Paul Cowling-DCM

Paul (cropped photo)Before I share my experiences and try to give some idea of how I try to cope with what has happened, one thing should be made very clear: having a heart condition sucks. I mean, it really sucks. It’s a massive thing to have to comprehend; that the core element of us, the heart, doesn’t work as it should. Or might not at some unspecified time in the future. How do you process that? With all the other challenges that we face in life, whether it’s exams, or paying rent, or accidentally locking yourself out when doing the bins and having to wake up your neighbours at 7:30am to get back in (I’m still so sorry Flat 19), having your body fundamentally betray you is hard to take.

In my particular case I had a cardiac arrest when playing football two years ago. If I hadn’t been with a group of such amazing people who knew CPR and kept me alive, or if I hadn’t been playing on the corner of Tooting Bec Common closest to St George’s Hospital, I might not be here today. I have no recollection of the day, waking up in the ICU on a Tuesday afternoon and thinking it was Sunday morning. The details of what happened keep on changing depending on whom I ask. At first I was told that my heart stopped for a few seconds, but that turned into 4 minutes, which has now become just over 30 minutes after I spoke to one of the London Ambulance Service guys who kept me alive. He also went on to tell me: “You turned the colour of a dead person and you weren’t responding. I thought you were dead.” Thanks, Bash!

And so here I am, diagnosed with dilated cardiomyopathy and with an ICD fitted and on more medication than I thought was possible. I am so thankful beyond words to my friends who not only saved me, but have also kept me sane throughout this whole time. The ambulance and NHS staff who have kept me alive also rarely get enough praise and I will never be able to thank them for what they have done.

How to follow on from this good news tale? That really is the question that most of us need answering more than how to deal with the medical side of things – medically trained professionals are here for that! The technical information is useful and the detailed reasoning behind the medication they give you is comforting. Your friends and family will always be there and, while maybe not having had to go through the mill quite as horrifically as my lucky lot, you should never tire of their concern and support (even if it does grate on your nerves being asked about whether or not that shopping bag is too heavy…). But no-one, and I mean no-one, is going to know your condition as well as you because it’s your body and you are the one who knows its rhythms and how it is responding to activity, stress, medication – the list goes on. Your cardiologist can give the most detailed explanation of beta-blocker medication and why you need to increase your dose, but telling you about how rubbish it is to wake up to chest pain and freaking out because you don’t know if it is something serious, or just the fact that you did a load of carrying stuff yesterday (maybe that shopping bag WAS too heavy…), is not something they can help you with.

Paul

This is why CRY has been so helpful to me and anyone with a heart condition, trying to find our places in the world. Sorry to sound dramatic, but it is really does feel that confusing and challenging at times. At others it feels like the biggest fuss in the world over something that had completely gone out of your mind today. The support that CRY offers, through both its dedicated staff and in the opportunity to talk to other people with similar experiences, if not conditions, is invaluable. Because let’s remember my starting point: having a heart condition sucks. CRY allows people like you and I to share our experiences with people who really understand the range of emotions that you are going through. I have been to three meetings so far and I have left every single one feeling more positive and well informed than when I went in. It is not the nerve-wracking one-to-one set up with a doctor or therapist, just a group of people having a chat. These guys “get it” – you aren’t going to be asked “Are you sure you should be doing that?” or “I think you should take it easy”. They understand the frustration, the uncertainty, the fear that maybe you don’t want to show anyone else. CRY is a community that allows you to gain an understanding, and maybe acceptance, of your condition. And that should always be the goal – living with this condition (varied!) in the best way possible for you, without going insane through an overload of advice. Knowing that I am not alone and that the stories I have told has given others some positive reinforcement is one of the best things that could happen from getting this heart condition (which sucks).

So don’t be isolated in this challenge – there are people ready and willing to help you. Yes, it’s a massive thing to have to deal with and you will carry it with you for the rest of your life. But you don’t have to carry it alone.

  • Paul (cropped photo)
  • Paul

Russell Goodman

Living with an implantable cardioverter defibrillator (ICD) and an undiagnosed condition

A healthy way to start the weekend, get up Saturday morning and go for a run. This was something my fiancée Charlotte and I enjoy regularly, sick this one however was very different.

After being out for just over an hour running the streets of Bath on a very sunny September Saturday, Charlotte and I returned to our flat when I suffered suddenly from a cardiac arrest. My heart rate shot up drastically causing me to pass out and completely lose any sign of a pulse.

My life-saving and truly courageous partner performed CPR on me until the ambulance arrived, whereupon I was shocked several times with the on-board defibrillator by paramedics. If it wasn’t for her immediate actions and quick thinking, followed by the quick ambulance response, things would have been very different for me.

I was immediately sent to the intensive care unit of Royal United Hospital in Bath for 3 days being closely monitored. My body temperature was refrigerated to preserve my brain function. After this I was then transferred to the cardiac ward and had no idea how or why I was there.

My fiancée, her family and my own family experienced such extreme uncertainty particularly in those early days, I really can’t imagine the anxiety, worry and stress that was felt.

I was totally unaware and have no memory of anything until at least a week later in hospital – convincing myself I’d been involved in a car accident and concerned at why my chest ached. I was told what happened to me, but it was still very hard to digest in my mind as I had no memory of anything that happened aside from a few minutes before the end of my run. At the time my short-term memory was very poor as I was unable to remember basic things.

Doctors explained to me their thoughts and offered possible answers on what had happened. Initially it was thought I’d caught a virus and was overly exhausted. After 7 weeks being in hospital, examined and scanned several times, I was told I’d have to have an implantable cardioverter defibrillator (ICD) implanted and take daily beta-blockers. At the time I was an electrician, one of the very few jobs not recommended by cardiologists, forcing me to give up and make a new start in my career.

In 2009 I experienced 2 inappropriate shocks from my defibrillator in February, setting me back physically and mentally. Consequently, I was required to have my ICD lead repositioned involving invasive surgery on my 27th birthday.

Today I am still under doctor’s investigation at the Heart Hospital in London, as I have no firm diagnosis for a cardiac illness. Initially, it was suspected that I had arrhythmogenic right ventricular cardiomyopathy (hospital discharge-diagnosis). However, following ECHOs, ECGs, blood tests and my defibrillator downloads, hypertrophic cardiomyopathy and dilated cardiomyopathy were investigated – but (common-gene) genetic testing has proved cardiomyopathy is not an accurate diagnosis. My immediate family have all been screened and none are showing irregular or concerning signs like me, including my identical twin brother.

In October 2009 I completed the Cardiff Half Marathon, which was a real achievement for me both physically and mentally. Since then I have gone on to complete several 10-mile races and fully intend completing a marathon in the near future. I enjoy keeping fit and will continue to do so, despite my medical history.

Myocarditis

Read personal stories from myheart members with myocarditis here.

The term myocarditis refers to inflammation of the heart muscle. It is most often due to viral illness. Other causes include drug abuse and autoimmune disorders such as systemic lupus erythematosus. Viral myocarditis is relatively common, but most cases are very mild and never come to the attention of the doctor. However, some cases are severe and can lead to considerable impairment in the capacity of the heart to pump efficiently, resulting in severe heart failure. It is the result of poor contraction or electrical instability of the heart due to the inflammation of the heart muscle.

What are the symptoms?

Most patients feel feverish and have generalised aches and pains as with any other viral illness. When the heart is severely affected the patients feel tired and breathless. Chest pain and palpitations are relatively common under these circumstances.Apart from a rapid heart rate, the doctor may not find any other abnormalities when examining the patients with mild myocarditis. However, in severely affected individuals there is evidence of heart failure.

How is it diagnosed?

Simple blood tests may demonstrate markers of inflammation. The ECG may show changes, which are usually non-specific and occur in many other cardiac diseases. However, the patient’s symptoms and the presence of a fever may raise the suspicion of myocarditis. An echocardiogram (ultrasound of the heart) will reveal an enlarged heart, which is poorly contracting. In very mild cases both the ECG and the echocardiogram may be normal and in these situations one should exercise caution and not participate in any sporting activity when symptoms of a flu-like illness are present. In patients presenting with prominent cardiac symptoms and signs, the diagnosis can be confirmed by a biopsy (small specimen of the heart) taken from the right ventricle. More recently, MRI has emerged as a useful method of diagnosing an inflamed myocardium (the heart’s muscular wall).

Treatment and advice

All patients should rest. Patients with heart failure and complicated electrical disturbances of the heart require hospital admission to manage these complications. Steroids are reserved for patients with auto-immune myocarditis at cardiac biopsy.

Refrain from sporting activity until all symptoms have subsided and the ECG and echocardiogram appearances are normal. Generally competitive athletes are advised to refrain from sporting activities during flu-like illness until the symptoms settle, as the majority of cases of myocarditis produce no cardiovascular symptoms.

Over 75% of the patients improve within two weeks without any complications. Approximately 10% of patients proceed to develop dilated cardiomyopathy and require life long treatment with heart failure medication.