Hi there I’m new here…. I live in Perth Western Australia and had Mitral Valve Prolapse …... sorry it’s a bit lengthy to read but I wanted to share my story.
In September 2018, after returning from a wonderful 5 months travelling through the UK exploring my roots, I started to have more severe heart palpations - I’d had them before we travelled but infrequently and milder and had just carried on as you do. In October 2018, after a couple of really bad episodes which really frightened me I went to see my doctor and next thing I’m seeing a cardiologist where I was diagnosed with Mitral Value Prolapse (MVP) along with potential Atrial Fibrillation (AF) which would explain the palpitations – the AF was subsequently observed and confirmed while I was having a Transoesophageal Echocardiogram (TOE) to check the severity of the MVP leakage. The diagnosis of MVP did explain several things but mainly why I’d run out of puff when I had to exert myself as, to look at me you wouldn’t know anything was wrong, but I’ve always struggled when I’ve had to push myself for example when doing strenuous hikes on our travels, going up hills and climbing church steeples. The warning here is that having never been a great fan of physical exertion I’d always put the experienced breathlessness down to a lack of fitness – not a potential symptom of heart disease!!!
Anyway, I started to do some research on my condition and too read experiences about people who are living with MVP - not so much on the medical side of things as there is plenty of information to be obtained via doctors and websites (though you do need to be careful of Dr Google) but because I wanted to get a feel of what other people like me are going through, their thoughts and concerns.
Which led me to this website, which has certainly helped me, and I thank those people who have posted their thoughts beforehand. For someone like me it has helped to give me an idea of what my new life is going to be like so I thought it only fair that I also share my journey and if my post can help one person then it’s worthwhile.
On diagnosis that my MVP was in the severe range, would need medical intervention to correct and that a review of my TOE (the echocardiogram) indicated that repair of the existing valve was very unlikely my surgeon gave me two choices of heart valves, a tissue value or a mechanical valve should a repair not be possible (whether an actual repair was possible wasn’t determinable until the actual valve was examined during the operation).
Now this is a very personal decision to make and probably not one anyone should make quickly however, as I’m in my mid 50’s and was torn on what valve to opt for pre-operation these are the decision processes I went through after discussions with both my surgeon and cardiologist…..
The tissue valve would maybe last me 10 years (possibly a bit more but maybe a bit less) and then I’d need another operation later at which point I’d be that much older and maybe my health not as good.
The mechanical value however, would hopefully give me 20-25 years, but the real biggie was then having to go onto Warfarin for the rest of my life which was something I definitely wasn’t too keen on, especially as my partner and I are keen travellers and tend to travel for months at a time when the opportunity arises – so how was that going to work while travelling?
My initial thoughts were leading me to a tissue value as my reasoning was that science is always improving things, that there might be something better down the track and I wouldn’t need to go on Warfarin for life - but that would mean another major operation and was I prepared to do that in a potentially shortish timeframe?
As I said the biggest downside for me with the mechanical value was the need to go onto Warfarin, a drug that have been around a long time and used around the world but has a bit of bad rap, however through my research I got a better understanding of tissue versus mechanical valves and how people are coping with Warfarin.
So, on the 8th January 2020, my surgeon operated on me in Perth where I underwent a minimally invasive Mitral Valve replacement operation and a Catheter Ablation to fix my AF …. Yes, in the end I decided to go with a mechanical valve which means …... yes, I’m now on Warfarin for the rest of my life.
This is a huge deal for me and one I haven’t taken likely. I did lots of research, asked a lot of questions and did a lot of soul searching. I decided on the mechanical valve mainly because I didn’t want to have another major operation down the track and because I have AF I’d potentially end up on Warfarin anyway (even though they did a fix while being operated on it may only last 5 years) and for me Warfarin is something I can work with.
Hopefully I’ve made the right choice for me – time will tell.
It’s now my sixth week post-op and I’m recovering and healing really well. I’ve had a few moments of feeling blue but in the main I’m feeling pretty good …... I’m trying to take it in my stride but of course I’m still somewhat scared knowing I’ve got this thing in me keeping me going – but that old thing time will give me confidence and once I’m handling the Warfarin side of things it should be happy days once again.
Over the last few weeks my INR levels have come up to the target range and I’ll keep a diary for a while to record what I’m eating and how it affects my levels to get a better understanding of the drug. I’m yet to start doing my own testing that should happen in a couple of weeks.
I saw my surgeon this week and he has given me the all clear to drive and go back to work – woohoo!! I also start cardiac rehabilitation next week so that will be interesting to see if I run out of puff like I use too …... who knows I might be able to climb Mt Everest once I’m all fixed hehehe!!!!
Oh my replacement value is known as a St Jude apparently the Rolls Royce of valves, so I’ve nick-named mine ‘Hey Jude” – as, been a Beatles fan, the words that came to mind were “Hey Jude Don’t Let me Down”.
Anyway, I hope this helps someone and to also know there are lots of us living with artificial heart valves that allow our lives to continue as “normal” – but hey what’s normal.
If you have any question’s I’d be more than happy to try and answer them.
Cheers and all the best.
MiniMeOz
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