A ratbag diagnosis: Surprise! You have POTS.. and it’s nothing to do with kitchenware.

We were in a big hardware store sometime in early January, standing in front of a shelf of solar lights as we talked about which ones would look best in our native garden. It was hot outside and almost as hot in, the fans doing little to move the heavy air around the warehouse.

“Argh,” I groaned, as I plucked my shirt away from my back. “It’s so hot in here. Are you hot?”

My husband shrugged, and I narrowed my eyes at him. He looked as refreshed as when he’d gotten dressed that morning. He wasn’t even sweating.

“It’s warm,” he agreed when he saw my face. “But it’s not that hot.”

By now my chest was heaving as I tried to suck in enough air to stifle that panicked I’m drowning feeling I’d been experiencing on and off for the past couple of weeks. I pressed my hand to my heart and felt it racing.

“Can we hurry?” I asked. “I can’t breathe in here.”

We pulled a set of lights off the shelf and made our way to the checkout as quickly as we could, only my default walking pace – purposeful and annoyingly fast for anyone shopping with me – was decidedly slow.

“Are you okay?” my husband asked as we climbed into the car and he cranked the AC, directing the vent towards my face.

“I don’t know,” I admitted. “I think I need to get my iron levels checked.”

But, I didn’t get my iron levels checked, not for another two months. It was the school holidays, and we had a lot going on. We lost a dear friend to cancer, we went away, our son had a severe anaphylactic reaction while at a remote camping ground and had to be taken to a country hospital via ambulance, our daughter started high school.

In February, our son brought home one of those miserable viruses – the ones that go from person to person, blocking up noses, and inflaming ears, and making heads pound. When it was my turn, it took me a long time to get over it. I’d wake up each day expecting to feel at least a little bit better, but it was exactly the same as the day before. I had no energy; all I wanted to do was lie in bed. Even walking to the other end of the house felt like an enormous effort.

Then there was the heat. The hottest summer on record, days and days of stifling temperatures, wearing wet clothing, spraying each other with water, tossing and turning all night. Everyone was hot, but I was suffering. I felt like I had weights around my ankles every time I walked. I couldn’t think properly. My feet were ridiculously hot and heavy. We joked that they were “hot bricks” and I’d press them to my husband’s back at night, sighing in relief when they touched his cool skin. And that breathing thing was back with a vengeance.

But I still didn’t go to the doctor. Because I had changed to a vegetarian diet a few months earlier, I assumed I was low in iron. I started iron tablets, then B12 tablets, and was convinced that it would solve whatever was wrong with me. Besides, what was I going to say? Ummm…. the heat is making me really hot? I’d had enough experience with cynical doctors over the years to have more than a small measure of performance anxiety when it came to demonstrating my symptoms. Besides, it would go away – right?

Then about a month ago, I was walking up the small incline to collect my son from school and by the time I got to the top I had to hold onto the fence for a minute to catch my breath. My head swam, and I lost my peripheral vision for a few seconds before everything came back into focus. That’s weird, I thought. Better see if I can get those iron levels checked. As it happened, the doctor had an appointment that afternoon. I picked up my son and went to the clinic, where I informed my GP that I was breathless and I needed some blood taken. Job done.

Only, the doctor didn’t like the sound of my symptoms. He’d noticed the way I could barely speak to him because I was puffing like I’d run up a flight of stairs.

“Do you ever feel your heart beating? Like palpitations?” he asked as he sat back in his chair and crossed his arms.

“I guess so,” I replied. “Sometimes it races. Or kind of flutters? But I’ve had that before when I was anemic and needed a blood transfusion. So I’m sure it’s just that.”

He wasn’t convinced.

“Let’s do an ECG. Just to make sure,” he said. “We’ll do the bloods as well.”

“Ok,” I said, thinking to myself, Oh, great. How much will this cost? What a waste of time.

Over the next two days I had my blood taken, and I did the ECG, and then it was the weekend, and we had relatives to stay. I spent that weekend either sitting or lying down. Washing the dishes had me bent over, eyes squeezed shut, chest heaving as I tried to get enough air into my lungs. I couldn’t think of the word ‘petition’ one day and had to stop mid-sentence, eventually having to describe it so that my husband could give me the word I was looking for. I remember him looking at me for a second too long after that happened because I don’t forget words. I’m a writer; I’ve had a lifelong love affair with the things. But it was easy to brush it off and forget about it. Life was busy, after all, and I was still tired from that virus. After one particularly bad day, I did was most people do, I started googling. I read about iron infusions, convinced that my levels were so low I’d have to spend a boring day in the hospital with a needle in my arm. Maybe I’d need another blood transfusion. That wasn’t so bad last time, I remembered. In fact, I’d felt pretty great afterward.

Tuesday arrived, and I went back to the clinic to get my results. I saw a new doctor, and he was very concerned at the way I was breathing. He put one of those oxygen/heart clips onto my finger and saw that my resting heart rate was 108. I started prattling on about my iron levels, and he patiently waited for me to finish.

“Well, the thing is,” he said, “your bloods look great. Iron is right in the middle.”

Oh.

“I’d like you to go and get a CT with contrast of your lungs. Today. Here’s the referral. Can you call me to let me know when you’re getting it done? I’ll ring you this afternoon with the results.”

I had the first small tickle of fear in my belly then. I’d only ever heard that trace of urgency in a doctor’s voice once before, and that was when my then three year old had to have an MRI of his brain. I promised to go straight to the radiology place and numbly went to pay. While I was at the counter, a call came in, and I heard my name. The receptionist said it was the cardiologist who had reviewed my ECG, and he wanted to speak to the GP, so I should wait. They talked for a long time. That’s when I knew.

There was an abnormality on my ECG, and the cardiologist strongly urged me to get the CT with contrast urgently. I gathered my papers and stepped out into torrential rain. Unable to run to the car, I shuffled down the path as quickly as I could, my hair dripping and my mind racing.

It was all systems go from that day on. ED admissions, Holter monitor, a cardiologist appointment that had me bundled into the car with an oxygen tank in the back, bound for a hospital an hour away. Admission to acute care, then acute cardiac, more CT’s with contrast, chest x-rays, too many blood tests to count. I had gone from being a busy mum with a million things to do at once, from working with an editor on my latest book – to being in a room with three old men, stripped of my privacy, unable to walk to the toilet without first ringing for a nurse to accompany me.

Check out this video of my monitor when I stood up next to the bed. It felt like going from resting to the end of a workout in the space of 20 seconds accompanied by a massive adrenaline rush (the bad kind, not the ‘high’ kind).

Every time I stood up, my heart monitor set off every alarm in the ward, and I had nurses calling out to see if I was okay. I had to sit to shower, to brush my teeth, because the combination of standing and moving my arms was too exhausting. I learned to sleep with beeping monitors and lights in the room, with the sound of my roommates snoring and farting in their sleep, with the laughter of nurses and the whine of IV trolleys being wheeled along the linoleum floor. I had a low-grade fever; I had a serious BP crash; I fasted for 40 hours waiting to find out if I needed heart surgery. I spent long frightened hours thinking about my life expectancy, about cancer, about heart disease. I thought about that movie Beaches and tried in vain to remember the heart condition that killed that lovely lady with the long brown hair. I learned to be on the receiving end of help in the form of childcare, meals, gifts, company – something that I’ve never been good at. I wrote down passwords and life insurance information; I tried and failed, to think of what I could write down for my children in case I didn’t come home.

And then finally, the diagnosis everyone had suspected but couldn’t confirm until everything else was eliminated. POTS or postural orthostatic tachycardia syndrome. A miscommunication between the autonomic nervous system and the heart. Coupled with my very low blood pressure and low blood volume, it was no wonder my heart was working overtime trying to pump the blood that was pooling in my legs and abdomen north to my heart and brain. My cardiologist called it a “ratbag diagnosis”. As a doctor, he likes to fix things. POTS can be managed, but it’s a chronic illness. He expressed his regret at not being able to order a procedure that would cure me. When he was ready to discharge me, he gently let me know that the medication I was taking would help, but I wouldn’t be the way I was before.

I’ve been home for two days. I still haven’t tackled the dreadlock situation on the back of my head because brushing my hair remains too tiring. I’ve walked a bit. I’ve spent a lot of time sitting. Yesterday, I wanted to pick my son up from school and ended up sitting on a sofa in the office because I couldn’t cope with standing for 5 minutes before the bell rang. I couldn’t make it to the car, so my husband had to drive down and pick me up from the entrance. I realised I need a mobility card for my car, and a wheelchair for longer trips out, at least for now.

I’ll be wearing compression stockings to my waist, even in summer. I need to drink at least 3L of water a day and eat a high salt diet and wear a medic alert bracelet and monitor my heart rate and blood pressure. And then there’s the medication I’ll be taking, even though I hate taking drugs, and have devoted years of my life to natural medicine and nutritional healing, and not taking drugs. It’s a lot to get my head around.

I’ve been lucky in life in that I’ve never had my choices drastically limited until now. All of the things I knew I’d probably never do (run a marathon, become a cross fit junkie, do a major overnight hike) were still possibilities. There’s a big difference between choosing not to do something and not being able to. I wonder what my life is going to be like now. How the family will have to adapt and what concessions they’ll have to make. I think about the medication that makes me woozy and wonder about my writing, my memory, my clear thinking, quick brain, and wonder if accessing creativity will be like wading through mud now, instead of gliding through water.

This is all new. As it turns out, it’s kind of new for my cardiac team, too. When I wasn’t being referred to as “bed 21”, the nurses called me, “the young one”. They deal with veteran smokers with clogged arteries. They don’t see women in their thirties with strange symptoms very often, and certainly not ones with anatomically perfect hearts.

So there you go. If there’s one thing you should take away from my story is that if you feel something – do something. I don’t know if it would have made a difference in my case or not, but it definitely would have if my diagnosis were something more serious, like aortic dissection (which was on the cards for a while). My reluctance to see a doctor was a little bit know-it-all and a little bit denial. There are enough health issues in my family already, in the back of my mind I think I was unwilling to add to the list. From now on, though, I am on the list. On the top of the list!

And I realise now, it’s the way it should have been all along.

2 Comments

  1. I’ve just come back from admitting my elderly Mum into the hospital cardiology ward. No idea yet what her diagnosis is, but your description of the aching legs, no energy, not being able to breathe, I saw all of these things in my Mum’s experience so far. Thank you for writing this, it is beautifully written. Your fear is palpable but so too is your courage. Kia Kaha Rebecca. xx

    1. Oh all the best for your mum, Vicki. It’s tough being in hospital and not knowing what’s going on. Hoping for speedy treatment for her. Take care x

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