Real Stories

Michelle's Story

(image) When a person is diagnosed with Alport Syndrome, it is typically only a matter of time until their kidneys begin to fail and the idea of a transplant is considered. For Michelle, from Portage, this syndrome had a direct effect on her and her family. Her nephew, Spencer, was born with Alports and his family knew that someday he would be in need of a kidney transplant.

Spencer’s father had wished to be the kidney donor for his son. However, after going through testing, it was discovered that he was not a correct match. Being his aunt, Michelle was willing to do anything to help Spencer. She was tested at UW Hospital to see if she could be a donor and discovered she was the best possible match for Spencer.

Without any hesitation, Michelle decided to have the surgery and give one of her kidneys to her nephew. The surgery took place in 2009 when Spencer was 17 and seven years later, he is doing great! Michelle saw firsthand what the process of organ donation entails, and now she has become a strong advocate for the cause. Not everyone has the opportunity to be a living donor to a loved one like Michelle, but everyone does have the ability to become a donor.

“You can’t imagine how grateful someone is when they finally receive their organ,” Michelle stated.

Transplant Stories

Brenda S. received a kidney transplant in 2004 and has participanted in the Capital City 5K. While Brenda was in 6th grade, her grandmother died after a week of dialysis. This led her to think that kidney failure results in death. However, she has lived through a different experience, celebrating her eighth anniversary of her transplant on May 6th. She has been through ups and downs but feels blessed to be going eight years strong. To read more of her story, follow this link to her blog: http://jadedpinkie.blogspot.com/2012/05/pinkie-day.html

Spencer V. received a kidney transplant in 2009 and is a participant in this year’s Capital City 5K. He got his transplant from his Aunt Michelle. Later that year Spencer got the BK virus, which got to his new kidney. Fighting the virus brought on rejection and he spent most of 2010 in and out of the hospital to fight the virus. Spencer has successfully fought the virus, but last December he went on dialysis. Today he is feeling good and was just placed on the donor list. 

Carol H. received a kidney transplant in 2011 and is a participant in this year’s Capital City 5K. Carol has a history of Polycystic Kidney Disease in her family. In her early 40’s, she learned that she had this disease. By 2010, her kidney function was at 14%. She began peritoneal dialysis so she could live her active lifestyle. After being on the United Network for Organ Sharing registry for a little over two months, she received her transplant. She is incredibly thankful to her donor family for their gift of hope. Today Carol speaks at driver’s education classes about the Wisconsin Donor Registry.

Susan J. donated a kidney to her husband Travis D. Jordan in 2006 and is a participant in this year’s Capital City 5K. Travis suffered kidney failure from an autoimmune disease. After trying one hospital, Susan was able to donate to Travis at UW Hospital, despite having different blood types. Unfortunately in 2010, Travis had a defibrillator malfunction, causing his heart and kidney health to slowly decline. Travis passed away on March 28, 2012. Today, Susan is listed on two registries and continues to donate blood in memory of Travis. 

Diane G. received a kidney transplant in 2010 and is a participant in this year’s Capital City 5K. Diane was diagnosed with PKD, enlarging her kidneys to the point that they were suffocating other organs. She knew a transplant was in her future. The first phone call came in August of 2009, but she didn’t receive her transplant until the fourth call in January of 2010. Today Diane is living a very happy and healthy life. She is disease free thanks to her new kidney that cannot get PKD. Diane also has developed a relationship with her donor’s family, which is a remarkable and humbling part of her journey.

Diane G. is a living donor and is a participant in this year’s Capital City 5K. Diane’s son Michael Nicholas was diagnosed with kidney problems and once the doctors new he would need a transplant. Diane immediately decided to get tested to be a match. Diane was a suitable donor and was excited to be able to give her son a chance at a “normal” life. There was fear that Michael Nicholas was rejecting the kidney, but it turned out that it just needed time adjusting to its larger environment. Today Diane is doing great and Michael Nicholas is able to pursue his Bachelor’s degree and keep up with two daughters.

Paula S. has received four kidneys from living donors and is a participant in this year’s Capital City 5K. At age 10, Paula was diagnosed with kidney problems. Her kidneys slowly deteriorated during high school, and her mom donated Paula a kidney in her junior year. During her hospitalization she was diagnosed with cystinosis, a rare genetic disease that causes damage to muscles and organs. Cystinosis destroyed her kidneys. In college, she received her second transplant from her brother who was serving in Operation Desert Storm at the time. After 11 years, the kidney from her brother was “wearing out,” so shortly after marrying her husband Jim, he donated his kidney to her. Seven years later an invasive ultrasound caused an infection to damage the kidney from Jim. Jim coordinated a donation drive where 22 friends and family willingly got tested to donate a kidney to Paula. A friend from work donated her kidney to Paula in 2009 and she hasn’t had a problem since. Today, Paula tries to pay it forward through volunteering at the VP Education and Awareness for the Cystinosis Research Network for the past eight years.

Team Kipper

(image) My mom, Loree, struggled with high blood pressure since her early twenties. In 2008 she went in for her annual physical and was told that she would need to see a kidney specialist. This took her by surprise. She did not know that high blood pressure could cause kidney damage and she did not know that she was in any type of danger. She was scheduled to start dialysis. 

As a close knit family we all were shocked and terrified as to what may come from this. My two brothers and I got tested to see if we were good matches to donate one of our kidneys. Unfortunately we were not. My mom was adopted so she had no known siblings that could be tested either. We had to put our faith in a miracle. Because we didn’t know what kidney failure was and how dialysis worked, we all spent a lot of time doing research and reading to get as much information as we could. We made it our mission to try and find my mom a donor.

Over the next few years my mom did dialysis at home. We waited for what seemed like an eternity to get the call for a donated kidney. She finally got the call we prayed for. On May 30, 2012 my mom got her kidney. It was a pretty special time for her - not only did she get her kidney but she also had a birthday a few days later on June 2nd. She was still in the hospital but that didn’t stop us from celebrating. Friends brought a cake that read "Happy Birthday Loree and Kidney Too". We brought balloons and flowers and gifts to celebrate the extra special day with her. 

After a few days we decided to give the kidney a name and her granddaughter came up with Kipper the Kidney. These days, Loree and Kipper are doing amazing.

If we had known what to watch for with high blood pressure and kidney health, maybe we could have prevented this from happening. The National Kidney Foundation of Wisconsin is crucial for this very reason.

Thanks for doing all that you do to help out people and their kidneys! 

Jackie Paasch
Team Kipper 

Every day, families like Jackie's contact NKFW for current information, helpful resources, or to take part in the kidney health screenings and educational programs we are able to provide through contributions from people like you. Please help us prevent kidney disease, or help those already living with kidney disease. Send a gift TODAY!

Jackie Smith

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Jackie and Ken Smith of Baraboo, WI, participants in the Capital City 5K for Organ, Tissue and Eye Donation, have a personal story about the importance of talking to your family about organ donation.

Jackie’s teenaged son, Christian Rector, loved running and loved playing in the school band. He had a strong sense of community, and an inherent knowledge that all life is interconnected. He was particularly impressed by people who were organ donors, as he felt that having the opportunity to help another person by giving the gift of life was a great honor.

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