“If you’re going through hell, keep going”

Cardiomyopathy, atrial fibrillation, heart valve disease and an aortic dissection are a lot to deal with. But that hasn’t stopped Merys from going to the gym or playing the bagpipes. Her attitude is “onwards and upwards”.

My Mum was born in 1931 with three chambers in her heart, instead of four. She was a weak, sickly child but of course in those days no one knew why.

Somewhere along the line in adulthood, after she’d had her third child, her condition was finally diagnosed. In approximately 1960 she travelled from Nelson to Auckland’s Greenlane Hospital where Sir Brian Barrat-Boyes operated on her.

This very much improved her life, leaving her with just atrial fibrillation. She went on to have two more babies and lived to the decent age of 84.

Atrial fibrillation history repeats

In 1983, at the age of approximately 30, I was diagnosed with atrial fibrillation. Two cardioversion attempts didn’t result in a fix, so I was treated with warfarin and metroprolol (a beta blocker) and carried on my merry way, with an ECG and electrocardiogram every second year.

I kept fit for years playing bagpipes in a pipe band in Christchurch where my husband and I, and our three children, lived. Playing the pipes includes much marching practice, long Christmas parades, street marches, marching displays etc., so I was pretty fit.

In 1997, on losing the stamina for that very physical exercise, I became the band’s drum major. I took up more walking and still played the pipes occasionally. My intention was to be fit, active and healthy into my eighties. But nature decided to stick an oar in.

Valve problems and HCM diagnosed

Husband Geoff and I eventually moved back to live in Nelson. After my 2010 echocardiogram, it was discovered that I had a bicuspid aortic valve.

In 2017, it was noticed I had hypertrophic cardiomyopathy (HCM). Also my ascending aorta was dilating and we were told I would need surgery sooner rather than later.

On being informed that the HCM was genetic, my siblings and my children were alerted, as it was recommended they be tested. I contacted and joined the Cardiac Inherited Diseases Group (CIDG). A few months later they organised for a sample of my blood to be sent to Oxford University in England for analysis.

I was told I would receive an MRI appointment in February 2018, so we kept the month free and waited, and waited. Having heard nothing that month, I phoned the hospital and was duly given an appointment for another echocardiogram in March.

In April I was informed that my aortic valve had deteriorated and that surgery was imminent. Then it was all on with blood tests, angiograms, x-ray, ECG, dental check and CT scan.

When our son booked flights to bring our two granddaughters for a visit from Dubai, we knew the date for the operation would arrive. Sure enough! We had three grand days together and then Geoff and I flew from Nelson to Wellington for the surgery.

Our son and his family decided to come to Wellington too, leaving our house a couple of days after us. As the surgery had been postponed, our son was able to accompany his Dad to see me off for the operation on 25 July.

Aortic dissection occurs during surgery

I remember nothing about ICU. About 48 hours is now blank. My first memory is of my two granddaughters, one either side of the bed, holding my hands and presenting me with cards they had made.

My “straightforward valve replacement” (the registrar’s word) had become quite a bit more than that. While putting me on the heart bypass machine, my ascending aorta dissected, resulting in a total grafted replacement. This lengthened the surgery time from five hours to nine hours. Not such a straight forward operation after all!

Then I got pneumonia and gained 10kg of fluid in my lungs and around my heart, and my feet, legs, hands and arms were so swollen it was as if someone else’s limbs and been transplanted on to me. Geoff said I looked like the Michelin Man, and he had to butcher my slippers with his pocket knife so I could fit them.

Two or three days after surgery I discovered the gadget hanging on the pole beside me was a portable pacemaker. As my heart wasn’t working too well on its own, I needed a permanent pacemaker inserted. So my nostrils were swabbed with iodine again (for infection control measures) and I was off to get my pacemaker.

Strange heart surgery side effects

In my first week and a half after surgery I had some interesting hallucinations. In the first one, my being in hospital was some sort of conspiracy. That’s all I remember now. On being moved and put in a room with three other people, I was there to interview them to confirm the information they had provided to an author for a book was all true. Once I “accepted” my assignment, this hallucination retreated.

Two and a half weeks after surgery, I was given 15 minutes notice that the Life Flight crew were coming to fly Geoff and me back home to Nelson.

There was a flurry of activity finding Geoff as he wasn’t at the hospital at the time. Getting dressed was not an easy task when your legs are twice their normal size and I could barely move anyway. All credit to my nurse that day.

We were taken by ambulance from Wellington Hospital to the airport. I was put on a stretcher and loaded into the wee plane. Geoff was strapped into the rear seat and away we went on a brilliant flight over the Marlborough Sounds back to Nelson. My sincere thanks to the Life Flight staff – there is no way I would have managed a commercial flight.

Once in Nelson an ambulance took us to the hospital where I spent the night and half the next day. We were then asked if we would like to attempt the weekend at home. The decision was for Geoff and me to make. I didn’t have to go if we were not comfortable with it.

Getting home after heart surgery

We decided to give it a go and left the hospital with a letter that would get me straight back on the ward if for any reason we couldn’t handle me being at home.

On Monday I returned to the hospital for more rest and tests, then the hospital discharged me, and we were on our own (though back up is available if needed).

At this time my CIDG blood test results arrived from England. My HCM is not congenital. The thickened heart muscle is most likely due to the valve not working properly. Relief for my siblings and my children, though advances in DNA knowledge may show genetic links in the future.

Recovery from aortic dissection and valve surgery

Recovery has been a long slow road. For the first three weeks at home, Geoff had to do everything. Aside from cooking and cleaning and the rest of the house work, he had to undress me, shower me, dry me, dress me, help me into and out of bed, etc. etc.

My hair hadn’t been washed for five and a half weeks, so when I felt reasonably able I went to my hairdresser for a shampoo. Lovely! I continued doing that weekly until able to wash my hair myself.

It took three weeks at home to lose all the fluid from my heart, lungs, legs, feet, arms and hands.

I reached my pre-op weight then, and, because I was unable to eat much or exercise, my weight continued to drop till I had super skinny arms and legs and weighed 55kgs at my lowest.

Follow up appointment with cardiologist

After 11 weeks, I went back to Wellington for a follow-up appointment for another round of x-ray, ECG, echocardiogram and CT scan and to see my surgeon.

He was surprised and happy I was doing so well. (What was he expecting?) I was told it would take up to a year to recover fully.

Five months after surgery, just when I was thinking I would never feel well again, all that changed. On Christmas Day, quite suddenly, life was great!

All that is required now is to regain my strength and stamina, but that is gradually improving.

On the first day of 2019, I returned to our local gym equipment at Saxton Sports Field and also had a go at playing the bagpipes again.

I have, for many years, been a collector for the Heart Foundation Big Heart Appeal, and supported the fundraising by regularly buying the Heart Foundation raffle tickets. In Nelson, I joined our local Heart Help group, which has been very helpful, and I enjoy talking with others who can understand what I have been through. Now I can help support others who are going through the same surgery.

Now, six months on from my surgery, I find it hard to believe I got through all that. Onwards and upwards. As Winston Churchill said: “If you find yourself going through hell, keep going”.

 

 

Shared January 2019

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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3 Comments

  • Janet 14 April 2019

    An amazing journey. I just moved to Nelson and now diagnosed with aortic regurgitation. Would like to join a support group. I liked to keep fit and healthy but now constantly fatigued with any exercise. Could you message me the heart support group details.  Many Thanks for sharing your story.

  • Simon 9 April 2019

    Awesome person.

  • Ian 9 April 2019

    Maryse you are an inspiration to us all. God Bless you. I hope that you have a long healthy life and comfort.