I suppose to understand and appreciate my journey with Lp(a), it makes sense to go to where it all began – before I even knew I had heart disease.

A rush to Gosford hospital in September of 2022 via ambulance. I had been coughing up blood….being an ex-smoker, I believed my number was up. The diagnosis couldn’t have been better and full of relief. Pneumonia in my right lung. I felt I had dodged a bullet. Four days later after being pumped full of oxygen and antibiotics, I was allowed home.

Fast forward a month later to my follow up appointment with the respiratory specialist. We discussed the results of recent CT scan, which showed my lung had recovered, free of disease and function was normal. However, (there always has to be a ‘but’) calcifications around my heart area were noted. The recommendation was to see a cardiologist. Was the bullet going to hit its mark after all?

Enter Dr Sarat Cheruvu from Gunalingham Cardiology. An amiable Dr, decent bedside manner with thorough explanations.

All the necessary tests were arranged, from bloodwork to an angiogram. It is probably relevant to mention here that I had been taking a low dose statin for several years due to mildly elevated cholesterol levels.

The blood results indicated my levels were still elevated. The angiogram showed atherosclerosis, diffuse in nature in all 3 coronary territories. Blockages of no greater than 50% were shown in the circumflex, the LAD and the right coronary artery. My statin dose was increased from 5mg to 20mg and combined with Ezetimibe.

In February 2023, I also started a Cardio Rehab program at Gosford Private Hospital. Apart from the physical aspect of the program, it covered topics such as diet, medication, emotions. These I had been teaching for some 13 years within the bounds of the Better Health Self-Management Program formerly run by the Central Coast Local Health District. It was aimed at helping patients with chronic health conditions to better manage symptoms and overall quality of life. A good reminder to practice what I preach! I will mention here I am an avid reader of food labels, the importance of educating people on this I think was summed up by another patient who said ‘the food companies are trying to kill us!’. Overall, it was a fantastic program not just because of the content but by being with others with a similar condition and being made accountable for the next steps and goals you took.

During this time, I experienced challenges with the increased statin dose. I was experiencing pain in both my hips. It was unrelenting and debilitating. No sign of osteoarthritis. I was given a diagnosis of acute severe tendinopathy, to the point of a tear in my glute tendons. Lots of physio, pain killers and cortisone later I had little improvement. Just losing sleep and miserable. The tendon was surgically repaired and to this day is still recovering. I started researching the particular statin I was taking and learned that a side effect could be tendon injury. This was later confirmed with the pharmaceutical company producing the medication.

With the permission of my cardiologist, I came off of that statin. Within 10 days I had felt better; but the downside was that my cholesterol was creeping up again. In fact, for the 6 months (as recommended by my cardiologist) following cessation of the statins, my levels rose from 4.8 to 7.0.

But luck was on my side. In April 2024 LEQVIO came on the market and the PBS. This is a 6 monthly injection to combat high cholesterol. It was duly prescribed by Dr. Cheruvu. and to date it appears to be doing its job with no apparent side effects.

My knowledge about Lp(a) began in August 2024. On a visit, Dr. Cheruvu explained Lp(a) to me, its role in heart disease and the hereditary factor, and referred me for testing. The results showed my levels were more than 4 times greater than what they should be. Dr. Cheruvu concluded that it explained the nature of my heart disease and that he hadn’t seen such extensive disease in someone as young as me before. So am I a ticking time bomb? Especially given there currently is no treatment. I am advised that my cholesterol levels would have to come down further and the way to do this was an aggressive change in lifestyle. I was overweight by about 20kg. It had been slowly piling on since the problems with my hips and surgery. I was on crutches for 5 months. A hysterectomy snuck in there too, meaning 6 weeks of doing not much. I hit rock bottom and didn’t know quite the way out at this stage.

Funnily enough, my health fund contacted me for my annual health check. They decided I was eligible to join their weight loss and physio program as I have osteoarthritis in my knee. I was provided access to a dietitian and a physiotherapist for 12 months together with meal replacements and some wonderful cookbooks. It was just what I needed to take those steps to get into shape and address my heart health. I embraced the offerings and soon the results were showing. I lost 10 kg in the first 12 weeks. I’ll add here that a motivator was a planned trip to Bali where I spent a glorious 10 days with 60 other people I had never meet before to play the Djembe -an African drum. This is my 3rd year of drumming. It’s good for my soul and a great cardio workout! To date I have lost 19kg which I have been maintaining with a better diet (having weaned off the diet products), am back to walking my dog every day (something I missed terribly) and generally much happier within myself.

But what about my cholesterol levels? I’m happy to say that I am so close to hitting the lower targets recommended for those at high risk of a cardiac event.

Given the hereditary nature of elevated Lp(a) levels, I advised my family members to get tested. My youngest son aged 33 has 2.5 times the safe baseline and is under the care of my cardiologist. My sister was denied a test by her GP. The reason – because she does not have diagnosed heart disease or had a cardiac event. Holy cow! The guidelines are clear in that if a close family member is diagnosed, then you should be tested. In fact, even if that is not the case, a Dr should not deny your right as a patient to refer you for a test as it can be privately paid. My partner’s GP was more than willing after he told his GP about me.

It was because of my sister’s experience together with my nature to educate myself on my health that I took time to see what information I could find about Lp(a). I found a wealth of articles, interviews, medical papers both from Australia and globally.

What became apparent was how far behind we are in Australia in regard to Lp(a) awareness, testing and management. The cardiologists and researchers are crying out for the government to have the blood test bulk billed so it can be accessible to everyone and to be included as part of the Heart Health Check (HHC). It really started to make my blood boil! In March 2025, with a bee in my bonnet, I decided to write to Dr Gordon Reid MP, Member for Robertson NSW for a call to action on the following:

• Free access to testing (especially as Dr Reid promotes bulk billing)
• Education of GPs and wider community as a whole
• Lp(a) to be included in the Heart Health Check

Imagine my surprise when I received a response and a thank you. “I very much applaud you for your advocacy to ensure better health outcomes for the broader community. I am writing to confirm that I have made representation on your behalf to the HON. Mark Butler MP, Minister for Health and Aged Care….and his department to review your correspondence and take appropriate action”. I had a politician on my side!

Unfortunately, the response from the Health Minister’s office was not as favourable. Merely pointing out that there had been no submission for Lp(a) testing since 2022 to the Medical Services Advisory Committee. Perhaps the Health Minister should have been looking at the research which proves that Lp(a) is an independent risk factor in CVD and asking why we do not have systems in place here in Australia to prevent rather than just treat.

That bee was still buzzing. A second response merely outlined and referenced the current guidelines, which do not reflect current research and data.

It was at this time that I found the release of the Brussels Declaration for Lp(a) Testing and Management, brought about by the Brussels Summit earlier in 2025. The Declaration was mirroring the requests I had appealed to Dr Reid. I obviously signed the Declaration and that was when I had a glance at other Australians who had signed it – Jenny Della-Vedova, Chair at FH Australia. I made contact and became a Friend of FH Australia. Following correspondence and several meetings, I will hopefully be inducted as an Ambassador for FH Australia at either a State or regional level in 2026. It was also through FH Australia that I found the Global Heart Hub. They are an alliance of heart patient organisations and individuals and advocates aiming to create a unified voice for those living with heart disease. I am now an affiliate member.

With the Brussels Declaration documentation in hand (Produced by FH Europe) I meet Dr Reid in person in late 2025. He listened and acknowledged how important all of this is.

He asked if I would present this information in Canberra as an Ambassador for FH Australia. The answer is yes and it is something Jenny, Christine (Deputy Chair) and I are working towards in 2026.

A more recent submission to have the test for Lp(a) levels bulk billed has been yet again denied. The reason appears to be because there is no current treatment. The fact is we are on the cusp of effective treatment We (Australia) need to be system ready. To date I believe testing rates are something like 1-2%. Without awareness and education, this will not change and we will have treatment but no patients to give it to because they haven’t been tested and identified. And there are steps patients who are diagnosed can take, like I have, to improve their health, reduce their risk and become involved in advocating to government to make these changes.

My previous role as a health educator helps drive me. I can see the gaps and I feel so frustrated. I try and keep up with what is happening globally. Countries like India, Germany and other EU countries have routine testing. In closing, I would like to express my gratitude for the support of my partner of 12 years who has been with me from the beginning of my journey, listening to me rant and rave, celebrating with me any wins. And all my drumming buddies who have listened to what I have to say about Lp(a). On that note, I will mention that a fellow drummer has had his cardiologist scratching his head. I gave him some information on Lp(a). He got tested….his levels are through the roof and help explain his current heart condition.

It’s a journey. A passion. It’s more than personal. I will keep going to raise awareness and hopefully
Australia will catch up with the rest of the world!

An Lp(a) patient experience video about Chris can be viewed here:

Long version (6′ 11”)

Short version (2′ 24″)