Why me? Fibromuscular Dysplasia

Fibromuscular Dysplasia
But one day, the thought occurred, “Why not me?” There was a lesson here. For some reason I was spared from death and am here on earth for a reason.
13 Comments / 53 Shares


Driving home from work one Thursday in June I knew my life would never be the same. The sense of doom and fear was overwhelming. It was June 25, 2009. The car radio was abuzz with news about Michael Jackson. Reports said he suffered cardiac arrest in his home and was in a coma. The other headline news was that Farrah Fawcett died, after a battle with cancer.

By the time I got home, whirling with worry and dread, it was announced that Michael Jackson died. How could this happen? Two of my icons from the 80's dead in one day? I prayed for Michael's children and family, and prayed for Farrah's family. I prayed for my family and asked God, "Why, why, why?"

The bad news I had received on this day was from a cardiologist at Mayo Clinic whom I had seen a few days prior. It's never good to receive a call from the doctor soon after the visit... much better to receive a call from a nurse to be told the tests turned out okay. But on this day the call came to deliver the news that I have a disease called fibromuscular dysplasia (FMD). It was probably what caused the heart attack I had out-of-nowhere just a few months earlier. I was 38 years old.

Although I hadn't died that day like Farrah and Michael, I felt nothing but a deep, dark pit of despair. June 25th was the first night I remember being afraid to go to sleep, for fear I wouldn't wake up.

Three months earlier my mysterious heart attack happened while on vacation, on a ski trip to Utah. My family and I stopped at a truck stop for lunch due to blizzard conditions on the highway. While waiting in the truck stop restaurant I suddenly felt extremely annoyed, hot and sweaty, and was overwhelmed with wanting to get out of there. My chest began to feel as if sandbags were inside pushing against me, trying to crush me. After a few moments I realized the left side of my neck hurt and jaw ached. It was at this point I remembered these are symptoms of a woman’s heart attack… I think… but that can’t be right… so I said to my family, “Something is wrong with me... my heart is pounding, I have this pressure in my chest.”

My husband hopped up to find out if there was an Urgent Care in the area, and off we went; I walked and panted my way to the vehicle and we made our way to the Emergency Room of the hospital in town. I am pretty sure we all thought I was having a panic attack because something truly wrong with my heart seemed like an absolute impossibility.

Eventually we learned that one of the arteries in my heart dissected, or tore, and four stents were placed by the specialist in order to repair the artery. There was no explanation for this heart attack. I didn't have clogged arteries or high cholesterol, or other typical risk factors. I was too young to be considered a cardiac patient. When I went home and found a cardiologist to visit, the cause of my heart attack was determined to be Sudden Coronary Artery Dissection, or SCAD. The doctor assured me this was terribly rare and wouldn't happen again, so I should go on with my life, dutifully take the six newly prescribed medications, eat a heart healthy diet, and try not worry.

So I did. I got back to life, returning to work in a week, getting groceries, cleaning the house and as much "normal" activity as possible. Yet inside I was a wreck, worried about the lack of explanation, fearful of another heart attack, angry that it happened to me, and frustrated with the new efforts to eat healthy and get used to medication side effects. There were many tearful moments, many cries out to God, but very little communication with anyone about everything I was feeling.

Even with the difficulties and doubt I clung to my cardiologist's words when he said, "...but it won't happen again." These words needed to be true.

And yet, one month after my heart attack, I awoke early to the same chest pressure, jaw pain and sweating that occurred on that first day. A few moments of walking around the house, sitting down, wondering if it felt the same, telling myself it was different, culminated in a call to my husband. He was already at work for the day and I explained what was happening, asking, "Do you think I should go to the hospital?"

So off I went and this turned out to be a second SCAD, requiring a fifth stent.

Now that this incredibly rare thing happened twice I sought a second opinion and went to Mayo Clinic. I went to Mayo expecting to learn that something was wrong with my heart. But after testing the phone call came to deliver the news that the underlying problem, probably causing the SCADs, was fibromuscular dysplasia. As it was explained to me, this is a disorder of the arteries causing them to be bumpy like beads on the inside rather than smooth like a straw. There is no treatment and is no cure; the progression of the disease is unknown. The doctor said my particular case of FMD is fairly severe, with tears in several arteries, the risk of which is stroke, malfunctioning kidneys and other problems.

So on June 25th, going to bed afraid to sleep, I began to think about what the rest of my life may look like. There was nothing in the images... I could not imagine what it may look like or how long it may last. Despair and the sense of isolation were overwhelming.

Life has a way of going on though. One foot in front of the other, one day after the last, time goes by. I had asked God, “why me?” so many times as I grasped the fact that I was just 38, survivor of a heart attack with several stents holding my artery together, with a chronic little-known-about disease.

But one day, the thought occurred, “Why not me?” There was a lesson here. For some reason I was spared from death and am here on earth for a reason. I began to think about thankfulness and privilege; the colors of trees, flowers and sunsets literally seemed brighter. I noticed for the first time how much joy could be found in time with family and friends. When I stopped, thought about the moment and was present within it, there was so much joy to be experienced.

I began to notice the strength in my legs from walking every day. Muscles were becoming long and lean; although I started with 40 minute walks on the treadmill indoors after my heart attack, after several months I dared to venture outside for a walk with my husband. At first I brought nitroglycerine, wore a heart monitor and insisted we have a phone.  Eventually I went out alone, without nitro but always with a heart monitor and phone, then finally with just the phone. I noticed the progression of trust in my body. Although there was daily fear of another heart attack or trip to the hospital, I was experiencing the daily blessings of life.

I wonder if there are people who appreciate their gifts without going through a crisis. Although I thought I was happy and thought I was doing the things expected of a mid-30’s married professional living in the suburbs, I know now my life was full of lists, rules, plans and duties but didn’t include much joy or appreciation. The fact is that there is always a risk of another heart attack or a stroke, and although these facts bring fear, I am compelled to live daily with purpose and intention. Nothing can be taken for granted. It is the simple fact of knowing life can be taken away by my faulty body at any moment that necessitates me living to the fullest.

I seek joy, comfort, fun, lightheartedness, forgiveness and presence. I am involved with organizations that support women’s heart health and with FMD support groups; I try to give back to those the very communities that I eventually found and which embraced me. It took several months but I found groups of women who have been though very similar experiences to mine; there is comfort in familiarity although each of us is uniquely different. I don’t know what the future holds but am determined to take care of myself and enjoy the ride as much as possible.  Where the ride goes, we shall see.

More than three years have passed since that fateful day in June of 2009 when I felt as if my life was ending. Michael Jackson and Farrah Fawcett’s lives ended that day. But mine was just beginning.

Comment on this story using Facebook.