I was diagnosed with pulmonary arterial hypertension (PAH) on Dec. 18, 2019, which came about by a congenital heart defect, Scimitar Syndrome.
My health issues started in 2013. I started feeling short of breath when I was on the treadmill at the gym. I always worked out—running, biking, weightlifting. At the time, I was working in the medical field and I told the doctor I was worried about being short of breath. He recommended I use an inhaler before I worked out. I did, but it didn’t make a difference.
I changed jobs and started to work for a cardiologist. As patients described their symptoms, I thought, “Wow, they sound like me and how I’ve been feeling.” I didn’t want to feel like a hypochondriac, but I became concerned so I discussed it with the cardiologist.
He ran an electrocardiogram (EKG) test in the office and set me up for an echocardiogram. He told me my tests where normal, but I knew there was something wrong. I started to have severe swelling, and feeling short of breath became more frequent as I walked from the parking lot to the office. I could no longer climb stairs, and that’s when I knew there was something wrong with my heart.
I asked another cardiologist to do a cardiac MRI after his echo, and EKG also showed nothing wrong. The MRI revealed Scimitar Syndrome. This rare condition presented its own challenges. It was difficult finding a cardiologist who knew about it and a surgeon who could repair it, and I needed to find both within my insurance guidelines. I finally found a cardiologist and a surgeon willing to perform the surgery, but it was especially challenging because Scimitar Syndrome is typically diagnosed in children.
My first open-heart surgery was Nov. 10, 2015. I told my surgeon, cardiologist and pulmonologist that I was still symptomatic three months after surgery, but they all told me it takes time to heal. I was on oxygen by the sixth month. Thankfully, in January 2016 my husband’s insurance changed, and I could go to the Mayo Clinic Hospital in Phoenix, where I live.
In June, immediately following my daughter’s high school graduation, I went to the emergency room thinking I was going to die. I was admitted to the hospital in heart failure and stayed seven days. During that time, doctors ran a test that showed the baffle placed in my heart had become detached. I needed a second open-heart surgery to repair the baffle.
On Aug. 11, 2016, I had surgery. For six months, things were good, not 100 percent, but good. Then I began to feel short of breath again. Tests revealed stenosis in the baffle. Doctors tried to repair the baffle without having a third surgery but nothing worked. On Dec. 9, 2017, I flew to Mayo Clinic in Rochester, Minnesota, for my third and hopefully final open-heart surgery. One year passed, and although I struggled, things seemed better.
In 2019, I began to feel chest pressure and short of breath during exertion, and of course I’m thinking stenosis. My cardiologist ran tests: EKG, echo, chest X-ray, cardiac MRI. The results showed slight changes but nothing concerning. I started to think it was all in my head, that I was having panic attacks, and I was still recovering from my surgeries. However, my shortness of breath, chest pressure and now swelling was getting worse. I decided to make an appointment with my cardiologist. He ordered a bilateral heart catheter to check for stenosis and pulmonary hypertension (PH).
On Nov. 22, 2019, the heart catheter confirmed that I had PAH. I was so numb and confused when I was told. How could I have gone through three open-heart surgeries, numerous procedures and not be fixed? I had an appointment with a PAH and heart failure physician at the Mayo Clinic. I was happy that Mayo had a PH specialist, so I didn’t have to leave their care.
On Dec. 18, 2019, it all became real that I have another rare health issue. Upon speaking to my PH physician, I started to understand PH, but I am still full of emotions.
This year, 2020, has brought me new challenges, but it has also brought me new hope. I feel connected to patients like me, patients I can finally relate to. I have access to information through Pulmonary Hypertension Association, and for that I’m grateful. With my Scimitar Syndrome, I didn’t have access to other patients or information.
I will tackle this new diagnosis like I did with my heart surgeries, with faith, family, determination and a whole lot of tears, laughs and cursing.