I’m Aware That I’m Rare: Vanda McLean (427)

the phaware® interview

Canadian pulmonary hypertension patient, Vanda McLean was forced into early retirement due to her diagnosis. She discusses how she navigates depression, the importance of support and how she faces an uncertain future.

My name is Vanda McLean and I’m from Orillia, Ontario. I was diagnosed in 2016 with idiopathic pulmonary arterial hypertension. I got involved with PHA Canada almost right away. I was nursing full time at our local hospital. I’m a geriatrics nurse. I started finding my 12 hour shifts very difficult. Because of my age at the time, I was able to rig it so I had one less shift a week. It just lost some holiday time, but it was worth it. I found that walking up the stairs to get to our floor, I was really winded and short of breath. Bending down to do things was really difficult, so I left the hospital and started teaching at the local college part-time with nursing and the PSW program.

I always walked up the stairs. It’s going to seem really weird, but my favorite washroom was up the stairs and down the hall and I couldn’t make it. By the time I got there, because darned if I was letting any students see me struggling, I just was in so much pain and in a panic to try and get my breathing right. At that point, I asked my doctor to schedule a stress test, as the nursing part in me was kind of going, “Let’s figure out why I can’t walk up the stairs suddenly.” That was in March of 2015. It took till September to have an appointment. But before that, something else started going wonky and as a nurse I caught it, and my blood pressure was up at 185/110, dangerously high. As my pharmacist said, “You’re a walking time bomb right now.”

So I took my months of data and showed it to my doctor and things started there, but it was six months after the stress test before they even called me to go back in and see the cardiologist. I wasn’t going to go stubborn me think six months can’t be serious. My doctor said, “Something’s wrong. I don’t know and I don’t understand it. Please go.” That’s the first time I ever heard of pulmonary hypertension. Everything seems to take long, but to me waiting that long, I figure something serious usually you hear fairly quickly. So six months didn’t seem like something that would be serious, so why go? However, it was a good thing I did go.

I was moving at that point. We were getting ready to move west and to go and get the other tests that were needed was going to take months. So they said, “Nope, do the move. Make sure you have a doctor,” which of course is a trick no matter what province you live in. Fortunately, our daughter who lives out there, found a doctor who took us on knowing that there were health issues with me. She got me into the PH clinic out there very quickly.

By the end of the year, I had gone through the right heart calf and the blood work and the ECGs and the echoes. I was on double oral therapy for this. So it moved very quickly. With my nursing because I work as a geriatric nurse, my first reaction to being told pulmonary hypertension was to go and Google it and start getting some information and research it, because that’s what I always knew to do. If my patient had something wrong, I researched it so I knew how to deal with it. So I just did the same thing for myself. When I first had all the diagnosis done in Alberta, I was teaching at the college. Walking any distance or any speed became more and more difficult. So I only ended up working two semesters because the second semester I could only do half of it. I had to tell them about what was going on, because I couldn’t do the second part, which was going to be full-time clinical, which I had been looking forward to. So that was frustrating. So they didn’t take me back on the next semester. Basically my career came to an abrupt end that I wasn’t prepared for and the doctor had me sign up for disability. It’s a hard blow. It’s hard to accept that when you like your career.

My husband was already retired when all this started. He is amazing. He is so supportive. He just does anything. He’s taken over doing all the vacuuming in the house and things that I cannot do anymore, like carrying stuff for me. He’s very helpful. I think I put him through the test actually in 2019 when my health went downhill quite severely. That was hard. I ended up on oxygen that January and by April I was on full-time oxygen. By the end of July, beginning of August, I had to go through the process of, “Do we get a transplant? Am I eligible?”

That week probably was one of the hardest weeks, that week at testing that I’ve had in the whole of this diagnosis. It finally broke me. It’s mentally draining and physically draining. By October, I was listed for a transplant. They said there was no other route at that point for me and to get my fares in order. That’s really hard to tell somebody. I started writing down what I want for a funeral, which is all set and done so my family can pick it up and know what I want.

Talking with our pastor, I discovered after the fact that my husband also talked to our pastor because he was having to cope with this and not show it. Fortunately for me, I have had a lot of people praying for me and by the end of November, beginning December, my heart strengthened. I’m still around using my old lungs with oxygen all the time, but he’s been right there beside me. I don’t know what I would do without him. I just live as I can live. I mean, do I put things like that behind me? No. Every now and again, I’ll look at certain pictures and I’ll stick them away in the envelope because I’ve told my daughter I want her to do the video. Every now and again I throw pictures in that I think are appropriate or she’d like in the video.

I’ve got elderly parents and my dad died recently and I was at a point where it was like, “I’m not to die before them.” My mother is still alive. She’s 96. She’s just a sweetheart. I still look at her and go, “I have to outlive you somehow.” I live every day as God gives me the days to live, and I know that there’s going to come a time when things are going to go downhill again and I am on the sideline for the transplant, so they monitor me as well.

When things go downhill, I go right back into the call system for the transplant and they know that side is there. Does everybody make it through transplant? No, but you have to keep positive. If you don’t keep positive, it’s really easy to become really depressed. That doesn’t mean that I don’t have days where I get very frustrated being attached to oxygen cords and go outside with the cord on from the house and get pulled back. You can’t go as far. You can’t walk as fast. You can’t do things that you used to do. I can’t run with my grandson. I can do lots of things with him, but I can’t run and play with him or my granddaughter. But we work around doing things. We’ve come up with a way to travel. I can still go out in the boat fishing, so you have to pick up and look at what I can do and work on the positives or life will become very depressing.

You need somebody you can speak to freely. That’s where my husband is, my real rock. PHA Canada has been a huge deal for me. They had to make changes during COVID, and one of the really positive changes that came about was our monthly meetups, our Zooms. They’re something I put on my calendar in advance so I don’t miss it. We meet so many different people across the country. We also have new people come on, and one of the things we do is we say, “Ask anything,” because out of the group you should be able to get most of your answers. There is nothing too small or too stupid to ask. The other thing is we have a Facebook group and the same thing on there, you can ask anything and nobody puts anybody down. Everybody faces their battles a little bit differently, but we’re all going through the same thing.

What keeps me going now is I’ve kept going with the exercises I had to start doing for the transplant. They’re very firm about that, so I’ve kept it going. I think between that and weight loss and my faith, that’s what’s kept me going this long and will keep me going as long as I’m supposed to. Those are important things. I know a lot of people say, “There’s no way I can exercise.” You do it in steps and you build it up, but it keeps your body in the right shape it needs to fight, because it’s really easy to stop walking. I used a walker at one point and I’m not using a walker anymore, and it takes a lot. There are days I just kind of look at the equipment and go, “I don’t feel like doing this,” but I forced myself to because it keeps me alive.

I’m Vanda McLean and I’m aware that I am rare.

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