Maureen Harper - phaware® interview 495

Maureen Harper, a CTEPH patient from Canada, shares her journey with this rare condition. She initially thought she had an infection in her leg, but further tests revealed enlarged pulmonary arteries and multiple blood clots in her lungs. After being diagnosed with pulmonary hypertension, she underwent a complex surgery in Toronto to attempt to remove the clots. Maureen continues to work full-time as a pharmacy technician, remains active with her family and Girl Guide unit, and maintains a positive outlook, choosing to focus on the positives rather than dwell on the negatives.

I am Maureen Harper, and I’m from Olds, Alberta and I’m a CTEPH patient. I had a lump on the front of my leg, on my shin. It looked like an infection, so the doctors put me on antibiotics. So I did six weeks of oral antibiotics, six days of IV antibiotics, and it kept growing. They decided it was not an infection, so they sent me to a dermatologist. The dermatologist was like, “Well, that’s weird.” And by this point, of course the lump is gone because that was six months later. So, he’s like, “I think it might be something else.” He sent me for an X-ray. The X-ray showed I had an enlarged pulmonary trunk, so he’s like, “Oh, you’re not mine.” He sent me to a cardiologist.
 
The cardiologist put me on the treadmill to do a stress test, and my heart did great and my oxygen just kept dropping and dropping and dropping. So, they pulled me off the treadmill and I’m like, “Just give me a minute. I recover really quick. I can pop back on and we can finish this. She’s like, “No, no, you can’t.” The cardiologist was like, “Wow, that’s weird. Let’s do a V/Q scan and just rule out pulmonary embolism, so make sure you don’t have blood clots in your lungs.” We went into the V/Q scan. My husband and I were sitting there together and we’re waiting for results. They’re like, “Yeah, the radiologist wanted to talk to you. We’re going to move you to this waiting room.”
 
They moved us to a waiting room by ourselves. Then, some other people got moved into our waiting room. They moved us to another waiting room, and some more people got added to that waiting room. So, they moved us to a third waiting room. I looked at my husband and went, “Something’s wrong.” He was like, “What do you mean?” I’m said, “They just keep putting us in waiting rooms by ourselves.” He was like, “Oh.” The radiologist came out and said, “So you’ve got embolisms in your lungs and a lot. How are you feeling?” I’m like, “Fine.” 
 
I got to go see my cardiologist. He said, “Yeah, you’re not my patient. We need to treat you now.” He put me on a blood thinner and said, “You need to see a pulmonologist.” That’s how I ended up in the PH clinic. I had one meeting with them and they immediately wanted to do a right heart cath to see what was going on. I was diagnosed with pulmonary hypertension. Then, a little while later, we did some more testing and that’s when we figured out it was CTEPH.
 
My doctor in Calgary actually didn’t think I would qualify for the surgery, just where all my clots and stuff were, but they sent my stuff off to Toronto anyway. It came back saying, yeah, they think they could help. I was originally booked into surgery at the end of August. I’m said, “Oh my God, I can’t do the end of August.” My daughters had just graduated. They were starting college, and I’m like, “They can’t start college without mom.” I still need to be there in case they need some support or the paperwork didn’t go through or whatever. So, we bumped it until October.
 
It all kind of goes really quickly. You get flown out to Toronto from Alberta, and we flew out Friday, spent Friday night in a hotel. Saturday, I got admitted into the hospital to start heparin therapy and blood thinning therapy to help make sure I’m safe for surgery. I was there Saturday and Sunday. Monday morning around 6:30, they came in and said, “It’s time to go.” They roll you down. The surgery eight to nine hours. Then, you’re sedated for 24 hours just to give your body a chance to recover. My husband did not enjoy that 24-hour period. I did not wake up from sedation really well. They took three different tries to get me to wake up. 
 
Then, you start the recovery process. We were in Toronto for nine days, flew home. I did really well for the first week or so, and then my daughter came home from work one day and looked at me and said, “Mom, you don’t look very good.” I said, “I don’t feel very good.” I’ve got a headache, and I’m just off. She said, “All right, let’s go.” She packed me off to the hospital and they took one look at me, went, “Well, get comfy, you’re staying.”
 
We were in a small hospital. I spent a week there and came home for a couple of days and got sick again. That’s when I ended up in the Peter Lougheed for a week. It was a bit of a bumpy ride, but at least I was home for the bumpy part of it. The part in Toronto went pretty smooth. After we did the couple of weeks in and out of hospitals, I actually did really well. I was still working. I worked through the entire process. I would work an eight hour a day and then I could walk four kilometers at night. I was feeling great and doing really well for about 18 months, and then I couldn’t walk anymore.
 
They did another right heart cath and discovered that my pressures actually had gone up and instead of CTEPH being a cure for me, they were able to get out the big clots, but there’s a bunch of little clots that are very distal, so very deep in my lungs, and they couldn’t get to those. So, those ones get to stay, and I still get to have CTEPH. Medically, they called the surgery unsuccessful.
 
My husband and I kind of batted that around a little bit, and he said, “It wasn’t unsuccessful. They took out massive clots out of your lungs.” Even though my lung didn’t improve and doesn’t work like it’s supposed to, at least those clots are out of there. So, I might still have little ones all through, but I still have less clot that’s in there. My angiogram before surgery and post-surgery, according to my doctor, looked pretty much the same, so it really didn’t make any difference to my lungs, but at least I’m not fighting the extra clots that were in there.
 
Medically going forward, I am on oxygen therapy. I’m on Adempas, which is made specifically for CTEPH, and I’m on ambrisentan, which also works for PH. We’re just trying to see if we can figure out a way to figure out my symptoms versus what my blood work says. My blood work says I’m doing real good, but going for a walk says I’m not doing real good. 
 
So not much changed in my life. I work a 40-hour work week. I’m a pharmacy technician, so I’m on my feet all day in a very busy pharmacy. I have three kids. They’re all technically grown-ups now. Then, I have a Girl Guide unit and we do crafts and activities. We go to camps and do everything all the other Girl Guide units can do, and we just kind of keep carrying on like we normally would.
 
If I’m taking my Girl Guides camp or anything, we go on hikes. Previously, I was able to carry my tank in a backpack, because I didn’t need as much oxygen as I do now. Now, I have my tanks in a rolly cart and it just rolls behind me. We start at the beginning of the year with, “This is my friend, I call him Big Tom.” He comes everywhere with us and he helps me breathe, and they don’t bat an eye at it. Hopefully, from that what they learn is people with disabilities can do stuff too. There’s nothing holding us back. We can do whatever we want.
 
I guess it was never an option for me that I wouldn’t continue working. I’ve always worked my whole life. The company I was with, I’d been with for many, many years when I got diagnosed. I’d been there about 11 years when I got diagnosed. My pharmacy team and my owner were fantastic and wanted to know what they could do to help. For a lot of the time, it didn’t make any difference. I pop a couple pills a day and they don’t know about it or they don’t do anything about it.
 
As things have progressed, it has changed. I took time off to go for surgery and stuff like that. Then, when I got put on oxygen, we put a concentrator in the pharmacy and ran tubing. Then, when I could go to a tank, which was easier, I put it in a backpack and I carried it in a backpack and COVID had hit. So when I got put on oxygen, I was wearing a mask. I wear my tubing down my front because I trip on it because I’m a bit of a klutz. Lots of customers didn’t even know I was on oxygen until we stopped wearing masks a couple of years ago. Then, they were all really surprised to see that that’s what I had been doing, but to me, it was never an option to quit, because I didn’t feel sick enough that I needed to quit.
 
As a support team, I’ve got my husband and I’ve got my three kids and they’ve always got my back. They’ll do whatever I need. If I can’t carry something, then they carry it for me. When I was using tanks at work, my son would bring my extra tanks in, so there was always tanks there for me to switch out. 
 
I’ve been a part of PHA Canada since probably 2018 or so, but I felt like a lot of those people were sicker than I was. I didn’t need their support or it felt like I didn’t need their support. I was always kind of in the background on the Facebook group, just kind of chilling and reading. Most of the people weren’t working and most of the people were having a lot of issues and I wasn’t, so I didn’t feel like I needed the extra support that they had.
 
I’ve always been a busy person, and I find if you’re busy, then you don’t have time to kind of dwell on the what ifs. PH is not my only chronic condition. I had brain surgery 10 years ago. If you Google the stuff, if you look it up online, it’s terrifying. In my brain surgery group, everybody’s terrified of dying on the table and I’m like, “Oh, that didn’t even really dawn on me, because I trust my surgeons.” So through the brain surgery, through the lung surgery, neither time did it dawn on me or did I dwell on the fact that this is a life-threatening surgery, I could die on it. During the CTEPH surgery, the PTE surgery, they actually stop your heart and your lungs quite a few times as they clean out the clots, so you’re technically dead on the table, because there’s nothing flowing through your system.
 
But I didn’t look at it that way. Somebody else told me, “You’re dead on the table.” And I’m like, “What? No, no, they’re just busy working. They just need a clean field.” It’s all mentally how you look at it. As a pharmacy technician, in the medical field a bit, I have some more knowledge than maybe the average person, so it didn’t scare me as much as some other people who are maybe not in the field. 

I’ve dealt with a lot of negative people in my life, so I find that you can get up every morning and choose to be happy or you can choose to be miserable. I just choose to be happy. I’m always kind of trying to look for the happy outcomes or the happy side of things in order to keep things positive. If you choose to be miserable, you can have a really miserable life, but I’ve decided to be happy and try to find the positive in everything.
 
I’m Maureen Harper and I’m aware that I’m rare.

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