On this month, 10 years ago, my life changed forever. On the very day I brought my beautiful baby daughter home from the hospital, I suffered a condition called SCAD, where a tear occurred in one of my coronary arteries, causing a heart attack. I was 38 years old.
A trip to A+E, a medical misdiagnosis (a ‘virus’ being suggested as the cause for my chest pain, sweating, weakness, and raised troponin etc), led to discharge and two further heart attacks at home, one on the couch, the other on my bathroom floor. More misdiagnosis followed and finally a cardiac arrest that required two rounds of resuscitation, by the end of which I was hanging onto life by a thread.
The upshot was an emergency ambulance trip to another hospital, an emergency angiogram, finally, a diagnosis of SCAD, but a discovery that my artery was 99% blocked from the torn artery wall flapping into the same artery’s blood flow, hence the heart attacks. I had to have open heart surgery I was told. There was “no choice” and no time to waste. Finally, close to midnight on the 11th April 2012, an emergency Coronary Artery Bypass Graft (a CABG as the medics call it) was performed.
But even after the CABG, there were new problems. While the veins from my legs inserted into my heart allowed normal blood flow resume, my heart muscle’s ability to pump the blood around my body was gone down to 10%. The delayed diagnosis had allowed the tear in my artery get bigger and bigger, meaning bigger flapping artery wall and more blood flow blockages i.e. heart attacks, each one depriving my heart muscle of the vital oxygen it needed to stay alive, such that, the surgeon added, some of my heart muscle was “dead”. My mind instantly flashed to my 3 kids and the thoughts that they may grow up without a mother.
10 years on, I’m still here. I have worked hard to be here and learned much along the way. I share the following to give insight to what comes after diagnosis for newly diagnosed patients, their families and for the medical profession, so that all are aware of the patient journey and what can help along the way…
- If you must Google your diagnosis or problem, only click onto reputable site links (charities or journals, usually reliable) and NOT the first ones that pop up on the list, as algorithms are often set to present the most alarming cases by way of promoting reader engagement, rather than the most likely result.
- In my experience medical professionals are made up of two types…. the ones that are good for you i.e. skilled, up to date, open to new information, patient focused, empowering, respectful, good communicators and the ones who are not i.e. dismissive, authoritarian, admonishing, egotistical, poor communicators. Studies show that our medical care givers and environments can affect our wellbeing, so my advice is, if you are misfortunate enough to come across those that make you feel worse by how they behave, or find that you ‘dread’ appointments with them, explore other options for as long as it takes until you find the one that gives you good vibes. This may involve having to travel further or pay more, but you are worth it….
- The patient journey, or in fact any tough journey in life, can be a lonely, frightening, despairing one, so find people on the same journey as you as soon as you can. Private online support groups are available for every issue these days. The validation, sharing and support from other people in the group will be a vital sanctuary on the bad days… (a previous article I published on this topic might be helpful, see ‘Click and Connect’ feature link for more)
- The quiet patient can often be the forgotten one, so use your voice to advocate for yourself and if you are too sick to do so, have some family, friend, care-giver who can use their voice to advocate for you. Patient Advocacy is a vital part of the patient journey
- Medication is not the enemy… yes that in itself is a bitter pill for some to swallow, but if there’s a big chance you’ll die if you discontinue, or your quality of life will deteriorate, then it is healthier to appreciate it than see it as the enemy.
- Whatever the body part that has been through the wars, the head will follow… and mental health will need attention too, so you might as well plan how to heal that too rather than wait for it to collapse… I’d recommend talking it out, writing, counselling, or finding whatever floats your boat but do something to support it. A previous article I wrote on this might help too… see ‘Psychological impact’ feature link for more…
- Recovery is a slow process and needs patience, time and an appreciation for baby steps. It’s also not a straight trajectory upward, but more like trying to surf.. some days you’ll soar, others you’ll crash, both physically and/or emotionally.
- People… sometimes the family and friends you expected to be there are nowhere to be seen in your hour of need. Equally sometimes the people you hardly knew turn out to be the most generous to you in your troubles. Also some of those close to you might seem overzealous in looking out for you because they are terrified at the idea of losing you. They may irritate you but know you are lucky if you have them in your life.
- Your illness affects others, no point pretending otherwise. They too might need help and support, but in any event it is not something you can feel guilty about, because let’s face it, your illness was not a deliberate action… As a PS to this one, don’t think that all the effects are ill effects, in fact often illness can give way to positive opportunities for others too, even if you are a parent… kids are learning resilience every day you continue to get out of bed in spite of life’s adversity… they might also learn to empty and fill the dishwasher which is a necessary life skill… (two articles I wrote one on parental guilt re; illness and one on parental juggling with diagnosis, might help… see links…
- If you have a faith, use it and if you don’t maybe explore it… as it can really help with acceptance, hope and so much more.
- Life is medicine, or at least it can be… relationships, experiences, work, friendships, love, pets, nature, food, exercise, can all make us feel better physically, emotionally and psychologically. But likewise, if there are things in life causing you to feel worse, your wellbeing may require some things to change… (this article might be helpful to you in relation to this topic https://thehealingoflife.com/2021/06/09/i-now-know-that-life-is-medicine/)
- There is no real ‘back to normal’, because not only might life have changed physically, but the experience will change you mentally, spiritually and in so many other ways too. But that isn’t always for the worst. In fact, down the line there can be green shoots even from the darkest days.
- Don’t think you won’t have other challenging life events just because you’ve has this one.
- Helping another – when some time has elapsed in your own recovery, it can often be very healing to help the next person entering the pit, not just for them, but for you too… see feature Healing through Helping, link here https://thehealingoflife.com/2021/07/23/healing-through-helping/
- Replace ‘why me?’ with ‘what now’? so that you can go forward in life, rather than stay looking in the rear-view mirror, which will just show you the scene of the crash that has just happened in your life, and will thus only ever leave you feeling bad.
- Focus on the positive as much as you can, positive scenarios, things to look forward to, but don’t deny the negative feelings along the way, express, clear out, and know that a good cry can sometimes be the best medicine!
The above are just some of my suggestions based on my experience and opinions of same. They may not tally with your situation, or you may have different opinions, and that’s OK. Feel free to share any other tips you may have in the comments section of whatever platform you are using to read this blog,
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10 thoughts on “10 YEARS on from a SCAD & HEART FAILURE diagnosis … here are some of the things I’ve learned…”
You learned valuable lessons – and I’m so glad you’re here to tell the tale! How alarming about the misdiagnoses. Thank goodness you got the needed help. You are strong in body and mind, that much is clear from reading this post xx
So glad you are able to be with your loved ones. Your advice is sound. Dr. Google is not the answer. All the best, Muriel
Oh my goodness–what a journey you’ve endured, Pauline! Your wise advice will no doubt help others on similar journeys. I’m glad you mentioned the importance of faith. Even secular research has proven that people of faith fare better through trauma than those who have no faith. I suppose there are those who’d say it’s all about positive thinking. But millions of Christians can attest: God DOES make his presence felt, offering comfort and strength (Psalm 9:9-10), God DOES help us through difficult times (Psalm 46:1) and God DOES bring good out of the worst circumstances (Romans 8:28).
These are beautiful and wise lessons, thank you for sharing them with us!
Pauline, there are some major points that we share regarding our heart attacks. I am forty years or so older than you, but at seven-nine I was not a willing participant in my “death.” 😀 I’m so thankful that God’s purpose was to keep me alive through miraculous circumstances.
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O I so get that Oneta!! Glad you’re here ❤️💚💖
well done for the post
I read your post with interest Pauline and find it contains interesting and valuable information. Thank you for your generous sharing of your story and your thoughts. Kind regards, Agnes
Thank you gaiainaction I’m glad it was a helpful read 😊
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