Ball State student still waits for organ donation after three years on transplant list

Grappling between fighting through a constant struggle of enduring treatment or entering hospice; preparing to say goodbye — the choice of life or death — is an unimaginable position.

The internal conflict that comes with making a pros and cons list between living and dying can take a toll.

After spending three years watching his name migrate through the transplant list and hoping for a match, this choice is one Than Win is dishearteningly familiar with.

Than Win is a Ball State University graduate student studying student affairs administration in higher education and is an assistant residential learning coordinator in Beyerl Hall.

Win described himself as a “pretty sickly kid growing up” and was diagnosed with diabetes when he was nine years old.  As a child of parents who are immigrants, he said navigating his health problems was a struggle.

“My parents were refugees from a third-world country, so they didn’t really know their health problems, didn’t really understand the concept of what being sick meant or having chronic illness,” he said.

During one of Win’s routine checkups, Win’s doctors noticed he had a lot of protein in his urine. He said he didn’t take it too seriously as Win recalls not feeling sick, so his parents thought he was fine.

Around the age of 14, he was sent to Riley Children’s Hospital for a biopsy. Shortly after, he was diagnosed with an autoimmune disease, IgA Nephropathy, or Berger’s Disease. By that time, Win’s disease had already progressed to stage two.

Berger’s Disease occurs when antibodies are deposited in your kidneys, causing inflammation and kidney damage, causing blood and protein to leak into your urine, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

It wasn’t until his second year of college that he began experiencing symptoms of kidney disease: worsening low energy, struggling to concentrate and weight problems.

“Berger’s Disease goes into the realm of chronic kidney disease, so that is manageable. You can work on preventing losing your kidney function for a very long time,” Win said. “But for some folks, their disease kind of flares up, and in my case, that’s what happened.”

Win went into kidney failure during his third year of earning his undergraduate degree.

He said in the early stages of the disease, he was still able to do the things he loved, like soccer and marching band. Now, three years after going into kidney failure, Win can’t walk up stairs and relies on a cane to get around. He said since he started dialysis, his kidney function has plummeted.

“It’s hard for me to walk long distances now, I’m not able to lift things as much as I’d like to, and just being on dialysis, that is four hours of me sitting in a chair straight-up, and I have to do that five times a week, so that’s about 20 hours a week. It’s a part-time job.”

According to the National Library of Medicine, the five-year survival rate after maintenance dialysis sessions begin is approximately 40 percent.

Than Win has been on dialysis for over three years.

“It’s a scary thing to be facing chronic illness, and it’s a lonely thing sometimes because even though your champions and support network are there, it’s you at the end of the day, and it can be very painful, very dark there,” Win said. “It’s like grieving, and it’s not linear.”

Win wants people to be aware of the impacts of kidney disease and its prevalence as a “silent killer.” While he recognizes some people aren’t comfortable sharing their stories, he said when you find those who are, truly listen to them.

Aye Min admires his younger brother’s ability to speak his mind, and as a vital part of his support system, Min sees the more vulnerable side of Win’s journey. He shared his brother’s sentiment in encouraging people to be more empathetic.

“It’s not always obvious someone is struggling with a physical illness. Continue to be open-minded about people you see, and then maybe think about different ways [you] can take action,” Min said. “That doesn’t necessarily always have to be a big change.”

Win’s microsite with the National Kidney Registry is one way he practices this message. The site is intended to help him find a donor and teach people about his health journey.

Jayla Wesley is a close friend of Win and admires his ability to stay positive throughout his treatment.

“In terms of seeing him on the machine and seeing how low energy he can be after having a dialysis treatment, it’s kind of hard to see, but he always likes to keep in good spirits,” Wesley said.

She said she feels like, to a certain extent, she can see his struggle a little more clearly as someone who cares about him, and she supports him by helping spread the word about his search for a donor.

“I do my best to push it out to my friends and family, see if there’s anybody that’s willing to help [with] posting those links, on my social media,” Wesley said. “He has such a big heart, and he not only cares about his health but the health of others who are also in the same predicament as him.”

Win emphasizes the importance of a support system for people with chronic illnesses, especially dialysis patients. He recalls the pain of seeing older patients come into the dialysis clinic who didn’t have people to help them through the difficult process.

He said without his friends and family, he would struggle a lot more with managing his disease. Not only without their physical assistance, with things like cleaning and driving to doctor’s appointments but their emotional support as well.

“I mean, [my family and friends] remind me that I have the motivation to continue, not just for me but for others. That they are there because they want to be there, and I should continue fighting for them as well,” Win said.

While some days are worse than others, Win said it’s ultimately about staying focused and not losing hope.

“There are certain days, like when I have a really bad dialysis session [or] I’m just not feeling well,” he said. “It’s like, ‘Is this pain worth waiting this long? Is there someone who wants me to survive?’ You question your quality of life, and you question whether living is worth [it].”

Pushing through spending 20 hours a week on dialysis and hoping to find a donor, there is another aspect of Win’s kidney failure; his comfort with discussing death. He simply views it as another part of life.

“I am familiar with medical things and understanding that life is not permanent from a very young age,” Win said. “When I talk about death now, I’m not necessarily afraid of it. It’s comforting to talk about it, knowing that this is to come, and corny to say, but death waits for no one. It will come at any point.”

Wesley said while others might find talking about dying at an early age morbid, she feels like it manifests itself in a positive way with Win.

“The way he sees life and the way he makes decisions is very like, ‘I’m gonna do this because I don’t know if I’m gonna have the opportunity to do this again in the future,’ and I just love that take because it allows you to make the decisions you want,” she said.

An added layer to Win’s mentality surrounding death is his anticipation of the process after a transplant. He said he would have to take a variety of medication, including immunosuppressants so his body wouldn’t attack the new kidney, for the rest of his life to keep the organ functioning properly.

Even with the transplant,  a new kidney is not a cure for Berger’s Disease, it’s a treatment for kidney failure. There is potential for his disease to flare up again after receiving a new kidney.

He said he’s heard cases of transplant recipients going strong for over 20 years, but some people can lose their kidney within a month or week if they’re not careful.

According to the National Library of Medicine, out of 504 transplant recipients with IgA Nephropathy, 82 had recurring protein deposits.

Win said while he hopes medication and a healthy lifestyle would prevent his immune system from attacking his new kidney, he fears it’s inevitable that the transplant would fail. He’s had conversations about if he would go back on dialysis if he needed to in the future.

Right now, his answer is no, but he said when he’s older things could change.

“There was a period of time last year where I was like, ‘Maybe I should just quit and go into hospice’ … it was a tough time because I’m also balancing my mental health,” Win said. There is no good way to balance it. Best way I can describe [it] is you’re going to have your bad days, and you’re just going to have to get through it. And you will because you’ve gotten this far.”

Contact Ella Howell via email at [email protected].