Scott's story

My blood fat condition is like living on shifting sand

''My grandad and my dad both had heart attacks and my dad died prematurely at age 66. It didn’t occur to us that we had an inherited blood fat condition in the family.

My first heart instance was when I was 40. I was working long hours in a stressful job and one day, I was unusually breathless walking up a hill. My doctor referred me for tests and I was given medication for angina. Seven years later, I had my first heart attack and had three stents fitted, including in my left artery.

Six years later in 2021, I had chest pains and called 999. The paramedic was unsure why, but sent me to hospital, where it was confirmed I was having another heart attack. I had four more stents fitted, including my right artery, and the nearly total blockage in my coronary artery was unblocked.

All was fine. I was alive. I recovered and focused on cardiac rehabilitation. However, all the while I kept asking myself ‘Why me?’. It didn’t make sense. I was not overweight, I eat reasonably healthily, drank in moderation, I didn’t smoke and my total cholesterol was low at 3 mmol/L (although my ratio was high). Yet I had life threatening heart disease. I needed answers.

In 2022, I paid to see a specialist in metabolic medicine at Frimley Hospital who tested me for FH which was negative. He then suggested that I should be tested for lipoprotein(a) or Lp(a) for short. I’d never heard of it before. It’s a particle that carries cholesterol in the blood, thickening your arteries and accelerating atherosclerosis. My blood test results came back as high at 2377 mg/L. This showed that I had a significantly increased risk of heart disease, stroke and other cardiovascular conditions. My doctor explained that they couldn’t do anything for me, but the rest of the family should get tested and I should continue to take statins (or if intolerant to statins, then injections).

Mentally it’s a real struggle to live with this condition. The psychological impact is enormous. It’s hard to explain the sense of isolation and bewilderment I felt having to always weigh up what I could or should do or not do to reduce my risk, improve my physical health and worst of all manage my anxiety. I was living on shifting sand, unstable ground. I didn’t know from day to day what my future would be, and it impacted greatly on me, my wife and my children.

I am in a better place now. CBT counselling has helped me to change my negative thinking. I do yoga, breathing exercises and mindfulness and I take a light dose of medication to reduce my anxiety.

Being informed has been essential for me on my patient journey. HEART UK’s information has been invaluable to me as I’ve researched my many questions. But I also recognise that Lp(a) is an emerging condition and the answers aren’t all known yet. Further research is so important.

Some questions will be at the back of my mind, such as what standards of care should I expect, how often should I have a review, when should my younger children be tested, etc. But I don’t let Lp(a) stop me from doing things and in some ways, we do more now than before as we know how precious life is. I control what I can and manage what I can’t control.

I’m doing what I can to spread the word about LP(a) by sharing my story and participating in research studies. It’s wonderful to know that HEART UK are in the Lp(a) Task force which advocates for UK lipid guidance to recommend Lp(a) measurement in enhanced lipid profiling so that more people like me are identified early''.

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