My Journey
Survivor of multiple asthma attacks, cancer, and
autoimmune-induced heart failure & stroke
(the abridged version, I know you don’t have all day)
At 6 years old, it started. I had my first asthma attack that went from normal to blue in a few minutes. From there, through 12 years old, there were 6 helicopter life-flights, one leer jet ride, and several ear and sinus surgeries.
Things calmed down after that to a manageable pace until I turned 30.
In October of 2013, I started experiencing strange symptoms that, at first, appeared to be completely random: fatigue, chest and shoulder pain and then I started seeing spots. I spent a month going back and forth between the pcp and the emergency room (twice) where I was diagnosed with (1) muscle pain and (2) acid reflux. I worked out 5 days/week and knew that wasn’t right, so I kept returning to my general practitioner. After traveling for Thanksgiving with my partners family in which my symptoms worsened and expanded to include splinters and extreme abdominal swelling despite not eating much, I returned to a cat-scan of my chest. At that point, it was clear that my heart was enlarged.
But why?
The next morning, I had an appointment with a cardiologist who promptly admitted me to the hospital. After a week-long admittance that included a barrage of tests and a revolving door of doctors (like an episode of House), I was diagnosed with congestive heart failure, and a stroke.
Fast forward three months, I flew to Cleveland, Ohio seeing the most prominent doctor on Vasculitis in the US. He finally diagnosed me with a very rare autoimmune disease called “Eosinophilic Granulomatosis with Polyangiitis” or EGPA to avoid the mouthful. Only 2 to 5 new cases a year per 1 million people are diagnosed.
It took many months (years) and countless doctor appointments after that; but with treatment of a chemo drug and extremely high doses of steroids, I was finally stabilized. I still felt terrible most of the time, but I was grateful to be alive.
No one could tell me what caused it, or what my life might look like going forward. I was withered away, having lost about 10 lbs (when I was only 95 lbs and 4’9” to begin with). I thought I was nearing the end, but I refused to give up or change my normal routine. I continued going to the gym every morning, even if a 10 minute treadmill walk was all I could handle.
A year later, after annual echocardiogram, my cardiologist realized that the damage done by the EGPA and all the tests that had been done to determine what was happening had also damaged my heart valves to a point of having heart valve prolapse (my heart valves were leaking). Basically, at 33 years old, I needed open heart surgery.
January 21, 2016 was the day that stubbornheart was truly born. I amazingly survived a full open heart valve repair of both my mitral and tricuspid heart valves; but the true test was the next 6 weeks of FMLA time off and ‘taking it easy.’
I started meditating, and between that, my phenomenal cardiac rehab staff, and an outpouring of love and support from friends and family, I made it through my medical leave and returned to work 6 weeks later.
Years later, I was still on the chemo medicine (it was the only drug they had to treat it since it was so rare) and had to have blood-work quarterly, regularly fighting the urge to freak out over whether every strange sensation in my body meant that I was going to die.
After visiting a holistic doctor, I learned that the years of steroids, antibiotics and terrible diet I sustained as a kid had completely destroyed my gut microbiome. With her instruction, I embarked on a three month long candida diet, which basically consists of eating only certain vegetables and some protein, alongside herbs and vitamins (no sugar, fruit, coffee, dairy, nuts, gluten, etc). It sucked, but my gut biome was restored. I ate a hell of a lot of avocados in that 3 months, but I have to say, I had never been healthier and my immune system was the strongest it had ever been.
I continued meditating and worked out most days and became stronger (both physically and mentally) than I’ve ever been. It was 3 years after that adventure that my autoimmune disease relapsed.
At that point, another medication had been approved for vasculitis, and I worked with my rheumatologist to change to that and continue working to improve my relationship with my body.
We lived a year traveling through the US in 2022, and finally settled in Central Oregon, which was a dream for both of us. At my establish-care pcp visit, my doctor noticed some swelling and inflammation in my neck and asked if that had been bothersome. I’m inflamed all the time, so I hadn’t noticed, and after several weeks of waiting, and several rounds of tests, learned that I had papillary thyroid carcinoma (thyroid cancer). After many months of various tests, a lot of waiting, and a trip to California for a visit at a cancer center of excellence; I learned that I needed to have ANOTHER sternotomy (cutting the chest open) because the cancer had spread to all the lymph nodes in that area.
In December of 2023, I had a surgery that consisted of a total neck dissection and partial sternotomy, meaning that they basically cut my neck from ear to ear and then cut my chest from the top to halfway down and removed (almost) all of the infected lymph nodes.
It required 6 weeks of recovery, fmla, short term disability and a lot of help from friends and family, but my tiny vessel made it through.
Not long after I found out they had missed some and had another, smaller surgery with a robot arm through my left rib cage to remove (almost) the rest of it.
This was a long, confusing journey, but I’ll just say that after these two surgeries, a lot of confusion, and radioactive iodine later…well, I still have cancer. But it is slow growing and has been reduced to a small nodule somewhere in my neck/chest. Tina Tumor and I are currently co-existing and keeping quarterly tabs on each other.
These were the two 'big' medical journeys. I also had multiple sinus and ear surgeries throughout my life (now known to be part of my egpa) rendering me partially deaf in both ears. To add to the fun, I endure allergies, inflammation, pain in my stroke hip, and stomach issues on a daily basis.
All this to say, I have been where you are. It's not easy, but it is possible to still lead a full and fulfilling life and I can help you get there.
Health is journey that requires constant effort. I push myself to learn something new every single day, which is the point of this site: to spread my stubbornheart ways and try to inspire people to take control of their own health journey and realize there is no magic pill. For me, that pill often just caused more issues.
The Journey back to yourself.
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