I’m Aware That I’m Rare: Kathy Downey (492)
the phaware® interview
Canadian patient, Kathy Downey, recounts her four-and-a-half-year journey with pulmonary hypertension (PH). Kathy shares the challenges of living with the condition, including reliance on high-flow oxygen and the emotional toll it has taken. Despite these obstacles, she has become a passionate advocate, educating others about PH and serving as an ambassador for PHA Canada. Throughout, Kathy highlights the crucial support from her husband and the difficulties caregivers face.
My name is Kathy Downey. I am from Calgary, Alberta. I have been a PH patient for four and a half years, and it’s been a fun ride. When I first started feeling that something was wrong, I was in San Diego. I was there on a medical conference. We were at a nice little Italian restaurant and we had to climb over all those canals that San Diego is famous for. Everybody was pulling away from me. I thought, well, I didn’t drink that much, I didn’t eat that much, so what’s the problem? I am so out of breath. So, I spent most of that conference just trying to fake it till I make it, because even though I’m with all these doctors, they’re all forensic pathologists, so I don’t need their help yet.
I thought, okay, Kathy, when you get home, you are going on a diet. You are going to exercise until you get this fat ass in control, and there ergo, your breathing will be better. We went back home. I talked to my family doctor. Of course, she was on board with the losing weight and all that. As time progressed, things progressed even more. I got to the point I was no longer working for the medical team. I was working for the faculty of nursing at the University of Calgary. I was trying to walk from building to building as part of my position. I would be taking my phone with me, not to call an emergency, but to be able to catch my breath, and hopefully nobody would notice. One of the worst times was when we had construction going on in the little area where our buildings were, so we had to walk outside in minus thirty-something degree weather, in Celsius. The wind was blowing and it was so cold. I couldn’t catch my breath for love nor money. I thought, well, I’m just going to lay down here and die. I’m done.
Of course, being a woman, we also have other issues that might be a problem. I was of the age of perimenopausal. I was bleeding a lot, so the tiredness and the short of breath could be attributed to that. Finally, when I was able to find a gynecologist that would actually do surgery for me, I thought, oh, I’m going to get this out of my body and I’m going to be a-okay, I’m going to be back to the land of the living. But it didn’t help.
So, I went to the ER. Not multiple times, I tried not to go, but when you’re not breathing and you think, well, I’m going to go to the ER and they’re finally going to figure it out. But I would get doctors saying, “Yeah, you’ve got something, but I don’t know what it is.” Or before I had my hysterectomy, one doctor said, “You can’t buck the system by coming into emergency and hope that we’re going to pull your uterus out of your body.” He didn’t even attribute any of my concerns of, “I wasn’t caring about this, I was caring about my breathing.”
I went back to San Diego the month of February 2020. I still was having troubles. I got onto Santa Monica Beach. I got halfway across the beach and I thought, well, here we go again. I’m going to just sit down in the sand, at least it’s warmer, and I’m going to die here. It kind of put a damper on that trip. I mean, anybody who’s been to San Diego and seen the zoo and the hills in that zoo, let’s just say I did a lot of sitting on benches while my daughter and my husband went and did all the other stuff.
When I got back, I started having pains in my arms. I couldn’t figure out what’s that from? Is that because I flew? It’s a three-hour plane ride. I got in there, I got a ER doc that actually listened. He finally did all sorts of tests on me. Meanwhile, (my husband) Don had to go back to San Diego. He was staying with our friend who’s a forensic pathologist. I was writing, ask Evan, our friend, what should I be asking this ER doc, because I have his attention? Evan says, “See if you can get a copy of your medical records.” I got medical records, took pictures and sent them to Don and Evan. He says, “Yeah, ask them why you have pulmonary hypertension.” He’s a doctor, it’s great that he knows a little bit about this stuff, but I’m saying, “No Evan, it’s not pulmonary. It’s cardiology, because my blood pressure is bad,” and everything like that.
While I was waiting for Evan and Don to write me back, I was looking through my medical records and down in the corner, in 2017, and this is 2020, it says, “pulmonary hypertension?” Nobody had gone any further in the speculation that I may have had pulmonary hypertension three years prior to when I finally got diagnosed. The short end of the rest of the story is that within a week I was back to see my respirologist, who was a great person of, “Lose the weight and you’ll feel better.” All of a sudden, he was eating his words and he had me in the PH clinic.
Within a week, I was a patient of Dr. Jason Weatherald. I just went through the system really fast. Unfortunately, by the time I had my right heart catheterization, he came in and said, “You have this. You should be in the hospital, but you can’t stay in the hospital, because the world is shutting down this evening for Covid.” We went back home and it’s like, okay, now I’ve got to deal with this pulmonary hypertension thing. Don’t Google it. Covid, what is this Covid? Covid wasn’t even on my radar, because I was so busy working with what’s going on with me, and oh, I think I see a glimmer of hope that somebody knows what’s actually wrong with me.
It was hard for the first few months of dealing with not being able to ask the questions that I wanted to ask, and trying to navigate both of the huge issues that were in my life at the time. But I am very grateful to PHA Canada. I’ve become an ambassador. The Facebook page, the Canadian PHriends Facebook page is a wonderful place to go, because you’re with friends. It’s private. We did a lot virtually for two or three years, which was also nice to be able to have that camaraderie.
About a week after I got diagnosed, I was going back for an assessment and I said to Dr. Weatherald, “I am still finding it really hard to breathe.” I already was put on, I think, two oral medications by that time. He took me for a little walk around the office and he said, “Yeah, you are quite low.” He gave me a list of oxygen providers in our city. I went home and I picked one. I phoned them and they came in, and their assessment had me on eight liters per minute already.
I have been on relatively high flow since the very beginning. I just celebrated my four and a half year anniversary. I am now currently at 22 liters per minute, because my condition is steadily getting worse. The responsibility of oxygen, is knowing or being able to estimate, how long are you going to be out? How many cylinders of oxygen do you need? What will you do if you get into a snare in the traffic and you’re at a standstill for… 20 minutes, could even be detrimental. All these things are going through your mind as you’re going out.
You’re not able to totally relax. In the early days, I was able to go out and have coffee with my friends. I used to drive. I used to go to my appointments by myself. Then, as the oxygen started mounting and mounting and mounting, I found that I would get dizzy. It was a lot lugging the tank in and out of the car. Trying to do that again in -20, -40 degree weather was not fun. My husband ended up taking up that duty and he’s been great. But, the one time I had to do it of late, my son and I were going to the appointment and I’m so used to Don preparing everything for me, that we took what we thought would be enough. But then, we got unsure of where the appointment was, a little lost. Then, by the time I got to the appointment, I was already half done with all the oxygen that I brought.
When I was on eight, it would be scary, but I knew I could get home even if I ran out of oxygen. At 15 plus, there’s no chance. I’ve gotten to the point now that if I’m without oxygen for even three minutes, I think I’m going to blank out. I always prided myself, they always ask in a clinic situation, “Have you ever fainted?” I say, “No, I’m not a fainter. It must take a lot to make me faint.” Well, I found out five minutes without oxygen can be that level that makes me pass out.
I’ve been blessed with the greatest caretaker in the world, and many people in the Calgary PH community know us as the couple, the powerhouse couple. Not because we’d wanted it to be, it just happened that way. I don’t know how I could do it on my own, all this, with the appointments, the hospital stays, the oxygen and everything. I have needed Don along the way, mental support, emotional support. Caregivers get a bum rush in many ways that they are not supported by our government. They are only supported if they had a job and had to leave it, and can go on unemployment benefits. But when your husband, or partner, or caregiver has to start looking after you and they’re self-employed, and no longer can do their job, there’s diddly squat for them.
Most people on PH, for me anyway, I was too far gone by the time I was diagnosed, to be able to ever work again. You feel that emotional tug of, I want you to go and work and I want me to go to work, but I want you home in case something happens. So my hat’s off to the single people who have to do this by themselves and juggle everything, because he contacts my disability for me, because sometimes they just talk above me. I don’t know if it’s the disease. I never felt so dumb until I got this disease.
The funny thing, I guess, is when I used to have to go for blood work, because I’m on such high flow and during Covid, he couldn’t come with me with the extra oxygen. He would sit out in the car and if I had to wait anytime, because even though I had an appointment, I’m still waiting an hour. I would text him and say, oh, I need oxygen. He would come in and assure everybody that he was only there for a second or two. Then, I had to go in during the winter months. I said, “Let’s just go in the morning when they first open up, because then it’s done and we can get on with our day.” They open up at 06:30 in the morning. I’m sitting in the car where it’s warm, and Don’s standing in the lineup with everybody else with his toque, and his mitts, and everything. This is the sort of stuff that he does for me. Now he does all the cooking and house cleaning. I’m so grateful for him. But I’m also sad for him that he’s had to do this.
When I was diagnosed, before that, I always wanted to be an authority on something. We’d all like to, not necessarily die the way Matthew Perry died, but he had remembrances and accolades and all that. I don’t think I’m going to get that, but I wanted to be an authority on something. When I got my disease, I said, I am going to be an authority on this. I am going to learn everything I can about this. We did that. We studied, we talked to people, we read reputable articles and all that sort of stuff. My main thing was to educate.
First, it was to educate family doctors, because they’re the ones that see us first and they don’t have a clue. It’s not their fault, because they are a general doctor. They can’t know everything. Even specialists don’t know everything either. Throughout the last four years, I make it a point to introduce myself to newbies on the Facebook page. I host a monthly meetup that’s virtual across Canada. If somebody’s in the hospital, I’m going to write to them and say, “Hey, what are you doing? Everything going well?” Blah, blah blah. Then, somebody said, “Are you interested in becoming an ambassador?” I thought, oh, I don’t know if I can do that. I looked at Don and I said, “Do you want to do it?” He said, “Yes, let’s do it,” because then we have another way of getting the education out.
So, we became ambassadors two years ago. Then, we were invited to be on the CRAVE panel, which talked about patient involvement in trials of new drugs and procedures. So, we’re being sought out, which is really nice. I think I’m close to being that authority in something. So, if anything else, when I’m gone, somebody can say, “Oh, that Kathy, she knew everything.”
I am Kathy Downey, and I am aware that I am rare.
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