Pulmonary Hypertension

The phaware® interview

Canadian pulmonary hypertension patient, Stacy Physick was diagnosed with PH in 2011. She immediately got her affairs in order, believing she only expected to survive 1-3 years.  Now, 10 years post-diagnosis she shares her journey and her conscious decision to lead a normal life. Stacy Physick: My name is Stacy Physick and I'm in Chilliwack, BC, Canada. It took a while for my pulmonary hypertension diagnosis. I actually didn't start medication until 2011. My connection to PH is they believe it started because I had shortness of breath and a bunch of different symptoms, and I had a bunch of different tests done. Finally my doctors decided it was PH, but what they believed it was caused from was PVOD, pulmonary veno occlusive disease. They thought that was going to move fairly rapidly with me. When they finally decided to start medication, it was just to help slow that progression, hopefully, as well as the PH progression. I also had open heart surgery when I was four and a half years old and I'm now 63. It didn't stem from that. I'm left with a VSD, a ventricular sepal defect. I also have a small ASD that I've developed over the years, but I've held real stable my whole life with that. I've always been checked by a cardiologist. So that's really where my journey began is because of my breathing issues and shortness of breath and tiredness and things like that. How I knew the diagnosis was happening is I see a cardiologist on a regular basis. I've seen him annually for basically my entire life. He started with a change in my pulmonary pressure. He noticed, and he said, "You know, don't worry about it yet. It might be okay." I had been at that point already identifying that I had shortness of breath. I wasn't remembering things quite as well. I was a corporate trainer and I also did a lot of presentations, pretty much daily. I did that for a few years. As the years progressed, I started getting shorter and shorter breath trying to talk. So he had noted this pulmonary pressure increase. Then what he did is he said, "We'll just watch it." Then six months later, I came back for a second echocardiogram and the pressures were even higher. Then my doctor sent me to a pulmonary specialist and that's when they did some more testing. I had pulmonary function tests, another echo. I had a heart catheterization and that's when they determined that, "Nope, you've got pulmonary hypertension." That's where it started from. The whole reality at that point was kind of a shock to me because he continued to do other tests and then he did the CT scan found out that looked like I was full of PVOD in my lungs. Then the diagnosis came that's likely what it was. We were going to treat it as that. He had done all the clinical testing he said minus the fact of a lung biopsy, which would be the ultimate check off point to say that definitively it was PVOD. Then they set me up with a thoracic surgeon and it was at that time based on my pressures too, they said it was too risky to even do the lung biopsies. So I sort of started with that. Then what they told me was, "One to two, three years at the outside, because there's no treatment for it, there's no way to cure it and there's no actual direct treatment for the PVOD." So what they wanted to do was treat my pulmonary pressures and try to slow those pressures, which would hopefully slow the progression of the PVOD. They also told me when I was starting, that the drugs that they were putting me on may actually exacerbate the PVOD and it could move faster. So it was a lot to take in because I'm thinking, "Oh great. Now I've got to get my life in order and do all this stuff." Because I had a clock. So it started from there, but I started the medication and that was the beginning of it. On a day-to-day basis, I was just trying to deal with the reality of the diagnosis that I was given. I was still working full time. As I said, I'm a corporate trainer and I did a lot of presentations as well. What I found is I had already been struggling with tiredness and shortness of breath. So I spoke to my work and we sort of slowed down the volume of presentations. Sometimes I would do eight hours of presentations a day and training and I would just run out of breath. I couldn't do it. Then I would start coughing and I couldn't stop coughing. As things progressed, I found my memory wasn't so good either, which was really affecting my presentation. So I was very fortunate. I had the support from my company and my HR department. I modified what I was doing. I was able to work for about three years before my cardiologist and lung specialists, the PH specialists, both said that I needed look at cutting back on my work because we were having trouble controlling my pressures at that point. So what I did is I looked to going part-time. I did fight it for a while because I was still fighting my diagnosis, I'll say. I had made the decision early on that life for me was going to be normal, especially for me and my family. I didn't want to show I was ill or had things wrong, for the mindset of my family and my grandchildren. So that kept me working a lot longer than I probably should have. But I finally did go off on disability three and a half years after diagnosis. I actually was directed right away, once I met the pulmonary hypertension specialist, he and his nurses did identify that there was the PHA Canada Facebook page. I used that and it's been very helpful. I learned a lot. I've posted a lot and especially over the years because the medications they put me on clearly have slowed my diagnosis because I'm still here. The insurance in BC is different other provinces. For me at the very beginning, when I was put on the medications due to the high cost of the first medication that they put me on, I really struggled financially because my extended plan through my company only covered a limit. I hit that limit basically within the first month. I was then directed to a patient support program through my PH specialist, who were able to cover an additional piece, monthly, of what I was having to pay out. We did have to pay out of pocket and it was extremely expensive. It also put the worry of, "Can I continue to do that?" That went on for close to three years. Then I actually also got the support of the pharmacy department because I guess they also take a piece of the pie, I'll say, they mark it up a little bit. He said, "You're paying so much for this medication already." He goes, "I won't charge you anything for it. I just can't in good conscience do that." So for his pharmacy, he just charged me what it cost me, which was really helpful, but it took about three years. Then after that, the patient support program kicked in even more. I believe it had something to do with the pharmaceutical company, but I don't know honestly how it all works in the background, but it was definitely a big struggle at the beginning. I made a conscious decision to say, "I'm going to be normal. My life for me is normal. I'm not going to change anything." I did end up on a dual therapy. They added a second drug and it has definitely helped my breathing some, opened my arteries more. What I have found is I run out of steam. I only have so much energy come 3:00, 4:00 this afternoon, I'll be done. I kind of hit my daily wall. I find when I'm out with people having to keep a conscious awareness of what's going on, I have a tremendous amount of brain fog, which is very tiring now. It's been said, "Because you have lower oxygen. (my O2 saturations are low), so everything is trouble getting the right kind of oxygen that it needs.” I'm not low enough, consistently, that I need to be on O2, which I'm very thankful for, but it has definitely affected me with my brain fog, my tiredness, stairs, walking, just trying to be myself, be normal with people and with family. It definitely runs me out of steam real fast every day. I do find it frustrating. I have days where I don't do things and I have days where I'm able to accomplish things. So it's kind of how my daily life runs. For me, a lot of it was connecting too, with the Facebook group, with other people who struggle with the different types of PH that's out there. Many of them I find are very, very positive. That's kind of why I too wanted to adopt that attitude, because things can take you down if you let it overwhelm you. So I take things day-by-day. I do tasks one at a time. If things don't work well, one day I just approach it as a fresh approach the next day and I just keep moving on from there. I was originally told one to two, three years at the outside and we're talking now over 10 years, I'm still here. I'm still pretty much functioning on my own. Granted, I have help from family and I do take advantage of that and I have good friend support and I have good support from the PH community. That's what all just keeps me really positive. I have wonderful specialists who answer all my questions, are there. They always say, "Email phone, whatever you need. We're available." That also makes me feel a lot more peaceful. Looking at where I have been and where I am today, the best advice that I could give is honestly, stay strong, stay focused, do your best every day. If one day doesn't work perfect, start over the next day don't beat yourself up about it. Just take care of your health, mentally and physically as best you can. I went from putting all my stuff in order to being here still. I put that down to a lot of I've been very careful. I'm fluid limited, sodium restricted. So my diet has to be very careful. I've got a fine line between getting dehydrated or over hydrated, just due to your heart and lungs overworking. Also just staying positive. It's done I think, great things to keep me where I am today. I'm Stacey Physick and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Never miss an episode with the  Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure:  #phaware #ClinicalTrials