: The National Donor Quilt.
“Through the Legacy of Life Tour, Wisconsin citizens will be able to witness first-hand the success of transplantation and the life-saving nature of organ and tissue donation within their own communities,” said Cindy Huber, CEO of the National Kidney Foundation of Wisconsin, who is organizing the Legacy Tour.
The U.S. Transplant Games, which come to Madison July 30-August 4, are an Olympic-style event for athletes who have received a life-saving organ transplant of any type (kidney, liver, heart, lung, pancreas and bone marrow). Transplant athletes of all ages will compete for gold, silver and bronze medals in 12 different sports including 5K run/walk, badminton, singles and doubles bowling, basketball, cycling, golf, swimming, singles and doubles tennis, track and field and volleyball.
Special events honoring living and deceased donors are highlights of the Games, as are the Opening and Closing Ceremonies. Presented biennially since 1990 by the National Kidney Foundation, the Games draw participants from across the country who are organized into state teams.
Team Wisconsin boasts more than 600 members, followed by Team Philadelphia with 300 members. More than 1,500 transplant recipient athletes are expected to attend the Games which will bring an estimated economic impact of more than $2.55 million.
The Games are not only for members of the transplant and donation community and are not just another event in Wisconsin. “Even if you don’t have a personal connection to donation, participating in the Games in some way will change you profoundly,” said Krista Flanagan, co-chair of the Games Organizing Committee, noting that more than 1,200 volunteers are needed for the Games and the community is invited to participate in the Games 5K Run/Walk.
Echoing that sentiment is Trey Schwab, a double-lung transplant recipient himself who is the Outreach Coordinator for the UW Health Organ Procurement Organization and also co-chair of the Games Organizing Committee, “I encourage everyone to volunteer for the Games, participate in the 5K and/or attend the Games Opening and Closing Ceremonies.” He added, “At no other event have I ever witnessed such a sense of community, encouragement and just an overall sense of gratitude than at the Transplant Games.”
Hosting the Games, inviting the community to volunteer, attend the Games and participate in the 5K, as well as coordination of the Legacy Tour, all is being done to raise awareness of the critical need for more organ, tissue and eye donors.
Today in the United States, more than 107,000 men, women and children are waiting to receive a life-saving organ transplant. In Wisconsin alone, more than 1,500 of our family members, co-workers and neighbors are waiting.
Sidebars:
- Community 5K Run/Walk for Organ, Tissue and Eye Donation
Saturday, July 31 at 9:00 a.m. at the Capitol Square
Registration (before July 16): $20; Day of Registration: $30
www.YesIWillWisconsin.com - Legacy of Life Tour Event Dates and Locations:
June 8: LaCrosse and Eau Claire
June 9: Wausau and Marshfield
June 10: Green Bay and Appleton
June 14: Kenosha
June 15: Janesville
June 22: Milwaukee
June 23: Madison - Statewide Sponsors: UW Hospital and Clinics, Froedtert Hospital, Children’s Hospital of Wisconsin, Aurora Health Care, Greater Madison Convention & Visitors Bureau, National Kidney Foundation of Wisconsin, American Family Insurance, Schuster’s Playtime Farm, Trek Bicycle Corporation, American Family Children’s Hospital, Madison Area Lion and Lioness Clubs, SVA, CUNA Mutual Foundation, Dean & St. Mary’s, Group Health Cooperative, WPS Health Insurance and Ancora Coffee Roasters
- To register as a donor: www.YesIWillWisconsin.com
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