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Jan H.

For Jan, living with kidney disease is just a part of life. Unlike the majority of patients who progressively lose kidney function or the ‘crash starts’ – those who find out about their kidney disease once they have entered end-stage organ failure – Jan was only 3 months old when he was diagnosed with congenital nephritis. So living without kidney disease is foreign concept to him.

If you haven’t heard of congenital nephritis, you are not alone. This disease is an uncommon form of kidney disease in Canada, especially among children and youths, but it led to Jan’s kidney failure.

At age 3, Jan doesn’t have much recollection of those days, though he vividly remembers being told he needed to be on dialysis at age 5 and thinking he would need to live at the hospital.

For Jan parents, the memory of those days won’t ever be forgotten. Having a child require a transplant is a very painful experience to endure. It not something parents expect to hear or can even prepare for.

Fortunately, when Jan’s kidneys entered end-stage his father stepped up and gave him the gift of life when he was only 6.
His gift lasted Jan an incredible 24 years.

During this time, Jan remembers living a normal, healthy life. Besides the moments where he had to take his daily dosage of immunosuppressant and anti-rejection medications in front of friends, he played competitive sports, hung out with friends, and did everything one would expect from a child, teenager, and young adult.

After 24 years, Jan’s transplant failed. “It wasn’t until my transplant started failing that I started to feel sick for the first time in my life”, notes Jan.

His kidney failure wasn’t due to a particular illness or infection. All transplants have a finite life. Transplants are not a cure, but the best possible treatment for kidney disease.

Jan has been on dialysis since 2015, but another superhero has stepped up to give Jan the gift of life – his mother. Both underwent successful surgery in 2018.

In sharing their story, Jan hopes to raise education and bring awareness to the critical need of organ donors – both deceased and living – in this province.

When asked how we can raise the profile of kidney disease and organ donation, mother and son both say education regarding the severity of kidney disease and the shortages of organs, especially among kids and young adults, is urgently needed. That way individuals get important education and can make an informed decision