From cardiomyopathy to heart failure

When Adrienne was diagnosed with hypertrophic obstructive cardiomyopathy (or what she liked to call ‘hocus pocus’), she did not fully understand where it would lead. This is her story in her words.

It was Christmas Day and Tauranga Bay was an idyllic camp site. Before our snapper lunch we walked the length of the small beach. I left the family to clamber up the bank and walked along to the wooden steps. On the top step everything spun and I draped myself across a car bonnet. Once the world sat still I returned to the campers and said nothing.

I also said nothing when I developed chest pain at Miranda and then at Te Papa. Nearly home. I had experienced chest pain on exertion for the last few years, but this was more extreme.

I saw a cardiologist on my return. When I failed the treadmill test it was off to the catheterisation lab where I was told my coronary arteries were healthy and I needn’t present again with chest pain. Although I was dopey with the after-effects of sedation I’d not lost my spunk: “Well something is causing the pain and it needs to be dealt with.” Reluctantly the cardiologist agreed to perform an echo stress test, then at last they found the problem.

“You have HOCM, short for hypertrophic obstructive cardiomyopathy.” said the cardiologist. “We have to fly you to Christchurch for a septal ablation,” Drowning in words, I could only absorb one fact at a time.

“I have something called hocus pocus,” I told my husband. “There’s a bulge in my septum partially blocking the flow to my aortic valve.” They had shown me the large swelling on the ultrasound so at least I now knew what a septum was.

Off to Christchurch for treatment

The transfer went well and I still recall the snow on the alps en route. While I was flying, my closest friend flew from Wellington to Nelson and drove Garry down.

I was admitted to the Intensive Coronary Care Unit and over the next few days had a number of tests. The interventional cardiologist spoke to me on three occasions, checking I was aware of the risks associated with a septal ablation and if I was sure I wanted him to go ahead. “We balloon your artery then inject alcohol which will cause a heart attack and wither the obstruction.” I preferred not to think about it but was emphatic that I wanted the procedure done. At that stage I couldn’t walk up the simplest slope without getting chest pain.

Nearer ablation day my daughter arrived from Auckland and the cardiologist took us to a small private lounge for a chat. “You realise cardiomyopathy is a congenital condition and you and your brother have a 50 / 50 chance of inheriting the faulty gene.” We didn’t realise and this was a shock for us both.

“I’m so sorry,” I kept saying, feeling as guilty as sin...

On the day of the ablation I was wheeled to the cath lab and parked outside for the long wait for my turn. One of the hardest things so far had been the waiting. Once in the lab I was sedated, which left me able to hear but not speak. Step one was to insert a temporary pacemaker. I could feel pressure, but no pain. The cardiologist, a tall man, with a loud voice, explained things as he went. Then came a deep, crushing pain. I heard someone groan, heard someone say, “Give her more anaesthetic,” then I faded out.

Recovery ups and downs

I woke up back in the ward, felt nauseous and the chest pain came and went all day. But the next day I felt great and could see the world in technicolour once again. It was like colour had leached not just from my sight, but my world and had now returned. “It’s a miracle,” I said.

The following day I was talking to my husband and daughter when I felt a tickling sensation in my neck, then heard an alarm. Three nurses ran in. “Are you alright?” they asked. I said I was fine but later learnt that I had gone into complete heart block and the temporary pacemaker had cut in.

The next step was a return to the cath lab to have a permanent pacemaker inserted. “You’re unlucky,” the interventional cardiologist said. “This only happens in 10% of cases.”

During my three weeks as a coronary patient I remained ill-informed as to the implications of having cardiomyopathy. At one stage I was given a diagram of a heart with a small biro blob drawn beside my septum. At the time this lack of knowledge didn’t worry me as I was so delighted with my hugely improved health. I naively believed that after the successful septal ablation I was done and dusted and my heart problem was solved.

From cardiomyopathy to heart failure

A year later I began tiring easily and was often short of breath. I was sent for various tests and another year went by before my GP said, “I think this might be related to your cardiomyopathy. You’ve gained weight, complain of leaden legs and there are crackles at the base of your lungs.” So began my journey with heart failure. Fortunately my new cardiologist specialised in heart failure.

She explained that cardiomyopathy is progressive and my heart muscle will continue to stiffen and thicken. She drew diagrams and answered my many questions.

What was my reaction? I was angry that I’d been so woefully ignorant, so my next step was to consult “Dr Google” where I discovered the UK cardiomyopathy site. An unexpected plus was being buddied to an English woman my age with the same condition. “I see you’re a writer,” she emailed. “Why don't you write about your journey with cardiomyopathy.” After some deliberation I decided I would. I knew it would be difficult to write as I prefer to be private about the state of my health, and I also knew I wanted to write an upbeat book, not maudlin in any way. So I set to.

Hypertrophic obstructive cardiomyopathy (HOCM) is a relatively rare condition so I broadened my topic and the book, currently sitting with a publisher is called Take Heart – my journey with cardiomyopathy and heart failure. It took two years to write as I included the story of four others with cardiomyopathy.

During those two years my health situation suddenly changed. On New Year’s Eve 2014, I experienced chest pain and was given my first of many transfusions.

“It is a demand, supply problem,” explained my cardiologist. “When you become anaemic as a consequence of your leukaemia, your heart muscle requires more oxygen.” I had been diagnosed with a form of leukaemia two years before my septal ablation and with excellent support and management the two conditions had run along in tandem until then. During my transfusions in the day stay ward I heard many stories. I learnt that many of those receiving transfusions also had what they call co-morbidities.

I wasn’t unique. As I became used to the routine of three-weekly transfusions I once more went into management mode. I am fortunate in that I always look well and when I’m asked how I am I say, “Fine,” even when I’m not. But sometimes I have the need to share where I’m at and there are three friends I confide in. I spit it out, sometimes they make suggestions, then we move on.

Several months ago I was hospitalised needing IV diuresis. Until then my game plan was to add a stronger diuretic when my fluid levels rose. Suddenly this didn’t work. “You store your fluid in the upper abdomen,” explained the cardiologist. “This is affecting the absorption of the medication.”

Once IV frusemide was administered, the graph that I use to chart my weight nose-dived and three days later after lots of peeing, I was discharged feeling far better. This happened three times and the third time I asked, “Could I have this treatment in the community? I’m not sick, yet I’m taking up valuable space in the ward.”

“I don’t see why not,” was the answer. So this is what I now do.

My health journey has been a roller coaster ride but over time I have developed coping tools. First, retaining a sense of humour. Next, working from game plans that I develop with my health professionals. Being well-informed is essential. I prefer explanations from medics but they never have sufficient time so I ask questions of the cardiomyopathy nurse via the UK cardiomyopathy website, or our newly appointed heart function nurse.

Another important tool is distraction. For me it’s writing, but last year I felt like a change and made a recycled wine bottle wall.

Lastly, it’s helping others. Always being on the receiving end is not great for your morale and I like to redress the balance where I can. It may be by writing an email, or listening or making the person in need a bead strand to hang in their window to catch the light.

I trust, for those of you with a similar condition, this has been helpful. Although our journeys differ, it is always useful to see something through different eyes.

 

Written in February 2017 

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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4 Comments

  • Colly 22 March 2019

    Thank for your story Adrienne. I have HOCM , Afib and other things. I had Alcohol ablation last year but it was not successful so waiting for another, but its good to hear how others cope with nasty disease. I would like to write my journey so far but its to make that move. I wish you well.

  • Thomas 1 November 2018

    Thanks for sharing Adrienne. I’m living with cardiomyopathy and heart failure and its good to hear about your coping methods. I need more laughter too.
    Its good to hear your story and i’m gonna look for your book.

  • Merys 24 July 2017

    Thank you, Adrienne, for your story. In June I learned I have apical HCM, and my husband and I are both sure we heard the cardiologist call it “hocus pocus”. So, of course we are calling it that.
    I also have a bicuspid aortic valve and dilating aorta above the valve, so surgery is likely next year.
    Considering the way I was feeling, and having had atrial fib since the age of 28 or 30, which hadn’t responded to cardioversion, I was expecting maybe needing a stent or a by-pass. Sure wasn’t prepared for this.
    Adrienne, I am happy for you to contact me , if you wish.
    I may write of my own journey after my op.

  • Anna 19 April 2017

    Thanks for your story. It’s given me an insight to some of the things that have happened and are happening to me. Everyone says to me too, Oh you look so well.!!! Have a little laugh to myself. If only you knew!!!!  It’s heartening to hear other people’s story. Thanks again.