TOO OFTEN MISUNDERSTOOD, MISDIAGNOSED, OR JUST MISSED
While I thought I had posted my last blog here back in November of last year, I was wrong. It turns out my health journey is far from over. While I am still technically cancer free at this point, the effects of cancer treatment have only just begun.
Unfortunately, late last week I suffered a massive heart attack and on Friday, March 10, I underwent life-saving emergency heart surgery to implant two stents. I am home recovering now, and while I am making slow but steady progress, it is going to be long road to a full recovery. This is no ordinary heart attack story. There is an important lesson I must share with the world, please read on. It is a long – but important read.
While in the recovery room after surgery I was informed by my cardiac surgeon that I had suffered a massive heart attack, that I had a 99% blockage in my main artery. Appropriately called the “widow maker”, only 12% of people survive this type of heart attack, and for women under 50 the survival rate is even lower. He had successfully implanted 2 stents in my heart, removing the blockage and achieving 100% blood flow again. He gave me these two images. A before and an after of my heat.
I had been having this massive heart attack for 9 weeks – since being struck with the initial symptoms of debilitating chest pain back on January 7. It is amazing that I had not only survived this heart attack, but that I had remained somewhat functional and upright during this time. A walking miracle?
In absolute shock, my brain began to recount the last 9 weeks in utter disbelief that not one of the previous doctors I sought care form had recognized I was having a heart attack.
A massive heart attack for 9 weeks? How could this possibly be?
During those 9 weeks I took myself to Urgent Care and the Emergency Room multiple times for the debilitating and persistent chest pain I was experiencing. I also had many other regular medical appointments during this time, at every one of which I complained about my persistent symptoms and pleaded for help. During these nine weeks, 19 different medical care providers dismissed or misdiagnosed me, sending me off with pain killers, antibiotics, steroids, or an ice pack. I was given many EKGs, X-rays, blood tests, and repeatedly assured my heart was fine and told to go home and come back if the symptoms did not improve with time or if they worsened.
Having tried each treatment offered, the symptoms did not improve. Thankfully, I kept going back, convinced it was my heart and begging for someone to take me seriously.
It was well documented that I had an underlying heart condition. It was well documented that I had received significant radiation on my left chest that included parts of my heart known to cause future artery scaring and significantly increase my risk of heart attack. It was well documented that I was an oncology patient taking anti-hormone medications that also significantly increase my risk for heart attack. Yet still, looking at an apparently healthy 47-year-old woman – despite my repeated cautions of my complex medical history and the above-mentioned risk factors – this was not on their radar, did not fit within their standard protocols, or was not taken seriously.
Even after life-saving surgery, upon discharge on March 11, I asked the cardiologist going over aftercare instructions with me if my oncologist had been consulted about the litany of new medications I was being prescribed and any potential interactions ruled out. I was shocked at her response: “You are an oncology patient?”.
This is where the real story begins. My story turns into a precautionary tale for all women.
I have since come to learn that among adults 55 and younger, women are far more likely than men to experience lesser-known acute heart attack symptoms in addition to chest pain. And more than half of the doctors seeing women who seek care for those symptoms prior to being hospitalized, might not even realize that the symptoms are heart related. Misinterpreting such heart attack symptoms puts young women at a greater risk of death than similarly aged men. I had no idea.
I was surprised to find that that while the heart attack rate has decreased among older adults, it’s risen among those ages 35-54, especially women. Although many people think heart attacks happen mostly to men, heart disease is the leading cause of death for both men and women. It’s important for women of every age to recognize heart attack signs and seek immediate medical attention.
For the vast majority of people — men and women — chest pain or discomfort is the primary symptom of a heart attack. However, I was surprised to learn that women are more likely than men are to have less recognizable heart attack symptoms, such as:
- Pain or discomfort in different parts of the upper body (back, neck, jaw, arms or stomach)
- Shortness of breath
- Cold sweats
- Nausea and vomiting
I had been having and reporting all of these symptoms – with the exception of shortness of breath – consistently over the prior 9 weeks.
My mind was boggled. Again, I asked, how was this missed?
It was a complicated series of unfortunate of events…
On January 2 I became sick with COVID like symptoms. On January 3, I received a positive PCR Covid test. By January 4 I was started on paxlovid to treat the COVID.
On January 7 I started having incredible intense debilitating chest pain with any activity. I couldn’t walk from bedroom to bathroom without this pain stopping me in my tracks. I couldn’t get dressed, go up or down stairs, I couldn’t do anything without triggering this intense pain in my chest. I started calling the advice nurse on this day. I was told it was likely COVID symptoms and to hang tight and allow paxlovid to do its job.
On January 12 I went to ER for these persistent chest pain symptoms and rebound COVID symptoms. I was given an EKG, blood tests and a chest X-ray and told my heart was fine and that likely had post COVID residual pain and inflammation in my chest. I was prescribed oxy pain killers and topical lidocaine ointment for the chest pain. I tried the pain pills and topical lidocaine for a couple days with no symptom relief. I do not like taking opiates for many reasons, so I stopped those and went back to the ER on January 16.
This time was given another EKG, more blood tests, and another chest X-ray. This time I was told I had pleurisy and costochondritis and was put on a round of steroids, and even given a steroid inhaler, though I kept reporting that I had no pain with deep breaths of shortness of breath.
On February 1 I returned to the ER, again complaining of the severe chest pain and continued inability to do anything that raised by heart rate without the debilitating pain. I was given another EKG, chest x-ray and blood tests, and again told my heart was fine and offered more pain killers, which I declined stating I did not want to mask the pain with opiates, I wanted to find out why I has having so much pain and not able to resume a basic daily routine after a month of treatments and doctor visits. And yet again, I was dismissed and told to be patient, that it could take up to 12 weeks for the “pleurisy and costochondritis” symptoms to resolve. To go home and rest and come back if the symptoms did not eventually improve or if they worsened.
Throughout February I kept calling and emailing my doctors, and relentlessly, I kept going back the ER with the exact same results. “Your heart is fine. Go Home, Be patient.”
On March 2, my primary care doctor – a woman – finally heard me. She immediately recognized that my symptoms of debilitating chest pain with any physical exertion did not align with the many inaccurate diagnoses I had been given and treated for. The diagnosis most of the previous doctors had settled on were COVID induced pleurisy and costochondritis, both conditions that if I had in fact had I would have had marked pain with deep breathes and a shortness of breath. Neither of which I was experiencing. Intense chest pain had always been my chief complaint. But over the 9 weeks I was also experiencing neck, shoulder and arm pain, severe fatigue, headaches, dizziness and nausea. All of which had been reported at each and every visit.
On March 9 I had a contrast echocardiogram and stress test at 8am. By 1 pm that day my Doctor called to tell me the results were extremely abnormal, and I would need an angiogram immediately. I was told that I should also prepare for at least an overnight at the hospital as heart surgery would be possible, if not likely. I would not be able to eat or drink anything after midnight. And, if my symptoms worsened, I was to go immediately to the ER.
Not understanding yet how serious the problem was, I decided to stay home to be with my family, enjoy a nice meal and prepare for a possible stay away from home the next night. I wanted to make sure I was there to get the girls ready for school and do their hair as I cherish this morning time with them. They scheduled me for a 7am ER visit to get the angiogram. As I spent a lovely evening at home with my family, I was concerned, but hopeful they would find that no surgery would be required.
On March 10, I woke the girls up early so I could dress them and do their hair for school. Then I drove myself the ER for my 7am check-in to be prepped for the angiogram. By 3pm I was headed into surgery with no idea what would be discovered. By 7pm I was out of surgery and talking to my surgeon while seeing the above images of my heart.
It was all so fast and surreal.
It took a while to get over the shock and really let the reality of my new post-heart attack life sink in. It is still a work in progress. I suspect it will be for some time to come. I will share my progress with you in future blog posts. For now, I am focusing on healing and spending time with my precious family.
I’m addition to the obvious precautionary tale of women’s unique heart attack symptoms, there are other important lessons here.
Different causes of heart failure require different tests to diagnose. I have since learned that radiation induced heart artery and muscle scarring appears quite differently on EKGs and other tests than traditional blockages caused by a buildup of plaque inside the arteries. Because the pressure on the arteries is applied externally from thickening of heart tissue and muscles post radiation instead of internal pressure from plaque obstruction, it wouldn’t have appeared on any of those many EKGs I was given. While this certainly does not excuse the dismal care I received for 9 weeks, it does partially help explain how this happened.
Complex medical conditions create complex care requirements. The complications caused by cancer treatment are not to be underestimated. While I knew there would potentially be complications – to my heart in particular – and increased risks, I really did not understand the severity of these potential issues or how quickly they can present post cancer treatment. With none of my specialty care doctors communicating with each other, it has been imperative that I serve as my own health care advocate, often having to repeat very important details I had assumed were known within the large medical system my care is coordinated under. The reality is that most specialty care happens in isolation from other specialty care areas, and even more notably, separate from general practice care, regardless of the seemingly high-tech integration of digital patient charts across large medical care systems.
We are in the midst of a serious healthcare crisis. Our medical system is not just overtaxed, it’s broken on many levels. The fallout of the COVID pandemic has left our medical facilities significantly understaffed and providers severely overworked. Many have left the profession or are taking extended leaves of absence for their own survival. The result is patients having to use urgent care and emergency room visits in place of specialty care because the wait time to see any specialists – including cardiac specialists – can be weeks or even months out. This only leads to more chances of misdiagnosis or completely missing serious medical conditions that require immediate attention. This is especially true for women. This is certainly my lived experience.
Women are strong. Sometime too strong. We tend to care for others above all, including ourselves. We tend to minimize our pain and suffering and often wait too long to get essential medical care, fearing we will be perceived as weak or complaining – and are often dismissed as such when we do report concerning symptoms.
Meditation and breath work saved my life. An avid student of meditation, I practice mindfulness mediation and breath work many times a day, every day. This was undoubtedly the key to my survival for those long 9 weeks. I truly believe it is only because of my well-honed ability to significantly lower my heart rate and blood pressure through deep breathing and meditation, that I am living today. I encourage everyone to start an intentional practice of mindfulness mediation today. Even 5 minutes a day can have dramatic impacts on your health and well-being.
Knowledge is power. It is my hope that in sharing my story, lives can be saved. Please share this blog with all of the women in your life. This is sadly uncommon knowledge – and they deserve to know the facts. Thank you.
Another important takeaway for me is Gratitude. I’m filled with gratitude for my life. For my own tenacity in repeatedly seeking care and not giving up. For more time with my loved ones. For the support of my incredible husband, family, friends and colleagues who continue to show up time and time again through these difficult 2 and a half years since receiving my initial cancer diagnosis in October of 2020. For my ability to share my story with you today.
And, as always, thank you for reading and for being by my side through every step of this continuing journey.
Clearly my work here isn’t done! 🙏🏼❤️🩹
(Ans yes, I have shared this story with my medical provider patient experience team and with your help, plan to share it with as many people as I can.)