Tuesday, April 12, 2022

My Frightening Journey with Cardiac Sarcoidosis

All alone in the room, I have experienced no greater terror than watching a screen read out my feeble heartbeat

By David Kenis, Representative

September 12, 2021, seemed like any other Sunday. I was getting ready to watch NFL Football for the afternoon, and my wife, Allison, had plans to go visit her mother and take her out for lunch.

I said goodbye to Allison and walked from the kitchen to the dining room. All of the sudden, I felt strange, everything started spinning, and I collapsed on the floor.

I was only out for a few seconds, but I knew something wasn’t right. Allison was still in the driveway just pulling out, and I ran outside and told her to get me to the hospital right away.

On the 10-minute ride to the emergency room, I could feel my heart doing flip-flops in my chest. I wasn’t in pain but was short of breath and incredibly anxious.

When I got to the ER, my heart rate was between 180-200 beats per minute. They put me through triage, and I was told to wait (as you usually do in a hospital). While I was waiting, I had another episode and passed out. This ramped things up in the ER, and I got moved to the front of the line.

An technician came by and gave an electrocardiogram. I was still in the waiting room at this point, but because I didn’t have any chest pain, I don’t think they thought my problem was as serious as it turned out to be.

I watched the face of the young technician as she was administering the test and I could see her eyes widen. I heard the word tachycardia, and that’s when things really started moving.

It was like having a VIP pass to an event I didn’t want to attend. If left untreated, sudden cardiac death would have certainly been my near-term fate with lethal arrhythmia striking me at any time.

I was put on a stretcher and immediately rushed into the treatment rooms. They hooked me up to a cardiac monitor and attached defibrillator pads connected to some highly amped shock boxes and gave me an IV.

I spent the night in the ER and was transferred to the cardiac ward early the next morning. For some reason, I don’t remember most of my time in the ER or that first day in the hospital.

On day two, my heart still pounding, I was having trouble breathing, and I thought it was going to stop at any moment. I was left in the cardiac ward by myself interrupted occasionally with vital sign checks and blood tests but otherwise left to my own thoughts with restricted visiting hours during the pandemic.

At that moment, without a firm diagnosis, I was left fearful of dying. I was not in pain and otherwise had all my wits about me, which meant there was nothing distracting me from an overwhelming sense of being cornered.

All alone in the room, I have experienced no greater terror than watching a screen read out my feeble heartbeat.

I was then transferred to the intensive care unit where I spent the next six days. Being a 60-year-old man, the doctors presumed I had suffered a heart attack.

They sent me to a different hospital for an angiogram and insertion of stents in my arteries. However, the angiogram showed my arteries were relatively clear and I did not require stents.

I did not have a heart attack.

That was both good news and bad news. If not a heart attack, what was it?

After a myriad of tests at various surrounding hospitals including echocardiograms, CT Scans, MRIs, and blood tests, it was determined that I had an electrical problem with my heart. I was assigned to a cardiac electrophysiologist, a cardiologist who specializes in electrical heart issues.

Because of the MRI results, the cardiologist suspected I had a rare condition called cardiac sarcoidosis, but this needed to be confirmed with a positron emission tomography test or PET scan. After the scan, my diagnosis was confirmed.

I was then sent back to Royal Columbian Hospital to have an implanted cardiac defibrillator or ICD/pacemaker placed in my chest. Without this device, there was little doubt that I would remain at high risk for sudden cardiac death. I was also given a list of 19 different medications, which I will likely have to take for the rest of my life.

One medication in particular seems to have stopped the tremors in my heart, with the side effect of slowing my heart rate down to about 40-45 beats per minute. My pacemaker helps keep my rate at about 60 BPM.

On October 20, 2021, after 38 days since the incident, including 6 days in ICU, I was released from hospital. The day after Allison’s birthday.

Although the pacemaker/defibrillator assures my heart beats at a certain rate, my mind had to learn how to pace itself. In the immediate weeks that followed, I had to come to grips with my anxieties and fears.

I was also forced to slow down because I was given a six-month driving restriction/ban.

As the weeks and months have passed, I have tried to adapt to my new life and not worry about a sudden cardiac calamity. I have stopped Googling survival rates for patients with cardiac sarcoidosis.

I have had prompt and excellent medical care, and I have every reason to be optimistic. If things take a turn for the worse, I trust my cardiologist will figure out the next steps for management.

My experience has given me insights into being a patient with an unusual diagnosis and how doctors, nurses, and friends and family should be sensitive to a patient’s fears.

What Is Cardiac Sarcoidosis?

The University of Ottawa Heart Institute defines cardiac sarcoidosis as “a rare condition which affects a small number of people who suffer from a condition called sarcoidosis—an inflammatory condition that can affect multiple organs. Cardiac sarcoidosis is a rare disease in which clusters of white blood cells, called granulomas, form in the tissue of the heart. Any part of the heart can be affected, though these cell clusters most often form in the heart muscle where they can interfere with the heart’s electrical system (conduction defects) and cause irregular heartbeats (arrhythmias). Cardiac sarcoidosis can also result in heart failure.”

My Frightening Journey with Cardiac Sarcoidosis

What Is Cardiac Sarcoidosis?

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