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Matthew Baldry

Gene testing shows our children are not affected.  Matthew Baldry, diagnosed at 37, talks about gene testing and his open heart surgery

Matthew was out cycling with his children within 12 weeks of open heart surgery

I was just your average 37 year-old male — married with two small children, didn’t smoke, didn’t drink to excess and was reasonably fit.

I started to get breathless walking or cutting the lawn. On a bad day walking up a flight of stairs would leave me gasping for breath.

Like most men I just ignored it as I showed no other signs of being ill. After nagging from my wife I made an appointment with my GP to keep my wife quiet.

He detected a heart murmur and referred me to our local hospital which sent me for an echocardiogram. The technician was very chatty to start with explaining what she could see on the screen, and then all of a sudden she went very quiet.

It was from this echo that I was diagnosed with hypertrophic cardiomyopathy (HCM). To say that this was a shock was an understatement. No other member in the family had a heart condition and all have lived long and active lives. To suddenly be told not to over-exert yourself and that you had been lucky to be diagnosed was difficult to take in. 

I suppose I was lucky in that I didn’t play football, rugby and those sort of things which I would have had to give up. But I did find it galling to think that I couldn’t do these things even if I wanted to. Not being able to do certain things for health reasons when you don’t feel ill takes some adjustment. 

Betablockers were prescribed and life carried on at a more controlled pace.

I was referred to Wythenshaw Hospital where there was a specialist with an interest in HCM and alcohol ablation (alcohol is injected into the heart muscle to relieve the obstruction). He was superb in explaining the condition, what the options were and how he wanted to treat me — starting with drugs, and with surgery the last course of action.

Regular checks and increases in betablockers controlled my condition to start with. We then started to talk about the idea of surgery — again another shock as I had never spent a night in hospital before, let alone had an operation. Alcohol ablation was ruled out because of the extent of the obstruction and they felt I was too young for it.

The specialist referred me to the Heart Hospital in London and more tests followed. The introduction of anti-arrhythmia drugs and the blood clot prevention warfarin again brought my symptoms under control.

We had been told all along that this was an inherited condition and  there was a 50-50 chance that it could have been passed on to my children, aged two and five at the time. 

The thought of them having the condition was worse than my own diagnosis. I could deal with it but how could you explain this to a small child who wanted to run around everywhere at full speed.

We had told the children that dad had something wrong with his heart that meant he couldn’t chase them around as much as they would like.  One day when they were lying on my chest one said that my heart was making shlurpy noises, and from then on it became dad’s shlurpy heart.

Regular visits to the Heart Hospital soon showed that the drugs were losing their effectiveness and a myectomy (a section of the thickened heart muscle is surgically removed to help relieve the obstruction) was the only real solution.

After discussing the pros and cons with the consultants and my wife, I was put on the waiting list.

Genetic testing of my blood found the gene mutation and so the children could be tested. When we were told that neither carried the gene mutation all I wanted to do was cry and scream “thank you” to whoever was listening.

Arriving home that afternoon there was an answerphone message to say I could go to London the next week to have a pre-op appointment for my operation the following week. That is one day I will never forget – the emotional highs and lows were like a roller coaster only much more exhausting.

So in May 2009 I had a myectomy, mitral valve repair and closure of the left arterial appendage. Everyone at the Heart Hospital from porters, cleaners and nurses to surgical staff were amazing. I can’t thank them enough for what they did. It was almost a pleasure.

A week after the operation I went home to start my rehabilitation – walking a lot and building me back up. After five weeks I started driving and returned to work part time. 

I’m writing this 12 weeks after my operation and can’t believe how  it has transformed my life. I’m now back at work full time and recently I went cycling with the children through the forest near where we live. This is something I couldn’t have dreamed of doing for a good few years and it was fantastic.

If I could give advice to anyone about to go through this process it would be don’t be scared (easy to say) but there is as much or as little help as you want out there. Everyone you come into contact with wants to help and is amazing in their support. And if Joe average, who is a huge wimp like me, can get through it then anyone can.

Matthew is now a member of the CMA's key contact network, a group of volunteers affected by cardiomyopathy who talk to others by phone or email. For more information about the network, email Sarah Dennis

The Cardiomyopathy Association's Registered Charity Number is 803262.
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