The fun gift I inherited…risk!

Genes are a funny thing aren’t they. I’ve got green eyes and olive skin, yet my sister has blue eyes and fair skin…my brothers all have ginger beards, as does my son. How we look is something we just have no say in when we are born. But what goes on inside is also something we have no say in – I’m not talking about our emotions or our feelings. I’m talking about all that gooey stuff on the inside that controls how our body works – the stuff we don’t see like blood, chromosomes and even cholesterol.

IMG_3033I’ve spoken before about a heart condition I have that was diagnosed back in August, just in time for my 55th birthday. That was a fun gift, but by all accounts, it seemed I had absolutely no say in it and that the genetics involved had caught me.  This week I had confirmation of that and what I found out was not only frightening, but pretty empowering.

So what exactly was it that has made me really take notice? There’s a thing called Lipoprotein (a)…sometimes called Lipoprotein ‘little “a”’. Apparently it is a marker of what can be a genetically predetermined risk of developing coronary heart disease. I’m interested in this because I was told this week by my cardiologist that my blood tests since first discovering the 50% blockage of my left anterior descending artery show that my LDL is totally fine (that’s ‘bad’ cholesterol), my liver function is great, my blood sugar is normal and every other test under the sun shows I’m in terrific health. In other words, I am by all accounts low risk on paper…until that damn test for lipoprotein (a).

I’d never heard of this before, but my cardiologist said to go home and Google and I’d find heaps of info…I sure did! But she also explained to me what it means to have a score of 260n/Mol of lipoprotein (a). It means she can be almost certain that this is why my father had what is called a ‘widow maker’ heart attack at the age of 52, it also means my risk of developing cardiovascular disease is almost certain (and I already have it), and that sadly there is no treatment or medication to change what I inherited. There is simply no ‘nose job’ or ‘magic pill’ that will change this at the moment…though there are apparently trials currently running for a drug.

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That’s me…sitting on my big sister’s knee. This was probably about 9 years before Dad died…he was 52, I was 12 years old when he suffered a massive heart attack. Oh, and that’s our legendary dog Timmy who followed us everywhere!

 

So why does it even matter? Since I’ve found out about this, I’m kind of thinking like hell it matters…it matters BIG time! You see, raised lipoprotein (a) is something that is genetically inherited. That means my son could have it, my siblings could have and their children too. That also means that their risk of developing coronary heart disease at a young age, like I have, is super high. Okay, sure, there is nothing you can do to decrease levels, but you can take responsibility for the rest of your health to mitigate the risk factors.

I’ve been researching since I found out and I came across an amazing article that appeared in the NY Times in January of 2018 called A Heart Risk Factor Even Doctors Know Little About. I shared it with my husband and son who were pretty gobsmacked by it. I posted it on my Facebook page but I reckon very few people even read it.

It tells the story of American fitness guru Bob Harper, famous for his role on America’s Biggest Loser. At the age of 52 Bob suffered a massive heart attack, despite being seen to be super fit and super healthy and no tell-tale signs what-so-ever about any heart disease. In fact, it seemed by all accounts he had excellent health. But after his ‘event’ it was discovered he had raised levels of lipoprotein (a)…just like I do. So many people have said to me ‘Wow, you must be so fit!’ – certainly my stress test echocardiogram showed that I have a fabulous level of fitness for a woman of my age. But like Bob, I’m unlucky to be in the 5% of the population who are a ‘disaster’ for cardiovascular risk.

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Maybe cardiovascular disease wasn’t the only thing I inherited from Dad!

It wasn’t until I’d seen my GP who recommended I see a cardiologist after months of a cold not clearing up and complaining I just didn’t feel right…I can’t even pinpoint exactly what it was, but it just wasn’t right. Lucky for me my diligent team of cardiologists organised not just the stress test, which showed there seemed to be nothing wrong with my heart under pressure. But they also ordered to have what I call the ‘dye test’. Dye is injected into the veins and the heart function is watched while in a CAT scan…this is where the blockage was picked up.

After finding those results and knowing my family history of heart disease, bloods were ordered immediately and it is here where this culprit of lipoprotein (a) has been picked up. Reading the NY Times article was a bit of a revelation for me – how many times before have we heard that story of the super fit person having a heart attack. Everyone asks why it could happen…maybe they just never knew of their familial risk factors. Just like Bob, and possibly like I could have been. The likes of Bob Harper and the doctor stated in the NY Times article want to educate people about it and raise awareness.

“People don’t know about it, physicians don’t know about it, and we have to get an education program out there, but that’s expensive,” said Dr. Henry N. Ginsberg, the Irving Professor of Medicine at Columbia University and a leading expert on lp(a). “I would say that somewhere between 15 to 20 percent of the population would clearly benefit from knowing that this is their problem.”

That’s an awful lot of people who could help mitigate their risk of heart disease! Heart disease is the leading killer of Australian women, over and above cancers. Women experience the effects of heart disease differently to men and according to Her Heart Charity:

‘Heart attack symptoms in women can be different to men. 40% of women won’t experience the typical crushing chest pain and are more likely to experience non-chest pain symptoms.’

Maybe, just maybe, based on your family history, or maybe even how you’ve been feeling lately, go get that check up you’ve been putting off. Or maybe you know someone who has a history of early heart disease in their family. Share the article from the NY Times. Women are notorious for not being diligent enough about getting all those tests done that we know we should be getting –  but if you find out what I found out, knowledge is power.

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Nothing will stop me: i might not ride the hills as much anymore, and I might slow down if the heart rate rises a little too quickly, but I intend to be riding for as long as I possibly can.

NOTE: I am in no way medically qualified to talk about anything medical, I want to just raise awareness. If you think you have a risk of heart disease, or have been feeling unwell, consult your doctor! I don’t mean to be alarmist, just want to raise awareness.

NOTE 2: I’m not about to have an imminent heart attack, I’ve been given the all clear to keep riding, keep doing what I do and enjoying riding with everyone and travelling with my bike to my heart’s content!

WANT TO KNOW MORE?

 https://www.athero.org.au/fh/lipoproteina/

https://www.lipoproteinafoundation.org/

https://www.facebook.com/groups/Lpainfo/

https://herheart.org/

THANK YOU: To my cardiologists at OneHeart Cardiology, Her Heart Charity and Jean Hailes for Women’s Health…and needless to say my family who ride alongside me with all this, supporting me every step of the way.

2 thoughts on “The fun gift I inherited…risk!”

  1. Great post Tina, hats off to you for being so honest. And great information & suggestions to follow up on health concerns. I for one will treat you just the same! Keep on rolling!

  2. Thanks for sharing this Tina . It is so important we have information like this that is not mainstream. I admire your determination and have great respect for the work you do to keep women rolling . I will definitely pass this information on .
    Thankyou 🙏

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