A powerful voice and story, Robert Hutson has both. At age 24 Robert had just graduated and was planning on returning to school to earn a masters when Robert was diagnosed with Nephronophthisis, a kidney disease caused by a gene mutation.
“The day I was diagnosed was terrifying. I was calming down my family saying okay it’s gonna be fine we’re gonna figure out what’s wrong.” Robert shared.
Roberts’ parents carried two recessive genes, and Robert had a 25 per cent chance of getting it.
“I won the lottery, just not one you want to win.” Robert said.
Robert didn’t let this come between returning to school and chasing the dream of performing and opera singing.
“I knew that I was still going to be in music one way or another,” Robert added.
Robert currently receives dialysis treatment four times a week, for about three hours all while attending university.
“My life is just opera and dialysis, there are times where I edit my papers with one hand during treatment because my other is hooked up to the machine.”
Some of the biggest symptoms Robert experiences are fatigue and brain fog. It was obvious balancing school and kidney disease would be difficult. Unfortunately the symptoms weren’t all Robert had to worry about. People with Kidney disease are also at high risk of complications with minor illnesses such as the flu.
“I take every precaution, carry a kit everywhere with nasal spray, heavy duty masks, it’s a constant fear.” Robert said.
Robert was able to take part in a performance earlier this spring, however it took a lot of work.
“As soon as I was off stage the mask went back on, it was wonderful that the barrier was gone while I performed, but it’s never really gone, it’s always in the back of my mind that this is a risk, after each performance I would sleep for 14 hours.” Robert said.
There is no cure for Nephronophthisis. The treatment plan is dialysis, the best treatment is a new kidney. A transplant is still not a cure but it is the best course of action and would give Robert the best quality of life.
“With a transplant I won’t have to do dialysis, so a transplant is the goal” Robert said.
The transplant process is not a simple one. There is a long list of things that need to match up with the donor and recipient to ensure the recipient’s body won’t reject the kidney, one of those being blood type. Many of Roberts’ close friends and family came forward to attempt a match and potential transplant.
“It’s a huge ask to even have someone consider” Robert shared.
Unfortunately there was no success in getting a successful transplant match through friends and family, which meant Robert had to rely on a donation from the health care donor system or a stranger. Robert was a part of 3 donation chains when finally a match came.
“The day I got a call for a date for surgery my knees buckled under me.” Robert said.
3 weeks before the scheduled surgery the chain collapsed and Robert lost the chance at the new kidney.
“It was really tough getting the news that the chain had collapsed, the donor had to step away and I was back to square one.” Robert shared.
Robert has an instagram in an attempt at outreach in hopes of finding a donor. Robert remains positive, and will continue to chase dreams through it all.
“The opera, the stage, it’s all just so much fun, I hope to graduate in the fall from this program and return to school again and hope to get a doctorate.” Robert shared.
Robert will always turn to music, and says this experience will in some ways “give me a more fulfilling career.”
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