Grappling between fighting through a constant struggle of enduring treatment or entering hospice; preparing to say goodbye app the choice of life or death app is an unimaginable position.
The internal conflict that comes with making a pros and cons list between living and dying can take a toll.
That choice is one Than Win of Fort Wayne said he is dishearteningly familiar with, after spending three years watching his name migrate through the transplant list and hoping for a match. He continues to wait for a match.
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 apppretty sickly kid growing upapp and was diagnosed with diabetes when he was 9 years old. As a child of parents who are immigrants, he said navigating his health problems was a struggle.
appMy parents were refugees from a third-world country, so they didnappt really know their health problems, didnappt really understand the concept of what being sick meant or having chronic illness,app he said.
During one of Winapps routine checkups, his doctors noticed he had a lot of protein in his urine. Win said he didnappt take it too seriously as he recalls not feeling sick, so his parents thought he was fine.
About age 14, he was sent to Riley Hospital for Children for a biopsy. He was diagnosed with an autoimmune disease, IgA nephropathy, or Bergerapps disease. By that time, Winapps disease had already progressed to Stage 2.
Bergerapps disease occurs when antibodies are deposited in the kidneys, causing inflammation and kidney damage, causing blood and protein to leak into the urine, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
It wasnappt until his second year of college that he began experiencing symptoms of kidney disease: worsening low energy, struggling to concentrate and weight problems.
appBergerapps 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,app Win said. appBut for some folks, their disease kind of flares up, and in my case, thatapps what happened.app
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 canappt walk up stairs and relies on a cane to get around. He said since he started dialysis, his kidney function has plummeted.
appItapps hard for me to walk long distances now, Iappm not able to lift things as much as Iappd 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 thatapps about 20 hours a week,app he said. appItapps a part-time job.app
According to the National Library of Medicine, the five-year survival rate after maintenance dialysis sessions begin is about 40%.
Win has been on dialysis for over three years.
appItapps a scary thing to be facing chronic illness, and itapps a lonely thing sometimes because even though your champions and support network are there, itapps you at the end of the day, and it can be very painful, very dark there,app Win said. appItapps like grieving, and itapps not linear.app
Win wants people to be aware of the impacts of kidney disease and its prevalence as a appsilent killer.app While he recognizes some people arenappt comfortable sharing their stories, he said when you find those who are, truly listen to them.
Aye Min admires his younger brotherapps ability to speak his mind, and as a vital part of his support system, Min sees the more vulnerable side of Winapps journey.
appItapps 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,app Min said. appThat doesnappt necessarily always have to be a big change.app
Win’s microsite with the National Kidney Registry is one way he practices this message. The site, available online at , 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.
appIn terms of seeing him on the machine and seeing how low energy he can be after having a dialysis treatment, itapps kind of hard to see, but he always likes to keep in good spirits,app 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.
appI do my best to push it out to my friends and family, see if thereapps anybody thatapps willing to help (with) posting those links, on my social media,app Wesley said. appHe 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.app
Win emphasizes the importance of a support system for people with chronic illnesses, especially dialysis patients.
He said without his friends and family, he would struggle a lot more with managing his disease app not only without their physical assistance, with things like cleaning and driving to doctorapps appointments, but their emotional support as well.
appI mean, (my family and friends) remind me that I have the motivation to continue, not just for me but for others,app Win said.
While some days are worse than others, Win said itapps ultimately about staying focused and not losing hope.
appThere are certain days, like when I have a really bad dialysis session (or) Iappm just not feeling well,app he said. appItapps like, appIs this pain worth waiting this long? Is there someone who wants me to survive?app You question your quality of life, and you question whether living is worth (it).app
There is another aspect of Winapps kidney failure: his comfort with discussing death. He simply views it as another part of life.
appI am familiar with medical things and understanding that life is not permanent from a very young age,app Win said. appWhen I talk about death now, Iappm not necessarily afraid of it. Itapps comforting to talk about it, knowing that this is to come, and corny to say, but death waits for no one.app
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.
appThe way he sees life and the way he makes decisions is very like, appIappm gonna do this because I donappt know if Iappm gonna have the opportunity to do this again in the future,app and I just love that take because it allows you to make the decisions you want,app she said.
An added layer to Winapps 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 wouldnappt 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 Bergerapps disease, itapps a treatment for kidney failure. There is potential for his disease to flare up again after receiving a new kidney.
He said heapps heard cases of transplant recipients living for more than 20 years, but some people can lose their kidney within a month or week if theyappre not careful.
Out of 504 transplant recipients with IgA nephropathy, 82 had recurring protein deposits, according to the National Library of Medicine.
Win said he hopes medication and a healthy lifestyle would prevent his immune system from attacking his new kidney, but he fears itapps inevitable that the transplant would fail. Heapps 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 things could change when heapps older.
appThere was a period of time last year where I was like, appMaybe I should just quit and go into hospiceapp; app it was a tough time because Iappm also balancing my mental health,app Win said. appThere is no good way to balance it. Best way I can describe (it) is youappre going to have your bad days, and youappre just going to have to get through it. And you will because youappve gotten this far.app
