One Last Karma Crusade

Dear Dr. Hope Crusher,

CC: Medical Disciplinary Board

Your misdiagnosis really messed me up. I want you to read this so you don’t do the same thing to someone else.

I was referred to you because I had pain in both of my arms for no obvious reason. My family doctor thought I had arthritis, but you glanced at my file as you walked down the hall toward the examination room and decided that I had Fibromyalgia.

It had been just three months since the pain began. There was no pain in the lower half of my body at that time. You jabbed your fingers into my muscles hard enough to hurt me everywhere, not only on the tender spots, but you ignored the fact it was you who was hurting me, not my illness.

You handed me a few photocopied notes and diagrams about stretching and guided me out the door.

There was never any follow up. You didn’t recommend more tests – not even a sleep study – or more doctors. You only saw me once. My family doctor had to prescribe me pills and check in with me and help me manage my day-to-day pain and fatigue.

Because you had incorrectly labelled me with Fibromyalgia, other doctors either thought I was a hypochondriac or a lost cause, and I went for years without finding out what was really wrong with me.

After years of no sleep, even while taking the sleeping pills recommended for patients with Fibromyalgia, I got fed up and demanded a sleep study. Luck for me, I had the energy that day to advocate for health.

The sleep study uncovered a major issue with my heart. I know you’re not a cardiologist, but you’re probably smart enough to realise that cardiomyopathy causes fatigue.

Turns out all I needed were beta blockers and ACE inhibitors to make me feel better. I’m not exhausted or achey or stiff anymore, Dr. H.C. I have been living well without medication for a very long time now, Dr. H.C.

If you had taken the time to diagnose me properly, instead of trying to stuff me into a neat box and then throw me out the door, you would have saved me a lot of heartache.

If you practice medicine every day the way you practiced medicine with me that day, you are a disgrace. You should put your medical licence in that box, set it on fire and then go back to school to become a Wall Street broker.

I’d rather you fuck with my money than my life.

With all my heart,

Jenn

Premature Ventricular Contractions

It’s common for a healthy woman in her twenties to experience some PVCs – extra, abnormal heartbeats that begin in one of the ventricles. That’s what my doctor said when I was rejected by the blood bank for having an abnormal pulse. She wasn’t making it up; it’s true.

It’s not healthy to have more than one hundred PVCs a minute.

My family doctor was smiling when she told me what the sleep study found. Don’t judge her for giving me bad news in a light-hearted way; in this case, bad news meant good news. Knowing that my heart was working so hard to pump blood through my body, she had no doubt in her mind that I was tired because of the PVCs. My other symptoms (pain in shoulders and neck, headaches, blurred vision, etc) could also be related to my heart issue.

Woo hoo, there was finally an explanation! Unfortunately, we also had to consider why my heart wasn’t pumping well. PVCs are a symptom, not a disease, and the cause ranges from easily fixed (viral infection) to deadly (Hypoplastic left heart syndrome).

Dare I say, the news gave me pause.

The tests started right away. Remember that bulky piece of equipment I had to wear? It was a Holter monitor, a device that recorded my heart beat for 48 hours. It confirmed the PVCs that I had the night of the sleep study weren’t a fluke. My heart had thousands of extra beats over the course of two days.

Then Dr. Heart (my favourite specialist so far) put me on a treadmill and found out that my heart didn’t freak out under stress. He thought that was great news, but needed to do one more test just to check something out, as doctors often say.

I’ll never forget my first echocardiogram (basically an ultrasound of the heart). Many people cry when they see a growing fetus on an ultrasound screen. I had to choke back tears when I saw the image of my heart working so hard to keep me alive. It was obvious, even to me, that my heart was sick.

I described it to my family by doing a dance. I stood tall, stretched my arms high above my head and pumped my legs up and down as fast as I could. That was my tired heart. Except my heart couldn’t fall over when it was too tired to keep going. Well, I guess it could, but I’d be dead.

There was one more test before I got the news. An ECHO is requested by doctors to look at the structure of the heart, and it can also measure an ejection fraction (how much blood pumps out of the left ventricle with each heart beat). A MUGA scan is a more accurate way to measure the ejection fraction (EF).

A normal EF is 55 to 70 per cent. Mine was 27 per cent.

Dr. Brain

The first real clue about my illness came from the sleep study, not the MRI, though it was a neurologist who told me about it.

As soon as the sleep study results were available, before I could see my family doctor, I saw Dr. Brain. When my husband and I sat down in the waiting room, I was convinced that I had Multiple Sclerosis. Turns out, I was one hundred per cent wrong.

We were lead into a small room after waiting for about twenty minutes. If you compared the layout of the room to a tennis court, the doctor’s chair was sitting on the net, and his large desk, two chairs, a sink and counter top were squished in the back court.

The neurologist tested my reflexes and tickled my feet to watch how my big toe reacted. He did some other basic physical tests that I can’t remember. Then he asked me to sit down.

Dr. Brain didn’t sit behind his desk to give me the news. He sat on a stool beside his sink and stared at my file when he told me that I absolutely did not have MS. I was stunned.

There were no lesions on my MRI. It was clean.

I started to grasp for answers, because weird things had been happening to my body for five years and I was sick of it. I asked him about my symptoms and I pointed out the similarities to MS.

He started to blow me off and I got angry. I raised my voice enough to disturb his assistants working in the next room.

I would be embarrassed about my behaviour if it hadn’t forced the doctor to look up. The tone of my voice snapped him awake. Wait, he might have thought, this is a real person.

Dr. Brain softened. When he looked up at me he showed true empathy. He, of all specialists, is used to people who have gone for years without a diagnosis and without relief. And that’s when he told me there was something odd about my sleep study results.

Focus on your heart, he said. There are too many extra beats.

My Heart is Yours

Some couples are always together.

I’ve heard tales of couples who lived an entire life together without spending one night apart. Stories like that always make me wonder about business trips. Does one partner follow the other on every business trip? Do the kids go too?

Maybe it’s an exaggeration. If not, it sounds a bit co-dependent; at the very least, it would be a logistic nightmare. Those stories never inspired a sense of awe or desire in me. Keep in mind, though, that I completed two years of college while living about one hour away from my boyfriend – the guy who is now my husband – so I know we can be apart and not fall apart, and I consider this an accomplishment.

Those facts aside, I’m pretty sure the night of the sleep study was the first night we had spent apart since I graduated from school.

That night, I marched up to the front door of the hospital with my pillow tucked under one arm and a knapsack packed with pills and pyjamas over my shoulder. I walked down the hall toward the sleep labs, unaware that this would be the first of many visits to those rooms.

I looked around the lab while I changed into my pyjamas. There was a hospital bed with a warm blanket and soft pillow. There were curtains on the window, a lamp and clock on the nightstand. The walls were painted a soft pink instead of the standard hospital green. No television. Oh, there was also a big video camera mounted in the corner of the room near the ceiling.

A nurse hooked me up to a machine that would monitor me throughout the night. There must have been twenty-five wires attached to me before she was done – leads to monitor my breathing, pulse, brain waves and sleep stages.

In the bathroom across the hall, I took my pain pills and my sleeping pills. A small monster stared at me as I brushed my teeth. White wires veined my long, dark hair. The wires stuck up from my scalp and then looped down toward my shoulders.

Little did I know, becoming that monster for one night was my first step back to wellness.

I slipped back across the hall in my socks and sat on the bed, testing the firmness of the mattress. With the lights off, the glow from the small lamp gave the room a homey feel. It was only 9pm, so I took a book out of my knapsack and gingerly laid my head on my pillow. The wires made it uncomfortable, but not unbearable.

Still, it was hard to concentrate on the novel. The results of the sleep study would be disclosed after about two weeks, around the same time that I was scheduled to see a neurologist, Dr. Brain, and possibly get a diagnosis of MS.

As anxiety crept into my veins, threatening to keep me awake all night, I closed my eyes and thought of my husband. We were apart that night, but my heart is always with him. The worries quieted and I soon fell asleep.

My Doctor is a Hypochondriac

So there I was, barely held together with anger, on the verge of depression, in pain and exhausted. The pills the doctor had prescribed made me numb. Literally, the top two inches of my skin was desensitized by the drugs.

It was hard to advocate for myself in that state.

But I knew without a doubt that something undiscovered was happening in my body, and it was clear that nobody was willing to push for more tests after I was banished to Fibromyalgia Town.

I was getting worse, though. Waking up in the morning was depressing. The sleeping pills I took kept me asleep, but didn’t help me get the rest I needed to feel restored. I struggled to start each day when I felt like the previous day hadn’t ended. Some days I was too tired to get out of bed.

Those days pushed me to advocate for my health. I couldn’t accept that I would just get worse and worse and worse until who knows what. Until I became disabled permanently? Until I completely lost my mind?

No. I had to do something. So I went to my family doctor and pleaded with her. Because I was convinced at the time that I had MS, I asked her to send me for an MRI.

She told me, her voice full of conviction, that I didn’t have MS. She booked an MRI to humour me. I also asked her to send me for a sleep study. I figured something was wrong there. My doctor said the study would not confirm or dispel the Fibromyalgia diagnosis, but I didn’t care, I wanted to get some sleep.

Despite my doctor’s convincing tone, I thought the MRI would show MS. I was wrong.

However, it turned out that my demand for more tests would lead us to the right diagnosis in quite a roundabout way.