April is National Donate Life Month

In celebration of Donate a Life Month in April, we have interviewed three local families that have been hit hard with the gift of organ donation. We hope that these stories will encourage you to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation. We each have the power to make life possible by registering.

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Tyson & Jenny Asher's Transplant Story

At 17 years old, Tyson Asher’s life was normal. He attended McCracken County High School, went to soccer practice after school and caught up with friends on the weekends. But one doctor’s visit changed everything.

Tyson needed a minor surgery and during his pre-surgery visit, his doctors noticed his blood pressure was abnormally elevated. Tyson’s mother, Jenny Asher, is a registered nurse and thought his reaction was odd, but agreed with his doctors that it was likely “white coat syndrome,” or a common syndrome that occurs when someone is very nervous or anxious with the anticipation of a medical procedure.

The Asher family had traces of high blood pressure in their genetics, but Jenny could not believe that as healthy and athletic as Tyson was, he was already having complications with blood pressure. When his blood pressure remained high after returning home from the doctor’s office, Jenny called Tyson’s pediatrician concerned. They went back to the doctor’s office where they ran multiple tests on Tyson to uncover the reason for his spike in blood pressure.

The test results came back and there was a problem. Tyson’s high blood pressure was the result of an issue with his kidneys. Jenny was shocked. Initially, they were told Tyson had acute kidney failure and they needed to quickly decide whether they wanted to go to Louisville or Nashville that very day. Within a few hours, Jenny and Tyson were waiting at the Baptist Health Hospital to board an ambulance that would take them to Kosair Children’s Hospital, now called Norton Children’s Hospital, in Louisville.

At Norton Children’s Hospital, doctors diagnosed Tyson with IgA Nephropathy. This disease was unfamiliar to Jenny, but she quickly understood the severity of Tyson’s condition. The acute kidney disease was slowly progressing and they had to do something quick. The doctors offered various options including changes as simple as adjusting Tyson’s diet to a major kidney transplant. Though Tyson had options, the doctors are confident he would need a kidney transplant sooner or later.

After returning home, Jenny’s worst fears were confirmed. Tyson’s health rapidly declined. Tyson’s doctors from Norton Children’s Hospital, and local kidney specialist, determined that he needed to be immediately treated with dialysis, a treatment needed when the kidneys can no longer function on their own, until he could get a kidney transplant. “That broke my heart,” said Jenny.

Three days before Tyson attended his junior prom, he was fitted for a catheter to use at home dialysis. Every night, he hooked up to dialysis around 8 p.m. to be ready to go to school the next morning. In the meantime, Tyson was placed on a kidney transplant list. Jenny understood that an organ donor must die for Tyson to live, but she also knew there was the possibility of Tyson receiving a kidney from a living donor. Out of the two kidneys each human being is born with, only one kidney is needed to replace two failed kidneys, making living-donor kidney transplantation an option.

The best choice for a donor would have been a brother, which Tyson did not have. The next best option was his sisters, but because of the complications it can cause for women, Jenny did not want to put her older daughter through the surgery and her younger daughter was too young to qualify as an organ donor. Jenny and her husband eagerly volunteered to be organ donors for Tyson but because of some health complications Tyson’s father endured, Jenny was the top choice of an organ donor for him. Jenny volunteered to be Tyson’s donor and went through rigorous testing and questioning during the months leading up to being approved.

“I believe being an organ donor to Tyson fulfilled God’s calling for me to be a mother. I would do anything for my children and this was fulfilling my purpose. I knew we would beat this and I would be the one to do help Tyson get through it,” said Jenny.

Jenny’s vetting process for being an organ donor was extensive and grueling. She was asked every question possible about her health and lifestyle and feared answering one question wrong would jeopardize her chance of being an organ donor for her son. All of her testings had to be done at labs in Louisville, which meant that she had to make the trip multiple times over the course of a few months. Though the doctors tried to conduct all of her testing within one day, she often times drove to Louisville, tested for about 45 minutes, and drove back to Paducah all in the same day.

To cope with the treacherous months spanning from Tyson’s diagnosis leading up to his kidney transplant, Jenny says she leaned onto her faith for reassurance and guidance. “Our faith is very strong and this process made our faith even stronger. It took a lot of prayers, a lot of devotion and a lot of talks with God. But it was also the support from our family, friends and community that got us through it.”

On September 5, 2018, Jenny was cleared to be a living organ donor for Tyson. Approximately one month later on October 9, she went into surgery to remove her kidney. She was both nervous and terrified during the weeks leading up to her surgery. Not for the surgery itself, but in fear of the doctors finding a reason she could not follow through as an organ donor. As Jenny recalled, “I cleaned out a bathroom and cleaned my kitchen with my nervous energy for fear that something would happen. I was so afraid the doctors would say I didn’t qualify and we would have to start the search for an organ donor all over again.”

The day of surgery arrived and Jenny became a living organ donor for her son. She recalls it being the most excruciating pain she has ever experienced as she went though nausea and almost unbearable pain during the days after her surgery. “I heard the pain was worse for the donor than it is for the recipient and I could believe that. The pain was terrible. But I would do it again tomorrow if one of my children needed me to,” said Jenny, a mother of three. She took six weeks off from work to recover and returned to her job as a registered nurse Thanksgiving weekend.

As for Tyson, his organ transplant was a success. Though he experienced some setbacks that kept him admitted in the hospital for 34 days after the transplant, he was able to return home, stop dialysis treatments and return to a fairly normal life. It’s the little things in life that Tyson recognizes and appreciates now. The normalcies of life that he was unable to experience for months.

“Since my transplant, my health has been so much better. I have more energy and am off my strict diet so I can eat like normal and go places with my friends like normal,” says Tyson.

Months after his transplant, Tyson keeps his health on track by sticking to a strict schedule for taking his medication. He goes to occasional checkups with his doctors but overall, he feels like life has gone back to normal for him.

Tyson says he made it through his traumatic experience by looking towards the future. “I focused on what was ahead. It helped me to understand that I could get back to a fairly normal life after is all said and done. That’s what I kept thinking to myself and it helped me get through my transplant.”

Because of an organ donation, Tyson is able to achieve his dreams and return to a normal life. Jenny encourages others who are contemplating whether or not to be an organ donor to remember people whose lives depend on organ donations. People like her son, Tyson.

“If I was asked if someone should be an organ donor, I would say yes. Absolutely, yes!” says Jenny. “We were pro-organ donation before Tyson’s health led him to an organ donation and his experience only strengthened that belief. As the old adage goes, you can’t take it with you, and heaven knows your organs are needed on earth. For those who are on the fence or against organ donations, I would encourage those people to think if your family member or your own child needed an organ donation to live.”

 

#AddyStrong Forever

She was the beautiful brown-eyed baby girl who, even though she was born with a heart that only was fully developed on one side, stole our entire hearts as we watched her fight for her life awaiting a transplant.

A Facebook page that Adalynn Rogers’ parents used to keep family and friends updated of their child’s condition while she battled complications from her congenital heart defect, Hypoplastic Left Heart Syndrome, blossomed to nearly 100,000 followers - followers from around the region and world who awaited updates on her condition and who prayed and worried when she experienced complications.

More than a year after Addy lost that fight on January 26, 2018 at just two years old, people still reach out in that online community with messages of support for her parents Kristi and Justin, extending prayers and sharing memories of the girl that we all prayed together for as a community.

Kristi and Justin, who live in Milburn, Ky., say that, even now, they are thankful for the support that their community and neighbors around the region extended while Addy was sick.

“We live in the best community,” Kristi says.

“We received all kinds of support from them.”

“They designed the #addystrong logo and sold t-shirts, had a benefit dinner, a pancake breakfast, the school our kids go to raised money and churches showed their support.”

“They were all looking out for our boys while we were away.”

“Having that support during that time not only helped financially but mentally.”

“Justin was able to stay at the hospital with Addy and I, which was exactly what I needed at the time.”

“Everyone was there for our girl and us and it meant the world.”

Kristi says that her close family members were instrumental in keeping their family functioning while she and Justin spent time in Vanderbilt Children’s hospital with Addy.

“They went above and beyond helping us with our older boys at home while we were in the hospital with Addy,” she says.

“Working from home every other week to take care of the boys and dropping plans they had so they could bring the boys to see us on the weekends.”

“It’s because of them we were able to make it through this journey.”

As they celebrated their daughter’s third birthday and the first anniversary of her death, Kristi and Justin are committed to keeping Addy’s memory alive and to helping others who are suffering from CHD (congenital heart disease).

They have partnered with Project Heart to raise money for research and awareness in Addy’s name through Addy’s Grant Fund. For that fund, 100 percent of the proceeds will be used for a CHD research grant benefiting children with HLHS.

But more importantly, her family remembers her.

“She was the sweetest girl you would ever meet,” Kristi says.

“Addy didn’t let her heart condition stop her- she loved her big brothers, playing outside, coloring, riding the ranger and her baby dolls.”

“She loved all of her ‘pretty pretty’ like her ruffle pants, necklaces and bows.”

“Adalynn was our hero and showed us how to be strong and brave just like her.”

And, in April’s Donate Life month, a time dedicated to people who have and who await transplants, Kristi and Justin urge others to remember Addy’s journey.

“Organ donation is the best possible gift anyone can ever give or receive and I wanted so bad for Addy to receive her second chance at life,” Kristi says.

“Our hope with Addy’s journey is for every parent to say yes if they are ever faced with that horrible, life-changing decision.”

A life completely changed is something that Kristi and Justin are learning to live with every day as they adjust to their new lives without Addy.

“Saying goodbye to one of your children changes you,” Kristi says.

“Some days are okay. Then other days, it hits you like a ton of bricks and feels as if you won’t make it another second without them.”

“We take the pain day by day as it comes and try to keep her memory alive every chance we get.” 

Stephanie Brown's Transplant Journey

When someone donates blood, they are giving the gift of life. For many, the thought of organ donation is often connected to the thought of their own death happening first, and many people choose not to be donors. In a vast number of scenarios, however, death occurrence for a donor is not the case at all. Live donors are essential to the gift of life that others need so greatly.

How big is the waiting list for organ donations? Bigger than commonly realized. As of August 2017, over 110,000 people are on the organ donation waiting list in the United States, according to organdonor.gov. That number is always increasing. Given the number, and how it would seem small compared to the population in our country, it would be easy to wonder why it is so hard to find matching donors.

But donating an organ as a live donor is not as easy as signing your name on the dotted line. Live donors are among this generation’s superheroes. The people on these waiting lists, however, are also superheroes, like one amazing woman I have recently met. Allow me to introduce her to you:

Stephanie Brown is a 32-year-old single mother who has been waiting a decade for a life-saving kidney donation. Since March 2009, Stephanie has been on dialysis 3 days a week, for several hours each visit, to keep her body functioning as it should to stay alive. Her 10-year-old son, Blane, is her pride and joy, her life, and the reason she continues to fight with all determination.

Stephanie is very involved in Blane’s school, scouting, and all other aspects of his life. She remained off dialysis and other treatments during her pregnancy with her son, so he would be born healthy. Stephanie takes Blane to Vanderbilt University Hospital in Nashville every year to be seen by a specialist and ensure that he does not develop any kidney issues. Stephanie was born with kidney failure, but the disease she has is not hereditary. She and the doctors are using preventative measures to ensure Blane’s health and well being throughout his life as well.

Everyone has a story, and we can learn to truly appreciate each person’s story more when we get to know them. That is what awareness for organ donation brings to light. The life and story of each person who continues to fight and live, no matter how long they must wait or what they endure, because their story is not over. Stephanie’s story has been featured in Paducah Life and WPSD over the course of her journey, and while she is glad to see awareness spread about her disease and the need for live donors, she wants to remind us that there is more to her name and face than the label that kidney disease gives her.

“I am so much more than my disease,” Stephanie told me, as we spoke about life and awareness, and she is right! Along with her involvement with her son’s education and extra-curricular activities, Stephanie runs a Facebook support group page supporting awareness for her kidney disease, which is FSGS (Focal Segmental Glomerulosclerosis). It is the leading cause of kidney failure in adults. She has a wealth of knowledge about her disease, the waiting list, requirements for live donors, and specific details about matches. Stephanie is an O+ blood type, which means she can only receive a kidney from an O+ or O- donor. Along with her Facebook page, she sells T-shirts for $12 each to support awareness, and she has a blog where she reviews restaurants as a hobby on the side.

If that isn’t enough to make her a superhero of our time, she is currently undergoing recovery and therapy from broken hips! Stephanie is positive, encouraging, and very upbeat about her life. She is a great example for others to see and follow. She has been an influence in our community for awareness, and one who is making a difference.

You can join her support group on Facebook, Support Stephanie, and see her updates, progress, and news regarding kidney disease and donor awareness. She can be contacted through the support group page, and her T-shirts can be found on the support group page as well.

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