Often, those who have needed the kindness of others are the first to respond to others in need. Nina Young of Orillia is the perfect example of that person.
Young, now 40, moved to Orillia from Newfoundland in November of 2019 to be closer to the medical care she and her daughter need as they both suffer from Polycystic Kidney Disease. The inherited disease has taken six of her nine family members and has forced Young to go on dialysis to survive.
Having lost both her kidneys to the disease, Young relies on access sites to her veins in order to filter her blood. Unfortunately, problems with access sites caused her considerable problems in the past and in July of 2021, she was excited to hear she’d be having surgery to implant another access site that would alleviate many of her issues.
“I went in for surgery on July 13, to have a (peritoneal dialysis) catheter put in, because I am running out of dialysis sites; I only have two left.”
When Young returned home from the hospital, something as yet unexplained happened and her whole left side “went droopy,” leaving her feeling weak on that side.
Unfortunately, it happened when Young was heading up her stairs.
“I had a lot of steps to go up and I landed face first on the steps and it caused internal bleeding. I was three weeks in the hospital and my mobility had not regained and I still had major mobility issues from the hip down," she explained.
Young was unable to return home because of the stairs, so with some help she sold most of her belongings and checked into a hotel for three weeks using the money from the sale. At the end of the three weeks, the money was gone and Young still hadn’t found appropriate housing.
There were numerous challenges complicating Young’s attempt to find a home. COVID had significantly affected the number of homes for rent, as well as the cost to rent them and Young could only rely on her disability income.
When Young’s kidneys had to be removed in 2017, she began to suffer from post-traumatic stress disorder (PTSD). To control the disorder Young got an emotional support dog named Dexter and while Dexter has papers proving he is a support animal, they are not enough to give him service dog status. So, finding the right home that would allow Dexter was another challenge.
Because Young has to have dialysis multiple times a week, her home also had to be accessible for the life-saving equipment and most were not.
At the urging of the staff at the Ontario Disability Support Program office and hospital caregivers, Young entered a shelter operated by the Lighthouse in Orillia.
“I was in isolation for two weeks because that was protocol after coming from the hospital and then (I) moved to the new Lighthouse,” she explained.
“The Lighthouse was amazing. The staff and everything were amazing. However, the challenges they had to face with me because of all the illness and medical stuff was very stressful, although they never showed it," said Young.
"They did everything they possibly could to assist me, however my health continued to deteriorate. Since July, I’ve lost 60 pounds. We finally found out that I also have a gallbladder issue and my gallbladder needs to come out,” she said.
Because of further complications due to COVID and accessibility, Young encountered major challenges getting the health care she needed and requiring gallbladder surgery created even more layers of complexity to her situation. “Everything I ate just made me horribly sick.”
During this time Young developed fluid around her heart and found out she also needed to have a heart valve replaced. “This takes me right off the list for a transplant," she lamented.
So beaten down by her circumstances, Young questioned whether she wanted to continue on. She was her mother’s caregiver until her death from the disease, at age 45, and she knew what was coming. She didn’t want the same for her daughter, who had become her caregiver.
“I don’t want her to be my caregiver, I want her to be my daughter,” she said. “An illness doesn’t just affect you, it affects those around you, too.”
Young watched her mother’s slow decline to death, knowing it would be her future and didn’t want her daughter to go through the same painful experience.
“I’d decided that I no longer wanted to continue with dialysis as a form of treatment. I was literally going to take myself off dialysis. I was already four days without and I had no plans of going back.”
Going off dialysis would have cost Young her life.
“Dialysis is a form of life support. (Stopping life support) is not suicide. I wasn’t giving up, I was letting go. There’s only so much you can take and I know where this path leads if I don’t get a kidney," she explained.
In the meantime, Lighthouse staff helped Young to go on a mental wellness visit to see a friend.
“I had planned on saying goodbye,” she explained. Sometime during the night, Young had a seizure. She was sent to the same hospital her mother died in. “It was exactly the same. I’ve taken a very similar path to my mother.”
But between the people at the hospital and the staff at the Lighthouse, Young changed her mind.
“I decided that no, I’m not going to give up quite yet. With the support and I can only say, love, of these staff (at the Lighthouse)…they just said, ‘let’s take this one day at a time. Let’s deal with today,’” she said.
“If they had not helped me with it…” Young does not finish her sentence.
“I tell my daughter this is not God’s fault. God is giving us the strength to get through it. Even when we feel like we don’t have it, He still has (given us strength). He’s given me five more years to be able to see my daughter grow. It feels bittersweet, but I don’t regret any of it. There are still things I need to do on this earth.”
Among those things: giving back to The Lighthouse. She has signed up to be a volunteer to help support the Coldest Night of the Year event in February.
