Pulmonary hypertension (PH) warrior, Kathryn Downey, has been stuck at home for over a year, but has been able to keep busy by raising PH awareness across Calgary.
It was eight years ago when Downey first noticed a shortness of breath while doing simple, everyday tasks. At first Downey did not think much about her breathing, but after a while, her concerns grew.
Three years after her initial symptoms, she was at a work conference in San Diego when she really started to think something was wrong with her breathing.
“All the people I was there with were walking ahead of me and I was struggling so hard to keep up with them. I was finding it harder and harder to catch my breath,” says Downey, who decided it was time to seek help from medical professionals.
“I went back home and said to my doctor, ‘I think there’s something wrong.’”
After that first meeting with her doctor, it took five years and the help of numerous specialists, to finally be diagnosed with Idiopathic Pulmonary Arterial Hypertension (IPAH), which is a form of PH.
PH causes inflammation or scarring of the pulmonary arteries creating high blood pressure in the lungs. If PH is left untreated or undiagnosed, the chance of heart failure can climb exponentially.
Difficult To Detect
Unfortunately, it can take several years to diagnose individuals living with PH because the condition shares many symptoms with other well-known pulmonary diseases. This often leaves PH misinterpreted and overlooked.
“Especially in PH, it takes three to five or more years to get diagnosed because they keep on getting misdiagnosed with so many other similar reasons to the symptoms. So many people are being missed because they’re not realizing that they actually have PH,” says Downey.
PH can also be hard to diagnose because the results from basic respiratory tests, typically performed by a family doctor, usually come back normal. Due to the test results, PH patients are diagnosed with incorrect conditions.
Originally, Downey was told her symptoms could be caused by asthma, chronic obstructive pulmonary disease (COPD), or even her weight. PH was barely discussed.
“I went to a respirologist and he pretty well said, ‘Well the reason why you’re having shortness of breath is because you’re fat. So lose the weight and you’ll be fine.’ So in a year I lost 60 pounds and was still having troubles, if not worse troubles with my shortness of breath,” says Downey.
Lung specialist, Jason Weatherald, has been the physician treating Downey for the last 18 months. During his time as a lung specialist, Weatherald has become absorbed into the PH world and its patients. Downey’s difficulties in getting a proper diagnosis was of no surprise to Weatherald.
“That story is pretty common. In studies from other countries, the average wait between when people first start seeking care and when they actually get a diagnosis is two years,” says Weatherald.
“A big part of the reason is that a lot of people don’t know much about it. So, for instance, a family doc might only see this once in their career. So they don’t spend a lot of time learning about it or they may have just never heard of it. It’s not a common condition, so unless you’re a specialist, you might not think about it.”
On March 13, 2020, Downey was officially diagnosed with IPAH. The news could not have come at a worse time, as it was the same day the world began shutting down due to the COVID-19 pandemic.
Full of questions and stuck at home, Downey was soon struggling with both her new life and the pandemic.
“I know that my doctor was very aware of what was just about to happen that evening as things were going to be shut down. So, we didn’t really get that chance to sit [down] and say, ‘OK, now what,’” says Downey.
It was not just Downey who was impacted by her recent diagnosis. Don Downey, Kathryn’s husband of 27 years, also had troubles coping with his wifes diagnosis.
“Well, other than the standard ‘Holy crap,’ it was devastating. You suddenly realize that your whole world has changed and everything that you thought, your plans for the future could be just thrown right out the window,” says Don.
During times of hardship, like the pandemic and Downey’s diagnosis, people look to family and friends for love and support. However, this has been difficult for Downey as her family and friends have been unable to visit her.
While her friends have been keeping in contact via phone calls and social media, Downey admits that it’s not the same.
“The world shut down, so friends stopped coming over. We did a few FaceTimes or whatever, but it’s just not the same. I am the type of person that likes to have people over to my house, have a cup of coffee or a glass of wine and sit down and chat,” says Downey.
After the first few months of lockdown, Downey’s mental health began to dwindle. The pandemic and diagnosis had begun to take a toll on the 53-year-old.
“It’s little things that, you know, seem simple enough, but they seem like mountains sometimes to me when I get up in the morning and think, ‘Oh, here we go again,’” says Downey.
As the months passed Downey became more used to her life at home. Instead of worrying about what the future held, she began to focus her energy toward supporting the PH community.
“I decided a long, long time ago in my career that I wanted to be an authority on something. I wanted to go down in my infamy as an authority. Nothing [popped] up out of that over the years until this diagnosis, until this year of being able to go nowhere. I decided this is my time,this is where I will advocate. I will do everything PH, if possible. Educate, get the word out, you name it.”
While quarantined at home, she began raising awareness for PH. From TV and radio interviews to social media livestreams, Downey began spreading the PH word.
“These are little things that I’ve been trying to do, and that keeps me busy, and doesn’t necessarily keep my mind off of PH but changes my thought direction. I don’t see it so much as ‘Here, here’s a life sentence, do what you will.’ [Instead] here’s a diagnosis, how can I educate people about this,’” says Downey.
Continuing to raise awareness, Downey turned to a more creative outlet. She began to make PH lung keychains.
The idea to make purchasable key chains started from Downey’s realization that she could no longer travel at will. Instead of traveling herself, Downey wanted to make a lung-shaped key chain that her family and friends could bring on their own travels.
“I said to myself, ‘My lungs are holding me back from traveling, but how about if I make some lungs and put them on a key chain.’ Because I know a few of my friends, who are avid hikers, said, ‘Well, we’ll take you with us,’ and I said, ‘Wouldn’t it be better if I had something that they physically could take and it would be like I was actually being there?'”
After the original PH key chain was made, Downey went one step further. In each key chain purchased, she tucked the name of a person battling PH in the key chain, so the recipient could symbolically take a PH warrior on their journeys.
“The thought process is somebody with good lungs could take somebody with bad lungs on their trip and maybe appreciate that they have the ability to do all this, that the rest of us PH people can’t,” says Downey.
Don also praised the work his wife does for the PH community.
“I think it’s great that she’s been able to focus the uncertainty into saying, ‘I’m going to beat this thing no matter what. I’m going to do everything I can to help beat it,’ says Don.
In Don’s eyes, spreading awareness for his wife’s disease is crucial.
“Any awareness that can be made where people are going to get behind it and actually get some donations in towards its research makes a big difference,”says Don.
Raising awareness has also become very important to Downey, as she believes her PH could have been spotted sooner if her condition was more well known. By spreading the PH word, Downey plans to make her condition a more household name in the medical world.
“There’s so many of these invisible diseases that nobody knows about [and] are swept under the carpet, and it’s not the fault of the people that have it. It’s the fault of somebody not going out and saying, ‘Hey, this is what you should be looking at,’” says Downey.
Awareness within the medical world is equal if not more important than awareness among the general public. Many family doctors are unaware of PH and how a fast diagnosis can benefit a patient who is suffering with it.
Weatherald believes teaching doctors about PH and its symptoms is a necessity.
“It’s important for the general public to know about it, but especially primary care doctors, so family doctors to be aware of this disease so that they think about it in the list of possibilities, so that patients can get diagnosed earlier,”says Weatherald.“The real part of a patient’s journey where we can make an impact is increasing awareness among family doctors and increasing access to the tests.”
While Downey has put her diagnosis behind her, she does hope an increased awareness of PH can shorten the time it takes for others to be diagnosed.
One way people can show support and raise awareness for those battling PH can be as simple as wearing the official PH awareness colour, Periwinkle. Although it may just seem like an ordinary colour, periwinkle represents much more to people like Downey.
On May 5, World PH Day, both the Calgary Tower and the Reconciliation Bridge were lit purple in support of PH and those battling it. For Downey, the gesture left her speechless and overjoyed.
“My heart was so full. I was so happy. I felt like Calgary was with me. Whether or not more than a handful of people really knew what lighting up this tower and this bridge meant, I just felt that my city, that I was born in and that I grew up in was actually thinking about me and PH and the cause,” says Downey.
As for life after the pandemic, Downey plans on continuing with her PH key chains. But first, Downey is excited to reunite with her girlfriends.
“I want to go out, get a couple bottles of wine, sit somewhere and have my girlfriends or anybody come and join me in a drink and just sit and relax,” says Downey. “And I want to hug. I want to hug everybody.”
If interested in purchasing one of Downey’s PH key chains, feel free to contact firstname.lastname@example.org