Annette Pompa of Pennsylvania lives with a cardiac diagnosis I’d never even heard of until I, too, was diagnosed with it several months after surviving a heart attack. It’s called Coronary Microvascular Disease (MVD) or Small Vessel Disease. Unlike the classic Hollywood Heart Attack I’d initially experienced – which is typically caused by a significantly blocked major coronary artery – those of us diagnosed with MVD or coronary spasm disorders have few if any detectable blockages obstructing flow in the major blood vessels feeding the heart muscle. Yet we can experience the same distressing symptoms of a heart attack. Annette is a former art teacher who was barely 41 years old when MVD “came barging into my life”, as she explains. With her permission, I’m reprinting this transcript of an American Heart Association presentation that Annette gave recently about living with a non-obstructive heart condition.
“This is my story. I represent an often misunderstood population living with a very different type of heart disease. Sadly, there are many more like me with MVD who are simply not being recognized – and indeed even dismissed. Symptoms often persist even without any visible blockage or reason for the angina, shortness of breath and fatigue which often accompany the condition. It is crazy, right? Here I was seemingly healthy – yet ended up battling heart disease.
“What this means is that my tiniest of coronary blood vessels do not work well. And our smallest vessels are amazingly intricate. They feed the very heart muscle itself. The micro vessels make up 75% of the regulation for flow resistance within the heart. With mine being dysfunctional, my heart was starving for nutrients. It was not working well.
“Symptoms often persist even without seeing any blockage or reason for the angina, shortness of breath and fatigue which often accompany heart disease. Patients are then put through checking off the boxes of other possibilities, believing it simply can’t be the heart if there is not a blocked artery.
“I first started on amino acid supplements, hoping to boost my own natural nitric oxide production. But it wasn’t enough. Then I started trying various nitrates and incredibly, I found the level of nitroglycerin I needed. This can vary among Coronary Microvascular patients. I need what’s known as donor nitro – and not just small amounts here or there, but transdermal patches of it in varying amounts to deliver a steady hourly flow to my system which it lacks. For breakthrough angina pain, I also take Nitrostat sublingual tabs taken as needed (tablets that dissolve under the tongue). It is more than an average heart patient takes, but makes a difference in my symptom management. My blood pressure returned to normal and I could begin managing more time out of bed.
“But MVD means I am no longer able to hold a job, and I now focus on my best care and advocating for all people with non-obstructive heart disease issues.
“These small microvessels are affected sporadically all over my heart; physicians do not know why this occurs. That is another reason why it is hard to detect. There is no cure, but there are treatment attempts to manage my symptoms and keep those pesky micro vessels open! It is not considered as benign as it once was, and can cause truly slow and steady damage at the micro level, especially if ignored. It’s a heart condition that needs prompt care and respect to give patients their best quality of life dealing with this chronic condition.
“Here is something interesting: when patients seek help for cardiovascular symptoms, over half of them are found to have non-obstructive heart disease. 60% of women with symptoms of heart disease learn during an angiogram that they do NOT have visible obstructions in their coronary arteries despite their serious cardiac symptoms.
“Coronary Microvascular Disease is difficult to diagnose and treat. There are roughly 90,000 new cases a year.
“Chronic angina significantly impacts quality of life, ability to work, and costs to society .”
“85.6 million in the US are living with heart disease or the after-effects of stroke. That is an incredible number. Now think about it. We often focus on the 80% of that number – heart disease that can often be prevented. We must strive to change all we can. If we can do something to protect our precious engine, then that is what we should do. Be informed and proactive.
“However, being able to avoid this number one killer is not always possible.
“With heart disease rates not decreasing AND more areas misunderstood, we need more research. We need widespread clinical understanding for our local doctors to see that there is a percentage of people often being dismissed and lacking immediate important care.
“Supporting research on MVD could help reverse these sad numbers of people who are attacked by an often unseen killer. It may even help change the way statistics are heading. The numbers are growing in heart failure that’s linked with non-obstructive cardiac conditions. Patients living with heart failure – but with “normal” ejection fraction – are expected to be the overwhelming majority in the future. Why? We are getting rather good at intervening when it is possible. Bravo! Yet we have a long way to go to understanding the often unseen, sneaky non-obstructive issues.
“Here’s how to protect yourself:
- You must trust your body and its symptoms, and respect what it is telling you.
- You must find patient-centered care and be persistent.
- Be your own advocate and learn all you can about living a healthy life to be your best.
- Control what cardiac risk factors you can control.
- Be on the lookout for new developments.
- Advocate and search for better ways to beat heart disease, our #1 killer.
“We can work towards reversing these mortality numbers. We can and must work towards a better heart health future for us all.”
Image: ©Mayo Clinic
© 2016 Annette Pompa
 Excerpt From: Juan Carlos Kaski, Guy D. Eslick and C. Noel Bairey Merz. “Chest Pain with Normal Coronary Arteries.” Springer London, London. 2013
Q: Were you aware of coronary microvascular disease before reading Annette’s story?
Learn more about Coronary Microvascular Disease and other non-obstructive forms of heart conditions:
UPDATE November 2019: Diagnostic tools used to identify coronary microvascular dysfunction
More from the WISE study (Women’s Ischemia Syndrome Evaluation). This research from the National Institutes of Health began in 1996 to increase scientific knowledge about ischemic heart disease in women.
You can watch videos of the 2019 INOCA International “Meeting of the Minds” cardiology conference in London, including Dr. Juan-Carlos Kaski’s presentation on microvascular disease.
Misdiagnosed: Women’s Coronary Microvascular and Spasm Pain (how to diagnose non-obstructive heart disease)
My Love-Hate Relationship with my Little Black Box (how the non-invasive, non-drug therapy called TENS has reduced my use of nitroglycerin for my own MVD symptoms)
Small Vessel or Coronary Microvascular Disease – from Mayo Clinic
A Cardiologist’s Advice on How to Use this “Wonder Drug” (on taking nitroglycerin to relieve angina pain)
Watch this 5-minute video about Joan Jahnke of South Carolina who went to Emory Heart & Vascular Center to have her MVD appropriately diagnosed and treated
“I Rang the Bell Again. No One Came.” An Australian woman’s shocking account of being dismissed by hospital staff even when she carried with her a letter from her cardiologist explaining her twin non-obstructive heart conditions of MVD and Prinzmetal’s Variant Angina.
NOTE FROM CAROLYN: In my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017), I included much more about how women’s heart disease can differ from men’s in research, diagnostic accuracy, treatments and outcomes. You can ask for this book at your local library or favourite independent bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price).