The long road to diagnosis (Part 1)
So the Sword of Damocles hung over me as a young woman in her 20’s, and was still hanging as I approached my 40’s. I was convinced I wouldn’t live longer than my dad, which was very stressful with a 10 year old, a 6 year old and new born baby. I started to talk to my mum, we talked more about my dad than we had ever done – not least because previously I was so traumatised I wouldn’t acknowledge his death or talk about him until I was in my mid 20’s.
Every twinge in my chest was the impending heart attack it was very, very scary.
My mum suggested I visited the doctor…I didn’t want to make a fuss…neither did your dad she said …just go. So on 24 March 1999 (20 YEARS ago) aged 42 I had my first cardiology appointment. I had an ECG and short consultation and the diagnosis was “nothing wrong”.
Unbeknown to me around this time my cousin Lesley ( daughter of Aunty Dorothy) and 5 years older than me was pushing like mad for further tests as she was having discomfort in her shoulder particularly, as a biologist she was thought the family history was worrying but no doctors would take her seriously as she was a fit (played hockey 3 times a week) and healthy non smoker with normal cholesterol and “not the profile”. She had ECG’s and “tests” and was declared OK, she pushed for an angiogram…
She eventually “won” the battle and had said angiogram. The angiogram showed serious blockages and she was scheduled for a quadruple heart bypass asap. She called me – I cried – it just wasn’t fair…how could a family have so much pain….
I am so, so glad she “listened” to her body and instincts. Aged 48 – the same age her mum had her fatal heart attack – Lesley went to theatre for the open heart surgery that was to become all too familiar.
August 2001 I was back to the GP…I was now terrified, my 3 older cousins had now either had a heart attack or a bypass ( Robert had a heart attack, Lesley a quadruple by pass and Eric a triple bypass) …the new cardiologist requested an Exercise and Rest Myocardial Study…it was reported that I had pain under my left armpit and throat tightness during the study..but I was fit, healthy, didn’t have high cholesterol and “wasn’t the profile” so nothing to be concerned about…
On 7th January 2004 my mum died and my heart broke a little bit more 🙁 Not a heart attack but a dissecting Aorta.
On 13 August 2004 I presented at MRI (Manchester Royal Infirmary) with chest pains, I spent 4 days in hospital and was discharged with a GTN spray and statins. I was called back for a heart scan and have a letter dated January 2005 saying “no evidence of heart disease”. Despite my requests for an angiogram, given that both Lesley and Eric were only diagnosed after an angiogram, no one would agree to me having one.
I was back and to to hospital I had lots of discomfort in my chest, I couldn’t climb a hill without getting out of breath but could dance all night. In 2007 I was diagnosed with a reflux problem and had stomach surgery, which seemed to be the cause of my chest discomfort. I stopped being sick – I indeed had a faulty stomach valve – but I still had shoulder discomfort, something I put down to sitting too long at a computer.
In January 2016 my cousin aged 48, 10 years younger than me, had a heart attack …in the gym…she too had been questioning her heart health…but she was fit, healthy, non smoking female and “not the profile”. She was blue lighted to hospital and a stent was fitted in her LAD…
I returned again to the cardiologist who after perfunctory testing told me there was nothing wrong with my heart and to stop worrying. The cardiologist wrote to my GP in July 2016 saying everything was “entirely normal”.
That summer I went to Orlando on a “girly trip” and I now know the intense discomfort that woke me on the return flight and the high heart rate ( I had my Apple watch by now) at 30 000 feet as well as my breathlessness in random situations (mainly climbing any incline) and the numbness in my face and left arm were linked to my heart…and I thank any superior being that I survived to tell this story….
To be continued…!!