Young women with heart disease are often overlooked, says Sheilagh Foley
When I found out I had an appointment with the ‘Heart Failure Clinic’ at the age of 41 I was less than optimistic. Failure? Seriously? I was curious what other clinic names were in the mix before they settled on ‘Failure’ – ‘The Jesus, Mary and Joseph Clinic’? ‘The Yerra Good Luck Clinic’? or perhaps ‘The Janniemac Institute of Wellness’? In fairness to my local hospital they did some rebranding and now go by the more hug friendly ‘Heart Support Unit’.
Names and labels aside these clinics around the country keep people alive through education, support and good old fashioned virtual hand holding. If any of your organs are failing it’s an unpleasant experience all round but when it’s your heart it takes on a personal edge.
One of the first things you learn to draw as a kid is a heart. Then you are told to grow it, and use it, and give it away, and take someone else’s (but don’t’ break it!). Your heart is a lot more than a muscle in your chest that pumps blood around your body. When it starts to fail the very essence of who you are goes with it.
But there is hope! It comes in the form of support.
Educate yourself – If you thought Heart Failure was just something that happened five minutes before a elderly man with his own oxygen tank expired, you might be surprised to learn: 1 in 5 Irish people will develop Heart Failure, at least 7,000 Irish people under the age of 65 are currently living with Heart Failure, and the most startling fact of all – approximately 5,000 Irish women die every year from Cardiovascular Disease, that’s an average of a woman dying every two hours. We can change this – eat smart, move more, get checked.
See us, help us, save us – Young women with heart conditions are often overlooked, we are the forgotten patient cohort. People can often assume because we look Ok, we are Ok, because we are young we will bounce back, because we are female ‘we got this’. But at the end of the day we’re just that kid, with the waxy crayon, scratching out a heart on our copy book, except this time the ‘drawing’ is an Echocardiogram and we’ve just found out we have a life limiting disease. As a woman, learn the symptoms of a heart attack, they are more subtle than in a man – common symptoms of a heart attack in women include nausea, fatigue, pain in the jaw, shortness of breath and pain in the back.
Be your own advocate – I had open heart surgery last year and I was fortunate the procedure went smoothly but the level of pain I endured afterwards was of a ferocity I didn’t foresee.
During my postoperative ventilation, I couldn’t swallow, move, talk or breathe, the ventilator was breathing for me. I attempted to communicate to my nurse that I was in a lot of pain. I was in ICU isolation, just me and my nurse buddy. I think I caught her on a bad day.
She sat at the end of my bed for 12 hours like a fed up Florence Nightingale. I’m not sure of the ergo dynamics of the room but everytime she stood up, she banged into my bed. I’m sure she had no idea the bed bumping was agony for me, if I could, I would have paid a million dollars there and then to have her stay in the Four Seasons for the night, where she could bump beds with the best of them.
I made the fatal error of tapping the side to get her attention. I couldn’t speak and I didn’t know what plane of existence I was on, let alone where the nurse call-button was. Florence was not impressed, she was standing over me at the time, holding my file. Flo dropped the file on top of me. I couldn’t cry out because of the bloody ventilator, however, I could feel the tears running down my face. I was glad when the shift changed and the night nurse arrived.
Different nurses minded me over my 4 days in ICU dutifully lashing the endless rounds of blood transfusions into me. The vast majority of nurses were extremely kind and patient, and I do appreciate that job is unbelievably demanding and not everyone can do it… not looking at you, Flo.
A lot of people’s heart surgery stories are ones of little pain, little fuss, no big deal, one day in ICU, and they feel wonderful shortly afterwards. I’ve heard different theories as to why this is so – a person may have been very unwell for years so the operation is a fix that immediately improves their health, an older person may have more fat and less muscle so the operation itself is physically less traumatic, older people are tougher, etc, who knows. Some people have no real pain, I was lost in it.
I thought I would be given a morphine pump or opioids after the surgery, as was the case with my prior operations. Instead I was repeatedly offered paracetamol. Essentially somebody took a chainsaw to my chest and then gave me a Lemsip afterwards. I fully understand opioid addiction, but there is a time and a place for prescribed narcotics and it’s called major surgery.
Next time I have an operation I am having a pre-op conversation about my pain management plan (and I am possibly stashing a bottle of whiskey in the ICU).
All my challenges aside, I am grateful to be alive. I am extremely lucky to receive wonderful support from family and friends. I will always be eternally appreciative and I try to pay it forward. You don’t have to wait until somebody is at death’s door or down on their luck to step up, even a compliment or 10 minutes of your time can carry a person through a difficult day.
If you are a heart patient or a loved one and you can’t find the support you need close to home, reach out to the Irish Heart Foundation. They have a range of resources including online and telephone support from nurses, fellow patients and IHF reps.
They are incredibly warm and kind people who put patients first, if an Irish Mammy was an organisation she would be the Irish Heart Foundation. I am grateful to be part of their Patient Panel.
Not to sound like a self-help podcast, but I honestly believe your best support starts from within.
For my last night in the hospital after my surgery I was moved to a private room and had an absolute sweetheart of a nurse, you could tell she was genuinely concerned about her patients. She listened to my grumblings about my pain, she sorted me out with something that made it all disappear, if only for one night.
I heard the kind nurse talking to the woman in the room next to me. The woman said she was afraid. The nurse was so gentle and reassuring to the older lady. The lady said in a quiet voice “I am very brave”, the nurse responded “Yes.you.are – Be brave”.
I found this incredibly moving, tears welled up in my own eyes and I said to my empty room “Be brave”.
Young women with heart disease are often overlooked, you are not in this alone, find support within the Irish Heart Foundation, proud sponsors of the Janniemac Institute of Wellness.
The Irish Heart Foundation can be contacted at: www.irishheart.ie
Sheilagh Foley’s website: https://www.lettersfrombeyondthepale.com/