If you haven't already read this article in the Guardian, please have
a look as there is a happy ending!

Karen
A-A Helpline


A machine keeps me alive

Tina Amiss
Saturday May 17, 2008

Guardian

One evening in 1994, I stopped breathing while watching TV.
Fortunately my husband Pete, a firefighter, had not gone to rugby
training that evening and resuscitated me. It was a very frightening
experience. After a battery of tests I was told I had cardiomyopathy,
an inherited heart muscle disorder. There are various types but mine,
which is called ARVC (arrhythmogenic right ventricular
cardiomyopathy), meant that damaged heart muscle was gradually
replaced by scar tissue and fat. A recognised cause of sudden death
in the young, ARVC also causes weakening of the heart's pumping
action.

I had been very fit and healthy throughout my 31 years - or so I
thought - but I began experiencing palpitations, light-headedness and
extreme tiredness. Initially, I was treated with medication and told
not to take part in vigorous sport. Gradually I improved, became
pretty much symptom-free, and was able to come off my medication and
resume a normal life. I went on to have two children. Apart from
regular checkups, I almost forgot I had a problem.

Then in 2002, I suffered a cardiac arrest in my sleep. My breathing
became very laboured and noisy, and woke Pete. Once again he
resuscitated me. I was now considered at high risk of sudden death
and told I should have an internal cardiac defibrillator (ICD)
implanted in my chest wall. This is a specialised pacemaker that not
only senses and corrects my irregular heartbeat, but also shocks my
heart if it develops a life-threatening rhythm. It has two main
components: the pulse generator (like a small computer that runs on a
battery) and leads that are connected to the heart. It monitors all
the time for an abnormal rhythm. If one is sensed, it determines what
type of treatment is needed, either pacing my heart or giving it a
controlled electric shock. Pacing feels like a fluttering in the
chest; a shock is like a strong thump.

The procedure was done under a local anaesthetic with sedation. I
went home the following day, and for the first week had to take care
not to lift my arms above shoulder height to allow the leads to
imbed. The scar is very small and neat, and I have a small bump where
the ICD sits beneath the skin near the collarbone.

Physically, my recovery was unremarkable. However, psychologically
and emotionally it was much harder. I became very aware of my
heartbeat and lived in fear of my device shocking me. I felt very
unwell, was unable to sleep, and thought life would never be normal
again. I knew I should be grateful for the device and that it should
give me reassurance, but that was a long time coming.

A few weeks after the ICD was fitted, I received my first shock. I
was walking along the road feeling fine and suddenly came over very
dizzy. As the device fired, I felt as if I'd been kicked in the chest
by a horse. And while it wasn't what I'd class as painful, it was
unpleasant and upsetting. I have had three more shocks since but with
these I have lost consciousness and have therefore not felt them. For
me losing consciousness is more scary than feeling the shock.

I am now back on medication and have not had any shocks for two
years. I have checkups every few months and know that I will have to
have the pulse generator replaced at some point as the battery life
is normally four to eight years.

My ICD has built-in features that protect it from interference from
most electrical appliances. However, it is sensitive to strong
electrical or magnetic fields. Therefore I hold my mobile phone on
the opposite side of my body to the ICD and do not linger in shop
doorways where they have anti-theft surveillance. At airports I do
not go through the security archway or have the handheld wand used on
me (I have an ID card that I show to security staff).

I lead a full and busy life, and while I have been advised not to
take part in competitive or combat sports, I continue going to the
gym, skiing and travelling. I recently became a trustee of the
Cardiomyopathy Association. The biggest headache for me and my family
is that after I've had a shock, I'm not allowed to drive for a
minimum of six months. I have now learned to live in harmony with my
ICD and not in fear of it. It literally saves my life and I am very
lucky to have it.