Anxiety vs Reason

Two amazing things happened at the same time: health and pregnancy.

I had faith that I would have enough energy to keep up with the family we were starting. My heart was light and strong.

At the beginning of my pregnancy I worried more than most soon-to-be-first-moms. Every missed beat was followed by a rumbling through my chest. Because hearts pump the blood that carries oxygen, I had some anxious moments wondering if the baby in my belly was getting enough to survive.

I asked my doctor, instead of obsessing, and I trusted her answer. Deep breathing calmed me down on several levels.

Since diagnosed with cardiomyopathy, I have been the luckiest girl in the world. My heart was fixed with medication, not surgery or a transplant. I am alive and captivated by life. We got pregnant quickly.

I also had an amazing, easy pregnancy up until the very end.

No morning sickness, just a little nausea at night; no trouble sleeping in the first or second trimester, just weird dreams about the huge upcoming change; no hemorrhoids or swollen feet or hairy nipples.

And the baby did great, too, in my belly. Every ultrasound showed movement and all the good stuff you’re supposed to see in ultrasounds.

Yoga kept me focused, limber and relaxed. If you haven’t tried it, try it. Even when things started to get a bit weird, yoga helped me keep it together.

Suddenly, at the end of my perfect pregnancy, I wasn’t peeing as much as I should have been, I started gaining about five pounds a week and my blood pressure was up every other prenatal check. By my thirty-eighth week, my face was so fat that I could hardly find my eyes. And those thin ankles I was telling you about could no longer fit into my boots.

I wasn’t worried though, because the baby was still doing great. I kind of thought I had been getting off light up until that point; I was just paying my dues.

Sometimes reason keeps you moving, and sometimes it trips you up.

Perfection

I’m going to jump right from sorrow to babies.

After a year of heart medication my ejection fraction went from 27 to normal, and I was less tired and less breathless.

Dr. Heart took me off the pills to see if my heart would pump well without assistance. I had to wait for six months before getting another MUGA scan to measure my heart function. Near the end of it I was getting insanely impatient.

The glaring green hands on my biological clock were killing me, but I had to wait for the green light.

Nurse Heart makes fun of me now for being so impatient. I thought Dr. Heart was slow-playing me, so I called to bump my test up a month. My plea worked.

All the anxiety in the world didn’t change the results of my test. (There goes the straightforward mind-body connection theory.) My heart passed and we threw the condoms in the garbage. I wish I had cut them up into little pieces and then burned them in a cathartic bonfire, or at least mailed them to a country with limited access to birth control; it would have made a great story.

We were lucky: we got right to it and got pregnant within three months of trying. I felt amazing. The shift from cautious to all-out-cardio quickly killed my breakable -complex.

And then I was back to fragile with a teeny tiny embryo in my belly. I was happy and comfortable; I couldn’t ask for anything more. My life was perfect. I didn’t feel completely healthy when I stopped taking the heart medication, but as soon as that embryo burrowed into my uterus lining, I started feeling better and better.

But it was a long journey. I was still classified as sick, because I was diagnosed with Fibro, and I still sometimes think this is the story of somebody with life-long health issues.

It got worse – scary worse – before I woke up in the hospital as a new person. I’ll tell you all about the bad stuff soon.

Confidence

The longer I was sick, the harder it was to imagine being well. Remembering healthy Jenn was more imagination than memory because I was so far from it, in both time and space.

As I began to resign to a life of understanding simple ideas only after a replay, I pulled away from my family and friends. Only one person believed that my brain symptoms were caused by my heart: my family doctor. Dr. Heart thought it had more to do with Fibro than anything.

So I thought that even if my heart was fixable, I would still be stupid.

I couldn’t write when I couldn’t connect one simple idea to another. The skill I had was gone; and my dream was out of reach. I was heartbroken.

At a certain point, after being lost in a story for a long time and finding no way to get my thoughts across, I realised that it was out of my control. I couldn’t write well enough to fake it with good editing. My brain just didn’t work the way it had before I was sick.

Unintentional-existential-crisis-mode kicked in. Who is a writer who can’t write? Useless.

Okay, if a wordless writer is useless, I reasoned, then I have to become someone else. My parents always told me that I could be whatever I want to be. Who did I want to be?

I didn’t want to be sick, but my world was defined by cardiomyopathy and Fibro. They were part of the new Jenn. I wasn’t sure if I could be more. And as I was trying to figure out my new life and my new mind, I couldn’t connect with the world.

Never mind the fact that I felt like I was living under water while my friends and family were living on land; change is hard for relationships. Ambiguity is worse. When there is nothing to confide in people, it’s hard to connect.

Phoebe: Want to go to a rock concert tonight?

Jenn: I don’t know.

Phoebe: Are you interested in rock climbing?

Jenn: I don’t know.

I was so focused on making a new life for myself, I never imagined that I would wake up in the hospital one day pretty much back to normal. My mind couldn’t dream up a story with an ending like that.

Just Jenn

I spent a lot of time in that sleep study lab because it was the Heart Function Clinic by day.

Every month for three months, and then every other month after that, I walked through the hospital doors with my heart in my throat, wondering if it would be the month I got the bad news. I thought I'd have to have surgery. It never occurred to me that the bad news was over.

They kept track of my weight because swelling is a bad sign with cardiomyopathy. After I weighed-in at the start of each appointment, they hooked me up to the ECG machine.

I had to get undressed in one of the sleep labs, put a hospital gown on backwards and lay down on the bed. When Nurse Heart came in, she would stick about five suction-cup-thingies on my chest, stomach and ankles, and then plug them into the wires that fed my heartbeat to the fancy machine.

If the printout looked like a mountain range with peaks destroyed by a crashing plane, then I still had PVCs. As I laid on the bed, waiting for Nurse Heart, I would wish the pilot had finally checked his engines before boarding his plane, but those flat mountains stayed with me for a while.

And then I’d have to tell Nurse Heart how many pillows I slept on and if I had been out of breath enough at night to wake up. She would take my blood pressure while I sat on the bed, and then again when I stood up.

Dr. Heart would listen to my chest, check my ankles for swelling and ask me the same questions.

They were both really good at soothing my fears when I was brave enough to talk about them. Even if there wasn’t an answer, Dr. Heart had a way of focusing on the now and on the good possibilities.

He was never impatient with me or dismissive. I didn’t know him before the PVC discovery, but I think he’s the kind of guy who would have treated me with respect no matter what.

Cardiomyopathy changed the way many people treated me. Suddenly, I wasn’t wasting their time.

Since I was diagnosed, doctors have been calm and sympathetic. The lab techs taking my blood, the receptionists at the cardiogram clinic and the volunteers at the Heart Function Clinic have all been extra-nice.

Friends and family members who knew about my heart got really serious about my health. The light well-that-sucks-but-at-least-you-won’t-die attitude was abruptly changed to an oh-shit-this-is-not-good attitude.

People were worried; people were just-in-case-nice. As in, just in case you die; just in case you’re life-changing sick.

I wanted to have a life outside of nice and away from the hospital. When I took off the gown and didn’t talk about it, I was just Jenn.

You Must Have Been High

The first person outside my family to call me a hippie was my high school History teacher. He was referring to my spirit.

Some hear hippie and think pothead. Co-workers who didn’t know me well may have gotten that impression, though they never said it to my face. I was a laid-back, peace-loving girl. All that was missing was a perma-smile. They decorated my pigeonhole when I started wearing sunglasses to work and forgetting my words.

Little did they know, the sunglasses were shielding my eyes from the burning white computer screen that I stared at for eight hours a day, five days a week. My eyes were super-sensitive to the light.

I’ve always been peace-loving, but the laid-back Jenn was born from necessity. It was a combination of drugs and systematic shut down. My body couldn’t handle too much stress, so I started ignoring it. Yup, just like that. With the help of my dad and my husband.

My dad told me to asses a situation by asking if it was going to matter in five years. Wow. That helped me big time.

My husband has always been an easy-going guy. Some days it takes mountains to move him. A bit of his mindset has rubbed off. He’s also the funniest guy I know, and laughing until pee almost comes out is a great way to forget stress.

The off-label pain meds messed with my chemistry just enough to keep me on an even keel until I was diagnosed by Dr. Heart. Unfortunately, I had to switch it up a bit at that point, and I got stuck taking another, not-so-good off-label pill that altered my brain function a little too much for my liking.

When I started taking beta-blockers to fix my heart, I would have stayed calm if a rhino charged me. Oddly enough to those who don’t believe cardiomyopathy causes shoulder pain, my muscles have never been more relaxed than when I was on those meds.

I was a hippie-at-heart even as my heart was only flesh and blood, pumping with the tenacity required to keep me alive; because my brain was lead by my heart into a calm existence.

Because my cardiomyopathy diagnosis didn’t automatically rule out Fibromyalgia, I was on pain meds and heart meds at the same time. And being over-medicated didn’t help me find my words.

Sometimes in the vein of doing no harm, harm is prolonged.

Are you there sorrow? It's me, Jenn

When I was diagnosed with cardiomyopathy, Dr. Heart told me I had a thirty-three per cent chance of getting better, a thirty-three per cent chance of staying the same, and a thirty-three per cent chance of getting worse.

That left me with a good chance I wouldn’t have a strong enough heart to ever get pregnant. Hearts in pregnant bodies have to work harder than other hearts.

I stared at the glow-in-the-dark hands of my biological clock for about four months before writing this diary entry:

1:50 am – I am struggling with the possibility that my heart will never be able to handle pregnancy.

The waiting list for adoption is long. Baby = forever; five-year-old = five year wait.

Adopting a child from another country costs at least $25,000 - more than the down payment of our house. We’ll never have that kind of money.

1:54 am – I have to brace myself for the possibility that my heart cannot handle pregnancy. Otherwise, I might break down.

I am rigid. I wonder if this is related to my heart condition. I wonder if everything is somehow connected to my heart.

Tim’s right… this is ridiculous. I can’t use the limited information that I have about my body to hold myself hostage. There is still life to live. It’s not about waiting for test results. But it’s hard to ignore that flashing red light.

I’ve been cautious ever since the episode of ‘vertigo’ in the shower. This has possibly saved my life countless times. My body was systematically shutting down to stay safe. Survival instinct kicked in, stopped me from feeling too much and realising too much stress, because my heart is bogged down by stress.

In the end, my fail-safe will be total shut down.

Can death possibly be a survival mechanism?

Double Up

When I was diagnosed with cardiomyopathy my husband and I had a heart-to-heart with Dr. Heart about babies.

Now, I`ve never been the girl who gets gushy over babies.  They cry, they puke, they poo and they can`t make jokes.  I was convinced I would be the one to break a baby if I had to hold her.  Despite all of that, I wanted my own, but not until I was about thirty.

A few things changed since I made those plans.  My biological clock started ticking very softly when my mom-in-law was sick; we thought about starting our family so she could meet her grandbabies.  And when she was dying, we really thought about it. 

It turned out to be a good thing that we decided not to bump up our baby plans, because they didn`t find the cardiomyopathy until three months after she died.  If I got pregnant with a sick heart, I`m not sure we would have made it.

The clock got louder when I had my first snuggle with a baby.  He nuzzled into the hollow of my neck and I melted.  He was so beautiful and helpless, and he wanted me to love him.  Me.  With my past.  With my flaws.  My love was enough for this small baby.  And his love for me in that moment was so innocent and pure, with no guilt, no demands, no judgement. 

I didn`t know babies could show love until that moment.

The rapid tick-tock shocked me when Dr. Heart very gently told us that we could not get pregnant while I was taking my heart pills.  He asked what birth control we were currently using (The Pill), and told us why it was important to double-up (always use condoms or spermicidal foam as well).

The meds I needed to fix my heart were known to cause major birth defects, including under-developed skull, and could also cause foetal death.  My own heart pulled the plug on my clock.  But it was one of those old-fashioned wind-up clocks.  Daylight charged the glow-in-the-dark hands; it was the only thing I could see as I was trying to fall asleep every night.

With All My Heart

27 per cent, eh? No wonder I couldn’t clean the bathtub or sweep the floor without needing a nap. Suddenly my breathlessness and fatigue and weakness made sense.

Seriously, I couldn’t clean the toilet and wash the dishes in the same night, so I would do one on Sunday and the other on Monday. Working full time exhausted me. Thursday was my favourite day of the week, because by Friday I was too tired to appreciate the upcoming weekend.

I sit on my ass all day in an office.

When my doctor called me at home to tell me the diagnosis, it didn’t sound like she was smiling. She was sporting her calculated-calm voice; the one devised to dispel panic. Unfortunately for me, that tone now creates a knee-jerk anxiety response.

The Diagnosis. Dun, dun, duhhhhh!

My heart skipped a beat (wink, wink) when she told me that I had cardiomyopathy, aka heart failure. Heart failure? Wait, I’m not dead. Nothing has failed. But it was failing. That’s why I had to start the medication right away.

As far as diagnoses go, this one wasn’t the greatest. First, there’s the fact that my heart was messed up. Hearts are serious. Second, cardiomyopathy literally means: hey buddy, you’re heart isn’t working but we aren’t sure why. Could be deadly, sucker.

Long way from Fibromyalgia.

I don’t want to give any Fibro sufferers out there false hope that they, too, could have a possibly deadly heart condition. It’s just what happened to me.

After I got over the initial shock of going from Fibro to cardiomyopathy, I spent lots of time thinking of heart puns. For some sad reason, the only thing I really came up with was What? I heartly know you.

I didn’t die. Obviously. Well, I guess I could be my ghost. But I’m not. So what’s left to write about? My heart. Figuratively. I became quite depressed when Dr. Heart told me things that no woman wants to hear.

Love,

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.