Just wanted to post for the first time on here about my experience on this new drug which I've now been on for a couple of weeks, for the treatment of HOCM. But first a bit of background.
I've had HOCM for 15 years (that I know of). I'm 44 years old. Only in the last few years have I really had any problems. I suffered what I thought was a 4 day migraine in May 2022, but when I started to get lapses in memory I checked myself into A&E and was diagnosed as having had a mild stroke. I couldn't believe it when they told me. Ended up being off work for 3 months and didn't drive for a year. Within the last 3 months I have returned to driving after DVLA tests on my eyesight.
At the start of this year (2023) I was rushing to a cardiology appointment at my local hospital (Manchester) and collapsed. The thickening of my heart muscle combined with sudden rush of activity had caused me to pass out. I woke up disorientated and had another few days in hospital whilst they carried out tests.
They determined the walls of my heart muscle had deteriorated and referred me to Liverpool General Hospital to be consulted by Prof Simon Cooper. During the appointment, different treatment options were presented, two forms of surgery and one additional option which was to wait for this new medication which had passed early stage approval for NHS usage. I opted to wait for this rather than go down the route of invasive open heart surgery or alcohol ablation.
So here we are. And I feel great after 2 weeks on this drug. I feel extremely lucky to be one of the first people in the UK to have got this medication on prescription. I am sure its going to change the lives of many, many people living with this heart condition. My symptoms have greatly reduced and whilst I don't want to take anything for granted or get carried away at still such an early stage, I am hopeful that the improvement in my symptoms will match up with my scan results when I head back to Liverpool in January for my 1 month scan. This will be followed by scans after 3, 6 and 12 months.
So, for anyone with this condition...Mavacamten is going to be a real game changer.
Here is the link to the article on the drug in the Guardian newspaper: theguardian.com/society/202...
need some reassurance please
My father and sister both died of heart disease in their 60s so do I have it too?
22 years old with Myocarditis 
Atrial Fibrillation. Help.
Today 1 year since my surgery!
