In early 1986 I was out walking with friends when suddenly I could not breathe and my chest felt like it was being crushed. “What is going on? I’m only 25 (165cm tall and weigh 70kg). I don’t smoke or drink and I’m very active”.
After getting home, I made an appointment to see my family GP, who referred me to a cardiologist for tests – blood tests (total cholesterol, LDL, HDL, triglycerides) and an exercise ECG. The blood tests came back with total cholesterol at 12.1 and LDL in the 9’s. The exercise ECG showed heart problems associated with people 30 years older than me.
I had my first angioplasty at 25. Luckily, my cardiologist was one of Western Australia’s angioplasty pioneers and I was in good hands for the next 20 years. Between 1986 and 1999 I was having an angioplasty/stents every 18 months to 2 years. From 2000 to 2006, I was having an angioplasty/stents every 12 months. In late 2006, my cardiologist was unable to place a catheter in a narrowed artery, and it was decided that I should have a coronary artery bypass graft (CABG) operation.
During that time the battle to get my cholesterol levels under control was a major challenge for my cardiologist and GP.
I had started on a bile acid binding resin and eventually moved to statins as they became available.
My last 7 years (2000 – 2006) on statins was 160 mg per day of Lipitor. On that dose, my cholesterol numbers were superb, however the side effects were killing me (muscle and joint pain, constant tiredness/weakness, nausea, massive mood swings and memory loss) and I was still having to have regular angioplasties and stents.
After my CABG in 2006, my cardiologist grew tired of my complaining about statin side effects and switched me to fibrate based drugs. He also retired the following year.
The CABG in 2006 gave me a new lease on life, with energy levels I hadn’t experienced since my 20’s. Unfortunately, my uncontrolled cholesterol levels eventually caught up with me and I was back searching for a new cardiologist in 2011.
I was referred to the Lipid Clinic at RPH where I was finally diagnosed with FH. Up until that point, my doctors had assumed I had FH, but not confirmed it.
Questions about my family history were quite easy, as heart disease runs in my mother’s side of the family.
My maternal grandmother was one of 10 siblings and 8 of my great uncles and aunts died of heart related problems, BUT, they were all born in the 1910 – 1925 era and succumbed to heart disease a long time before the current understandings of cholesterol and heart disease were known. My mother has always had high cholesterol levels (yet her 2 older brothers have good cholesterol readings). She tolerates statins quite well and has only had 1 angioplasty about 20 years ago.
Why am I so different? No doctor has been able to give an explanation!
When I came to the Lipid Clinic at RPH, I was re-introduced to statins as a standard treatment, however the side effects that had plagued me in the early nineties returned with vengeance, until I finally convinced my doctors to take me off statins.
In April 2013 I started on a fortnightly lipoprotein apheresis program and whilst that has made a positive impact on my cholesterol levels, I am still having to have angioplasties and more stents placed in my heart.
There is now a lot of excitement about a new monoclonal antibody – PCSK9 inhibitor, which has shown some remarkable results in clinical trials for lowering cholesterol.
Maybe this is the “silver bullet” people with FH have been waiting for.