‘Changed my life:’ Regina woman on lifesaving infusion therapy

A lifeline for many people across Saskatchewan is receiving a much-needed boost.

Health Canada lifted a ban on receiving blood donations from people who lived or visited the United Kingdom, Ireland and France between 1980 and 2001. The ban was instituted because of the mad cow disease outbreak.

Regina’s Katherine Kay receives lifechanging blood infusions up to three times a week. Without the infusions, her health would deteriorate.

“These treatments give me a quality of life that I wouldn’t have without it,” she said. “It’s such an understatement and undervalue when I say, ‘Oh my gosh, this has changed my life,’ because everything that I do I have to give credit back to a lot of my infusion therapy.”

She was diagnosed with postural orthostatic tachycardia syndrome (POTS) in 2016.

“It’s an autonomic nervous system disorder. My body really struggles to regulate blood flood and send correct signals. So I have a lot of lightheadedness, vertigo, low blood pressure, a high heart rate and from that comes anything from nausea, sensitivity to light — anything like that,” explained Kay.

After trying a few different treatments, she was put on infusion therapy.

“The POTS that I have, it kind of varies from person to person,” she said. “Some people might have POTS and have limited symptoms and can be managed with different things. But my POTS symptoms were just too severe and I have been dealing with POTS symptoms since I was 10, so for the last 16 years now. And there’s just no sign of it getting better.”

Before her therapy started, Kay would be bedridden for months at a time. She said she barely got through high school because her health was so unpredictable.

“I truly didn’t know what one day would look like to the next,” she said. “Starting infusion therapy, I started building more of a balance in my life. And now I finished my education degree, finished my inclusive education certificate (and) I’m starting my master’s. I am a homeowner. I work part time but it’s basically my full-time (job). And none of that would have happened if I wasn’t given the opportunity to get these infusions.”

At only 26 years old, Kay has received 734 blood infusions. She’s a regular at the blood donation centre in Regina, going about every three days.

Kay celebrates every milestone in her infusion therapy journey. Here she is celebrating her 700th infusion. (Katherine Kay/Submitted)

Canadian Blood Services sounded the alarm in October that blood donations were running dry.

Kay got a small taste of what would happen if she couldn’t receive treatments when the COVID-19 pandemic began.

“There was one point right at the beginning of COVID where everything was at a standstill. Infusions were cut,” she said. “We were considered, for the most part, non-essential. That was my very first experience of, ‘Holy cow, I can’t take for granted,’ because my health relapsed within a matter of weeks.

“So they got me back in and that was my first indicator of, ‘Wow, this can be taken away so easily.’ That always brings me back to those who donate blood. I feel like a lot of times there’s so many people that don’t see a face when it comes to why they’re donating blood.”

She acknowledges that her condition isn’t as bad as others. She worries about those with more critical cases and how a blood shortage might affect them.

“I’m really fortunate. There are people that are in much more critical positions, where if they do not get this blood transfusion, they will die,” she said. “That’s such a scary reality.

“There are so many lives that are impacted for the best when people are able to donate blood that I couldn’t imagine what we would do if the shortage continued.”

It can be hard to visualize the impact of giving blood. Kay wants people to know that their blood donations impact real people like herself.

“I feel like if you can go into giving blood knowing that if you never got to meet me, or someone like me, that would be on the recipient end of blood transfusions of some sort, just know that we exist and we’re out there,” she said.

She encourages those who are able to roll up their sleeves and donate.

“I just see so much life being impacted in the giving and receiving end that it is all valued. It is something where if you’ve been kind of on the fence about donating, I feel like now is your time, especially now more than ever with the shortage happening. We need blood,” said Kay.

Katherine Kay is a big advocate for blood donations. “There are so many reasons why people can get blood infusions and different types of blood infusions and that’s why we kind of need it all right now,” she said. (Katherine Kay/Submitted)

Blood infusions aren’t the final answer for Kay and her battle with POTS, but thanks to them, her health is at a good place.

“I reflect so much on the childhood version of me that had to grow up not knowing what was going on and not knowing what the next day was going to look like,” Kay said. “Knowing that I have these types of supports that makes such a notable difference to myself really 360’s my approach at life mentally and physically.”

Mad cow ban lifted

Mike Choi, the associate director of donor relations and collections for the prairie region for Canadian Blood Services, said the initial ban was a precautionary measure during the mad cow outbreak. The disease is also known as Bovine Spongiform Encephalopathy (BSE).

“Potential exposure to contaminated beef products introduced the risk of humans acquiring an illness called variant Creutzfeldt-Jakob disease or vCJD for short. vCJD is commonly refereed to the human variant of mad cow disease, which is a very rare fatal neurological disease that was discovered during this time,” said Choi.

At the time of the ban, it was difficult to assess the extent of the outbreak and likelihood of transmission by transfusion of blood and blood products.

“The first line of defence for blood operators around the world was really to change the eligibility guidelines for people in countries at most risk for vCJD. This included the U.K., Ireland and France. This criteria has been in place at Canadian Blood Services since 1999,” he said.

Starting Monday, those individuals will now be able to donate blood.

The decision to lift the ban didn’t happen overnight. Choi said the change to eligibility is based on 30 years of surveillance and research which showed that removing the criteria would not lead to an increase in vCJD transmission.

Canada is following countries like Australia and the United States which also lifted the same restriction within the last year.

Choi said blood shortages are always an issue around the holidays.

“The need for blood and plasma is constant,” he said. “Right now is a perfect time to become a blood donor because the need is greater in and around the holidays where blood donation is not really top of mind for a lot of folks, and not top of mind for maybe our regular blood donors because they’re so busy with family festivities or vacations or what have you.”

He’s looking forward to welcoming new donors and welcoming back folks who tried to donate in the past but were ineligible.

According to Choi, from now until Dec. 31, there are more than 2,900 donation appointments left to fill between Regina and Saskatoon.

Anyone interested to donate can visit www.blood.ca to book an appointment.