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what it feels like: leaning on love and friendship with pulmonary hypertension
7 minute read
kirsty recently celebrated her 50th birthday party with all of her friends and her sons josh, left, and dylan.
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kirsty mcgeown and two of her closest friends all have a ship’s anchor tattoo on their lower leg as a reminder that they are always there for each other. the love and support have meant a lot over the years – and are more important now than ever.
“my support team keeps me going,” says kirsty, a costco customer service representative in pickering, ontario whose battle with covid-19 in january 2022 turned into something far worse than she’d ever imagined. “i have a tight group of friends who love me fiercely, they let me have a pity party for one day if i have a setback or get bad news, and then we flip the script and someone will show up with pizza or ice cream.”
kirsty turned 50 a few weeks ago with a glitter party of friends, coworkers and her family, including her oldest son josh who flew home for the occasion from new zealand. he’s getting married next february and kirsty plans to travel to new zealand for the wedding if her health permits. nothing is for certain, though, except the love of her family and friends.
asthma, covid and pulmonary hypertension
growing up in toronto, she had breathing trouble with what her doctor called “exercise-induced asthma” when she trained in swimming, gymnastics, track and then rugby in high school. she’d use a puffer sometimes to help recover her breathing. and when her household came down with covid-19, she was naturally concerned about her lungs. sure enough, when she contracted the virus, it hit her “like a ton of bricks,” she says. “i had a fever. i was delirious. i couldn’t stand up. but i did not need hospitalization.”
she was off work for about three weeks, and when she went back to her job, she wasn’t the same. “if i had my lunch bag or a coffee, i would have to lean on a shopping cart to get in and out of the store because my breathing was so laboured.”
she went to see her family doctor who prescribed medication and a puffer to help with her airways, but she wasn’t improving. finally, she ended up in the hospital emergency because she couldn’t catch her breath. the triage nurse tried to get her blood pressure reading but thought the machine must be broken because of the high reading. she tried a different machine that confirmed her blood pressure was “through the roof.”
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multiple doctors said that her severe shortness of breath and high blood pressure must be a result of long covid. that fall, she joined a long covid support group at a rehabilitation hospital where she met a respirologist who referred her for further testing.
while a breathing test came back normal, eventually she was referred for an echocardiogram. the day before the test on february 10, 2023, her intuition was telling her something was wrong. and within minutes of completing the test that next day, she was ushered into a cardiologist’s office, coming face to face with her own mortality. she recalls being in shock as the cardiologist told her that she did not have long covid, but her diagnosis was something far worse.
“she told me ‘you have a very serious, incurable, terminal disease called pulmonary hypertension,’” kirsty recalls, thankful that her partner keith was by her side to help shoulder the news. she called her costco manager, a close friend, when the respirologist wanted a list of her current medications (that she always had filled at the pharmacy at her workplace). “the minute i hear her voice, i lose it,” kristy says of getting her friend on the phone to help get the prescription notes. “she runs across the building to the pharmacy, gives her phone to the pharmacist and says, ‘talk to her,’ and tells me that she’s sending her husband to come and get me. she didn’t know that my boyfriend was with me at the time and she was so worried.” that’s what good friends do – worry on your behalf and help where they can.
pulmonary hypertension is a rare, progressive lung disease that affects the arteries in the lungs and the right side of the heart. the form that kirsty has is called pulmonary arterial hypertension where blood vessels in the lungs are narrowed, blocked or destroyed. the damage slows blood flow through the lungs.
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about 5,000 canadians have been diagnosed with pulmonary hypertension but the pulmonary hypertension association canada says as many as 10,000 have it and don’t know it. many people with pulmonary hypertension in canada spend two to three years trying to get an accurate diagnosis. and alarmingly, without treatment, the average life expectancy of a person living with pulmonary hypertension is less than three years.
kirsty mcgeown and two of her closest friends all have a ship’s anchor tattoo on their lower leg as a reminder that they are always there for each other.
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learning how to live with pulmonary hypertension
by the end of the appointment, kirsty’s cardiologist told her to brace herself. “she said, ‘the next few weeks are going to be test after test after appointment after appointment, so that we can get you stable.’ my blood pressure was so high because my heart was pumping so hard.”
she knew she wouldn’t be returning to work and credits her cardiologist with getting the ball rolling just in time. out of the four stages of her disease (stage 4 being the most advanced), kirsty says she is a severe stage 3 because her right heart is extremely enlarged. “it’s basically like if you put your thumb on the end of a garden hose, so you’re blocking the water. that’s how the blood is going through my vessels to get into my lungs. those vessels are closing.”
she was put on an oral vasodilator drug in pill form to help dilate the vessels, but she could only handle the side effects of severe headaches and joint pain for six weeks. she also had face flushing, as though she had a bad sunburn, which was what people noticed most. next came a similar type of drug that was given more frequently in a smaller dose to lessen the side effects. her care team at toronto general hospital added an at-home infusion drug to her treatment, but she accidentally overdosed on the medication and ended up in intensive care.
“i forgot to disconnect it from my body the first time i changed it, so i infused enough drug into me for a months’ worth in five minutes,” she explains, adding she called an ambulance and was admitted to hospital. she was assessed to make sure the incident wasn’t a suicide attempt.
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also, because of the rashes and pain from the infusion drug injection site that she had to keep changing, she was changed to a hickman line, which is a central catheter that runs under the skin for easier iv infusion 24-7. she has a permanent port in her chest.
there have been ups and downs, and her family and friends have been with her every step of the way, including a meeting this fall about the possibility of a double lung transplant. she’s waiting for additional tests so that she can go on the transplant waitlist. the problem is, while the transplant could cure her pulmonary hypertension, it also brings another set of problems with the anti-rejection medications that can cause kidney and liver damage.
her days now are about pain management and taking things slowly. “i still can’t climb a flight of stairs or walk more than 100 feet without getting short of breath,” she admits. “even showering is a huge task. actually, even getting up in the morning is a task.”
and her advice to others comes from her lived experience. “google is not your friend,” she says, advocating for people to ask healthcare professionals for information. “take a deep breath and allow yourself to accept the diagnosis and know that although this is an awful disease, treatments have come a long way and the biggest hurdle is getting the correct diagnosis and starting treatment.”
she isn’t on oxygen yet and doesn’t use a cane, but notices the “dirty looks” from people who see her using an accessible parking space (from passes provided by her doctor), so she also wants to create awareness about the disease and have people realize that how someone appears on the outside doesn’t tell the whole story. living with pulmonary hypertension has changed her because she can no longer be the support person in her circle.
“i was always a very social outgoing person, the first to offer help to a friend in need, the mom at every sporting event cheering on her kids. now i’m on the other side of that. i’m the friend in need. i have had to learn to accept the help people offer whether it be financial, housework, meals. it’s very humbling to be as sick as i am.”
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november is pulmonary hypertension awareness month. to learn more, visit the pulmonary hypertension association of canada and the canadian lung association.
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