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I'm Aware That I'm Rare: the phaware® podcast

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Angela Michelle - phaware® interview 207

Nov 16, 2018

Angela Michelle is a professional photographer and yoga instructor living in San Antonio, Texas. She was diagnosed with CTEPH in January 2018 after years of experiencing symptoms. Angela underwent PTE surgery in August of 2018 at UCSD.

My name is Angela Michelle. I am from San Antonio, Texas, and I was diagnosed with CTEPH, which is a form of pulmonary hypertension.

How I was diagnosed is actually quite a story. I began getting short of breath probably about 2013, and I kept bringing it up to my doctors. I was told it was allergies, it was asthma, respiratory infections, it was just that I was overweight. I would take whatever meds they gave me. I'd use inhalers. Nothing worked. I would try to work out. I was developing an intolerance to exercise, and so this continued on for quite a few years.

Then in 2016, I actually had a stroke. At that time, they realized I had multiple pulmonary embolisms, as well as my carotids were blocked. They decided to try to figure out what would make a then 38-year-old woman just throw all these clots, so it was determined I have antiphospholipid syndrome, and that was the first I'd ever heard of this particular disease. That was 2016, and I was short of breath at the time, and they told me, oh, it'll get better. They'll dissolve on their own, and so I left the hospital, continued on with my life. I was really lucky in that my stroke didn't leave me with a whole lot of physical limitations. It did leave me completely blind in one eye, but I found I was able to adapt to that.

So as I continued on, I just kept getting more and more short of breath. I am a yoga instructor, and so I would notice that even during yoga class, I was way out of breath more so than usual. I again brought it up to my doctors and they decided to send me to a pulmonologist, but it was going to be a long wait, and in the meantime, I ended up developing a cyst that needed to be removed, and it was totally unrelated to anything, but because of me being on blood thinners, it did require a hospitalization.

While I was there, and I was going to get put under to remove the cyst, they realized that my O2s were really low, and it was so low that they decided not to put me completely under, so I had to have the operation awake. Then at that time, they decided to send me home on oxygen, and when I kept trying to figure out like, well, why is this happening and what it is, they didn't seem to know, and they're like, "you'll just have to wait to see the pulmonologist." This happened a little over a year after my stroke, so this was July of 2017.

While I was in the hospital, I was very active on social media, Facebook and Instagram, and I shared a lot of my story, especially my health condition because I actually had two hospitals misdiagnose my stroke, and it was a third hospital that caught it. so I feel like there's a lot of misconceptions about that as well. So I am very active in telling my story. At that time, I was writing on Facebook and I was sharing that I was in the hospital and my low O2s, and it turns out an old friend of mine who I actually knew from middle school and high school had become a heart surgeon, and he was actually working out in L.A. He privately messaged me and suggested that they look into pulmonary hypertension, particularly CTEPH. He explained that it was really rare, but that I kind of fit the bill for it considering my antiphospholipid blood clotting disorder, that I was out of breath with no known cause, and so I was the one to originally bring it up to my doctors here in San Antonio.

At this time, I was already on oxygen 24/7, and the disease had progressed to a point that I couldn't even walk across the room without getting really short of breath, feeling like I was going to pass out and my heart rate skyrocketing. When I brought it up to my doctors locally, they were hesitant because they were like, "well, it's really rare", and they're like, "well, maybe, but let's run tests." I went through the whole battery of tests, and it wasn't until I had my right heart catheterization in January of 2018, and at the time the cardiologist that performed it, she said I didn't have pulmonary hypertension. So I was kind of like, well, that's good, but now we're back at square one.

Well, then my follow-up appointment of the pulmonologist, he was like, "no, you do have it, and I'm sending you to a PH specialist." So I ended up at a PH specialist here in San Antonio, and as soon as I met with him, he asked me what I knew about the disease, and at this point because my friend had told me about it, I had months of looking it up online and learning about it, so I told him what I knew, and he said I was pretty well informed and that he was sending me as a recommendation to have PTE surgery in San Diego.

I did have PTE surgery on August 7, 2018, so I'm about 10, 11 weeks out of surgery. I'm doing much better. I do still use oxygen on exertion. I'm currently in pulmonary rehabilitation, and I wear it when I work out, but I'm not needing it on my day-to-day activities and I have seen a huge difference.

After my stroke was misdiagnosed, I realized I had to take my health into my own hands. Prior to that, I relied on what the doctors said, I felt like they knew best, I didn't have a medical degree, and after two hospitals had misdiagnosed me, I knew something was wrong, but I didn't listen to my gut. I listened to the doctors. After that happened, I realized that it was really important that I be my own health advocate.

When my friend suggested that this was a disease I could have, I decided to go full force and use my energy to understand this disease, to figure out if it's what I had, and to really push my doctors. I really do feel like in a lot of ways I had to advocate for the tests that I needed to have done. I was lucky to have a friend who knew about this disease. He knew what tests I needed to have done to get the diagnosis. He was a text away from answering any of my questions, and he told me what tests to ask for, what questions to ask for, and I was able to send him copies of my test results and he could help me decipher them. I was really lucky to have that, and not everyone has that access to someone who can help guide them.

I just think that there's a lot of misinformation and misconceptions, and I don't think a lot of doctors understand this disease yet. Just like my cardiologist, I don't even know if she knows what it is, because according to her, I didn't have it, and I obviously did and do, so I just think there's a lot of information that is still not being put out and getting to the doctors so that they diagnose people properly.

Life has definitely opened up to me. It's amazing how I feel, I'm not short of breath all the time. I can do things like walk my dog or go to the grocery store and not be tied to an oxygen machine. For the past year and a half I was on oxygen 24/7, so I don't think you realize until you've gone through this, the amount of freedom that you had taken from you and then that you get back after, so I feel very free and very lucky to be on this side. I was really scared of the surgery because I do have a blood clotting disorder and I knew the risks going into that, so just to be on the other side, the anxiety and the I guess frustration of it all has really dissipated.

Advocacy is really important to me right now because it did take so long to get diagnosed, even though it was about I guess two years/a year and a half from thrombosis, at least known thrombosis to the CTEPH. I had been experiencing symptoms five years before that. Because of my missed stroke, I am really big on advocacy and educating the community, knowing the signs of different diseases, understanding our body, listening to our body, and learning how to be our own health advocate.

I would love to help patients learn how to navigate their health and the system, and so I am working on material to actually teach people how to do that, how to take the right notes and where to research and how to research, and how to reach out and how to talk to your doctors. I feel like that's really important, and we need to be responsible for our own health and not just hand it all over to someone who sees us for five/ten minutes every once in a while.

Also understand that for those of us living with these diseases, we live a very different life. A little bit of empathy, compassion can go a long way to help us in our world and navigating what we go through. A little bit of self-love and compassion for ourselves too that this is hard hands that we have been dealt, but that ultimately the choice is ours in how we choose to live our life and how we choose to deal with what we've been dealt. I always say it is what we make it in life, and so I feel like me going through this was part of me experiencing what I had to to lead me to where I'm at, and where I'm at is really wanting to help others now.

My name is Angela Michelle, and I am aware that I am rare.

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*Photo Credit: II Sapphires