Paula Beck (Simmonds) wrote her story to be included in the myheart booklet which was launched in November, 2013.
I was diagnosed with Brugada syndrome on 8th August 2011 at St George’s Hospital. I am a mum of two, one of four siblings and was only 30 when diagnosed.
Our family underwent tests after my brother (Craig) suddenly died in Australia on 23rd April 2010, aged 31. Craig had two children, a daughter aged 8 and a son aged 2. Craig was such a loving, fit, healthy person who was a wonderful dad and had so much going for him. He lived in Queensland, Australia.
We all had ECG tests which were then followed by the ajmaline provocation test that showed strongly positive for the Brugada phenotype.
We didn’t know how my brother Craig died, so at the time of testing we were shocked that not only were we trying to deal with losing Craig but now we had to undergo tests to see if we had an hereditary heart condition that could have led to Craig’s death. I had no idea about genetic heart conditions before this and at the time it all felt alien.
The straight ECG test was fine, but I knew my 24 hour ECG test and exercise ECG test showed Brugada patterns, which made me concerned about the ajmaline test – especially putting my heart under that amount of stress. I was also trying to deal with the fact the rest of my family did not show Brugada readings on their ECG tests.
All my family had the ajmaline test on the same day. My dad, mum, sister and myself showed positive. Strangely, my other brother Gary was clear on all of the readings.
This diagnosis had a great impact on me. Initially I felt shocked and gutted but tried to stay positive. I thought that if this is why Craig died, then it’s lucky we have all found out so we can take precautions for ourselves, Craig’s children, my other brother’s children, my sister’s children and my children.
I then had an ICD fitted on 2nd May 2012 at St. George’s Hospital. I wouldn’t say I often get scared about things but, yes, I was scared before the operation. I decided to have this surgery under sedation but it didn’t work very well, so all I can say is that it was like being in a nightmare. The surgeon was extremely good and reassuring during the op, although I was awake and felt everything, even when unexpectedly my body jumped off the bed when they tested the ICD. That was extreme pain, but only for a few seconds.
After the operation I found myself so emotional, trying to deal with the fact I had a hard box inside my chest. I was constantly thinking of my brother Craig. On the ward I was surrounded by mainly older people. There was one younger lady who had just had a cardiac arrest. She had lost her memory and was really suffering trying to cope with everything that had happened to her. This put things into perspective for me. I was in some ways coming round to the fact I felt glad that I had this precaution inside of me. Also I was thinking about my two daughters and I hope they also take the precaution of having an ICD in the future – if they need to.
The first month was extremely hard emotionally, mentally and physically to come to terms with my diagnosis and the ICD in situ. I did a lot of exercise before this op and had to have a month off after. When I went back to exercising I found myself anxious, worried about how to begin exercising again. I was embarrassed about my scar, having to tell instructors and self-conscious about having to start exercising softly and with low weights. This was a challenge as the box kept moving around and felt weird. Also, because my muscle had been moved to the front I had lost a significant amount of strength in my left shoulder.
It appeared to me there was a lack of knowledge on the part of some exercise/gym centres with regards to young people with ICDs and heart conditions, to the extent of turning me away. This made me feel isolated and demoralised. I got great support from the CRY myheart meetings with other young people who had been through the same operation.
The impact of my diagnosis on my family is difficult to express, as it is strange to have both parents and my sister Brugada positive as well as me. In some ways I found this helped, as when my parents first found out my dad rang me in an emotional state and told me he was positive and it was his fault that everyone had it. Then seconds later I spoke to Mum who had just been diagnosed with it as well, so I thought at least neither of them feel like it’s only their fault.
I know my brother Gary felt uneasy and sorry for the rest of us, as he is fine. I worry about my sister as I feel she is still in denial about it all. Then I started to think about my children’s situation – my lovely daughters have a 50/50 chance of having Brugada syndrome and I may have passed this onto them. This makes me feel like I don’t want to have any more children at this present time but my feelings may change in the future.
Thankfully we have all found out and are aware of the necessary precautions that need to be taken so we won’t lose any other family member in this way.
My friends were very supportive through this time. Quite a few of them didn’t have any understanding or knowledge of Brugada syndrome, or any other genetic heart condition and I initially found it hard trying to explain.
Some people’s reaction to my scar was squeamish, it seemed as if they found it uncomfortable to look at. Personally I found this difficult and embarrassing to begin with. However, as time went on and with a few cheeky jokes about it, my confidence grew and I learnt to remember ‘why it is there’ (to protect and safeguard me if needed). With this in mind I learnt not to worry about what other people thought when they saw it.
Everything has been fine now and it has been a year since I had my ICD fitted. I exercise well and enjoy my life with the security of knowing I have the back up in place if needed.
People may think that younger people who have been screened will find it hard to come to terms with being diagnosed with a heart condition, but it would be much harder for their family to have to come to terms with losing someone so young, because they had not known they had a heart condition that could have been monitored and treated.
My eldest daughter is 8 (Chloe) and she understands why I had to have all these tests done and why I have an ICD. Chloe also understands why she will need to be tested as she gets older. Chloe joined me on the CRY London Bridges Walk last year.
She took the pictures and information into her school and gave a speech to her teacher and class friends on why she did the walk and the relevance it had to her. Both my daughters will be joining me on the CRY London Bridges Walk this year. I think screening is a necessity in the young as this is what is going to identify people at risk, save lives and prevent unexpected young sudden heart deaths.
Watch Paula and myheart member, Joseph Tanner, debate with CRY myheart cardiologist, Dr Michael Papadakis on exercising with an ICD below.