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A diagnosis of discovery: the challenges of living with mitral valve prolapse (MVP)

February 12th, 2018 by Joe Lofts

I’ve got an admission to make. I have a condition called mitral valve prolapse, or MVP for short. 

This basically means my mitral valve - located between the left atrium and left ventricle of my heart - is leaky (prolapsing), and that the blood flows the wrong way.

Now that’s sorted, I have a confession: despite being diagnosed nearly two years ago, I still know next to nothing about a condition that affects many areas of my life.

Chances are you’ve never heard of MVP. Before my diagnosis, neither had I. As such, this little ‘heart-to-heart’ will document my ongoing journey of discovery and hopefully raise awareness of this widely misunderstood and largely unknown condition.

Strange symptoms, stranger reactions

Echo-Berlin-Steps-2012

As a much younger but much more worrisome man

I can’t remember exactly when the symptoms started, but I’ve always felt a deep-seated anxiety for as long as I can remember. The kind of anxiety that rules your entire body, even if your mind is calm. And I’ve always got tired really quickly, even if I haven’t helped myself by being a bit of an insomniac from the age of about 14 onwards.

On top of all this, I was suffering regular heart palpitations, shortness of breath, dizziness and random pains around my body. I’d gradually developed these symptoms from my late teens (I’m 26 now), and some of them can be particularly scary. From getting a headrush when standing up to completely losing my balance for no discernible reason, these strange signals from my body ensured I became a regular visitor to various GP surgeries throughout my early twenties.

A regular visitor without disclosure, however. The GPs couldn’t find a cause for the symptoms, with some even going as far as suggesting it was “all in my head” and then referring me to talking therapy sessions. Sporadic counselling helped me cope for a short while, but the physical symptoms were still there.

For those of you who have suffered from chronic fatigue syndrome (also known as ME), chronic pain or any mental health condition, you’ll appreciate how discouraging and regressive this sort of news can be. For years I’d been told by some of my friends and colleagues that I was a “massive hypochondriac” and “a bit of a whinger”, but the fact of the matter is that my body just couldn’t keep up half the time.

With a predisposition for being anxious, a childhood shyness that I’d still not fully escaped from and the continued effects of the body dysmorphia that I’d partially developed as a teenager, I started to believe that these symptoms were indeed “all in my head”. And for a couple of years, I stayed away from the doctor altogether.

 I started to believe the symptoms were indeed "all in my head" 

As I grew into adulthood I learned to be open and candid about having anxiety (though not taking any form of medication) and the occasional bout of depression. As an advocate of progressive and open dialogue for mental health, I was (and am) completely happy to discuss my battles with mental health problems. If anything, I was proud to talk about them.

But when it came to those phantom physical symptoms, I felt ashamed. I would either persist through the day in agony and put all my effort into pretending everything was OK, or I would simply withdraw from certain social gatherings. It even got to a point where I’d spend half a shift at work in the midst of a prolonged panic attack, and outwardly no one would even realise.

Believing that my mental health was distorting how I viewed my physical health, I actively tried to ignore certain physical symptoms.

Somehow, I just about kept a routine and retained a semblance of normality. However, my symptoms just weren’t going away.


The diagnosis

Joe-Skimming-Stones-At-Loch-Lomond

My MVP was discovered completely by chance. Towards the end of my stay in the south London flat I was living in, mould had started to grow across my bedroom wall. I developed a nasty mid-winter cough and some severe chest pains.

All of this was happening in what was arguably the toughest year of my life. I had been through a tough breakup that left me on the brink of a nervous breakdown, and my beloved grandma was diagnosed with terminal cancer and passed away shortly thereafter. Meanwhile, I was precariously balancing being a manager in a busy pub with trying to complete my Master’s degree.

What’s more, my girlfriend was based in Australia, and I was essentially living off the goodwill (and sofas) of friends, who kindly hosted me after my tenancy contract expired and the bedroom became unliveable. To say I had a lot on my plate would be an understatement.

As the cough persisted, I decided to go to the GP in January of 2016 - fully expecting there to be a problem with my lungs. I was, after all, coughing my guts up and had been breathing in some of the unhealthiest air in London (probably).

As expected, he told me I had a chest infection and I was put on a routine course of antibiotics. When he checked my heartbeat, he told me I had a heart murmur.

In all honesty, I had no idea what this meant or whether it could be a problem. Weirdly, I’d always had something of an intuitive fear about my heart’s health, and it always used to freak me out when I could really hear or feel my pulse. Similarly, hearing about people who had suffered heart attacks used to terrify me. This peculiar feeling lasted throughout my childhood - in hindsight, perhaps my body was trying to tell me something unconsciously?

Perhaps my body was trying to tell me something unconsciously?

Despite the uncertainty and my lifelong tendency for being a bit of a worrier, I didn’t really have time to dwell on it too much at that moment - I was so busy with work, university, managing a very long-distance relationship and testing the hospitality of my friends to its limits (cheers for having me for those 3 or 4 months guys!). To follow up on the discovery of the murmur, my GP referred me to have an NHS echocardiogram (or echo).

My echo took place in June of that year at St Thomas' Hospital. My girlfriend had come over from Sydney to visit for a few weeks, and I was about to move back there with her to embark on a new life Down Under. We went to the hospital together and the echo was simple enough, despite the images of my beating heart being slightly unnerving (as I said before, heart stuff makes me a little queasy).

After the scan, the nurse told me in an almost reassuring voice that I have mitral valve prolapse. She went on to explain with helpful hand gestures that my valves were not coming together as they should - one of them was buckling - and that the blood that passes through there was regurgitating on a mild to moderate level.

I was told there was nothing to worry about immediately, but that I’d need to have a checkup every six months to a year. And that was that: I had mitral valve prolapse.

Echo-NHS-Healthcare-Echocardiogram-Ultrasound-Scan

The Doppler ultrasound scan used in an echocardiogram


Responding to the diagnosis

Despite the bad news - I had been diagnosed with a heart condition after all - my initial reaction was actually one of relief. Why? Well, at long last I had something I could pin those strange phantom symptoms on. Also, I felt validated that it wasn’t “all in my head”. I could finally reassure myself that I’m not crazy and that my symptoms are caused by a physical abnormality. After years of suffering, it felt like an epiphany.

After years of suffering, it felt like an epiphany

Still, I didn’t really have time to process the news. My girlfriend and I were on a whistle-stop tour of London as we said our goodbyes to friends before we flew to Australia less than 10 days after my diagnosis, and the last thing I wanted to do was kick up a fuss about something I had no clue about.

As we settled in Australia I read things about MVP here and there but didn’t really fully engage with my condition. The symptoms continued to be sporadically debilitating (perhaps the Aussie heat played a part), but I just put the diagnosis to the back of my mind and distracted myself with other things.

I carried on drinking most nights of the week, I continued to smoke a couple of packs of cigarettes a week and kept on being something of a caffeine fiend. As I have since found out, these three things - alcohol, cigarettes, and caffeine - are strongly discouraged for people with MVP. Whoops.

So why didn’t I take responsibility for what is essentially a long-term illness?

Perhaps it’s a lifelong fear of heart attacks and a subsequent denial of my heart problems? This must have definitely contributed. But I think the most significant cause for feeling indifferent was that I just couldn’t find decent resources about MVP.


Learning about MVP

Echo-NHS-MVP-Colourful-Logo

I’d read lots of conflicting information about the condition. Some that say sufferers are at high risk of cardiac arrest; others that say they’ll live a long, healthy life and have nothing to worry about.

It’s easy to find reliable resources for the symptoms and causes of MVP on the internet. However, finding trustworthy, corroborating sources on treatment or how to cope with the condition on a day-to-day basis proves to be a frustrating experience. Even searching for books on the condition yields very few results, and most of these were published nearly two decades ago. Without the tools to call upon, I felt alone.

After moving back to the UK last year, I decided that I needed to properly face up to the fact I have a long-term heart condition.

As part of my quest to learn more about living with MVP, my first step was to find other people like me. I joined a private Facebook group consisting of fellow MVP sufferers, and it instantly became clear that I’m not the only one to be worried, confused and desperately searching for answers.

Commonly-posed questions on the group’s page included:

I know what you’re thinking: these questions are a bit morbid, aren’t they? This may be the case, but it’s worth asking yourself the following: if you’d been diagnosed with a clinical-sounding heart condition after years of experiencing symptoms that can often be terrifying, how would you respond?

I asked the members of the group to summarise what having MVP means for them and instantly received some interesting responses. Though not everyone who responded experiences full-blown symptoms, those who do seem to place emphasis on fatigue, shortness of breath, palpitations, dizziness, and anxiety.

Some members, such as Libby, echoed my sentiments about feeling relief after diagnosis: “for me, finding out that I have MVP and realising that the symptoms that bother me are a result of the MVP has actually made me feel less stressed than I was before because I know there’s a reason for it.”

Another member, Martin, also expressed his frustration over having previously undiagnosed symptoms: “I would tell my family about my symptoms and everyone put it down to me being over dramatic… I’ve found it frustrating dealing with family and doctors as nobody really takes you seriously, but I think it’s down to lack of knowledge and understanding.”

In the past, if I told someone about the symptoms I was experiencing, I would invariably get similar reactions to Martin. Time and time again, the “hypochondriac” tag would stick, and people would think I was overreacting. Nowadays, if I tell someone I have a heart valve issue, I’m immediately met with concerned responses.

I believe these two disparate responses to the same condition indicate a general lack of understanding: about heart conditions in general but also about mental health problems and chronic pain conditions. As such, I’ve recently made big strides to educate myself on MVP so that I can, in turn, promote greater awareness of the condition among sufferers and non-sufferers alike.


Finding support for MVP and owning up to the diagnosis

Joe-And-Girlfriend-In-Australia

You can probably tell that I’m far from an expert on my condition. This is steadily changing though. I barely smoke anymore, have moved on to decaf coffee and have cut down my alcohol intake significantly. And through engagement with my cardiologist and online support networks, I’ve been able to gradually discover more about the condition and more about myself.

As with many long-term conditions, getting a good support structure is integral to alleviating the effects of the illness. Without my girlfriend’s love, concern and occasional scolding words of wisdom (much-needed, I can tell you that), I doubt I’d be here candidly writing this article with Echo. And through open, honest dialogue, my friends acknowledge that I can’t quite drink as much as I used to be able to on nights out. Cheers!

From speaking to people on the Facebook group, it becomes clear that positivity and connectivity are key to ensuring we live as healthy and fulfilling a life as possible. Ai, another member of the group, sums this up nicely: "...overall, I guess being more positive towards life, a healthy lifestyle and praying are the things that are helpful to us who have [MVP].”

As part of this lifestyle change I have adopted a plant-based diet for overall health reasons, and ensure to take magnesium supplements on a daily basis. Although I still get symptoms on most days, they are actually less severe than they used to be. So a success of sorts!

Believe me, there are still areas that need improving: getting more sleep and exercising more regularly are my immediate priorities. However, where I am now is a far cry from the times I would spend all day in bed with inexplicable physical pain and wallow in a self-perpetuating cycle of anxiety. And for that I’m thankful.

Conclusion

In a worst-case scenario, my mitral valve abnormality may have to be fixed by valve replacement surgery or open heart surgery in the future. However, I’m hoping to find other ways to alleviate my symptoms and make the prolapse better wherever possible. At the moment, I don’t need to take medication for my MVP, and for the foreseeable future, my condition seems to be manageable as long as I keep on top of it.

In the meantime, it’s time to continue properly educating myself on MVP. Although it’s been nearly two years since my diagnosis, every day is still very much a learning curve.

What’s more, I’ve come to realise that we are so much more than our symptoms or conditions.

Echo-NHS-Healthcare-Joe-Lofts-Looking-Across-Blue-Mountains

The author in a typically ponderous pose

Further information

MVP is estimated to affect 1-3% of the UK’s population. This ranges from healthy people with no discernible symptoms to those who have severe regurgitation and may require open heart surgery.

If you have recently been diagnosed with MVP,  finding a good support group can really help. From personal experience with groups on Facebook, online platforms are a particularly useful way for myself and other MVPers to ask questions, give advice and support one another.

For more information on the causes and symptoms of mitral valve prolapse, the NHS Choices site is a good resource.

If you feel like you may be experiencing mitral valve prolapse symptoms, talk to your GP or cardiologist.



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