Susan Manzi - coping with cardiomyopathy and 300 pupils

Headteacher Susan Manzi says she has undergone many treatments but is still able to enjoy her job

Susan Manzi and husband Ian on a Venice boat trip

I was 30 when I first started visiting my GP practice concerned about tiredness and palpitations. At the time I had two children aged three and five years and I think they put it down to me working full time as a teacher and running a home and family.

For two years I was palmed off with: “It’s stress. You need to relax more” – quite amusing with a full time job and family. So I soldiered on. Teachers tend to save up all their ailments for holiday periods and it was another two years before I went back again – in a summer break – and was prescribed an inhaler for asthma as I was now complaining of breathlessness on exertion and during the night.

The palpitations used to come upon me at times of rest. When I was busy I didn’t notice them but after the children were in bed and my husband and I had our meal and maybe watched a little television or did paperwork and planning for the next day’s lessons, I could feel my heart skip a beat and then race to settle back to a normal rhythm.

I persevered with the inhaler sporadically for two years before I plucked up the courage to tackle the problem again. All the time the palpitations were becoming more noticeable but still always at rest.

This time I was told it was probably an ulcer or indigestion. So I was given antacid medication and advised to stop worrying – I was far too young for heart problems. 

By now I was 34. So I took the medication and suffered with an allergic reaction for three months before it settled down. So I stayed away from the GP for a while longer.

When I was 27 my father had had a major heart attack followed by a triple by-pass operation. This was never far from the back of my mind each time I complained about palpitations and tiredness.

Diagnosis

Another two years ticked by and the palpitations had not abated so I went back to my GP again. I just know they had me down as a neurotic or hypochondriac!

This time it was suggested that as my mother had suffered from an early menopause, I should have a blood test and take hormone replacement therapy (HRT). This I did and despite inconclusive blood test results, I persevered with HRT for another two years. It gave me spots and added to weight gain but one always feels that your doctor knows best and must be right. By now I was 38 and very fed up. I had other gynaecological problems going on too so I left the HRT off and dealt with the other worries at that time.

My palpitations were increasing in frequency and length, breathlessness was becoming a problem in daily life and I had had a few nasty dizzy spells that were put down to ear infections. 

Finally, in the summer of 2001 – I went back to my GP and threw a hissy fit in the surgery. I begged to be referred to a heart specialist and only then did I begin to track down what my problem was.

In October of that year I saw the wonderful Dr Brennand-Roper, a consultant at Dartford Hospital. I had an ECG and echo and within a few days I was given the diagnosis of hypertrophic cardiomyopathy (HCM). It was a relief to know that I hadn’t been making it all up and it wasn’t just stress. Of course, we came home and researched it on the internet and frightened ourselves to bits!

Dr Brennand–Roper referred me to a specialist clinic run by Professor William McKenna (at St George’s Hospital, Tooting at the time) and there began a long trawl towards correct medication and management. It had taken ten years to find a correct diagnosis.

After screening was done on my parents, my brother and my children, we discovered that my father has it too. His mother died prematurely when he was 25. At the time it was said to be a stroke. She was 45. Mercifully, so far both of my children are unaffected.

In August 2003, while I was taking verapimil, my husband and family went on our annual summer break to Menorca and while there the medication stopped working effectively. I had the most terrible night of breathlessness and just wanted to go home. We booked a flight back to the UK and I went straight to my local hospital where I was diagnosed by an A&E doctor with heart failure and asked by a nurse which Christian denomination I would like to lead my funeral!

However, within the next hour, while my husband struggled to find the words to ring my parents, another A&E doctor appeared and told me that it was a virus and I should go home and drink lots of Vitamin C. I was discharged with a diuretic tablet and told I would feel better within a day or two.

This didn’t happen. I was still struggling two days later. My GP sent me straight back to hospital and rang the consultant herself. I was admitted and put on a heart monitor which kept bleeping loudly with each erratic rhythm. One of the nurses tutted at me for keeping other patients awake and changed the heart monitor to a silent version that they could monitor from their desk. Clearly, at 42 and despite all the symptoms they really didn’t feel anything major could be wrong with me!

I spent three days in my local hospital with various ward doctors struggling to reach any diagnosis. Fortunately, I had a London Heart Hospital appointment that week so I asked to go home and sought advice at the Heart Hospital. They soon worked out that the medication had ceased to be effective and also that I had a left ventricle obstruction. I was devastated to be told the best remedy was a myectomy - surgery to remove some of my heart’s thickened muscle.

Heart surgery

It’s worrying to be facing open heart surgery at 42, with two children of 17 and 15 and the constant stress on your husband and wider family. However, I was advised that the surgery would be in November or December that year and I took the next three months off work. I was by now a head teacher and while I could carry out the basic admin work, I couldn’t lead assemblies or take meetings as I didn’t have the breath! 

The wonderful Dr Tsang and the team at the London Heart Hospital went ahead with the operation on December 15th, 2003. I was back at work by Easter and feeling much better.

For quite a while, I managed without any medication but have recently started taking the calcium channel blocker diltiazem. I also joined a research project being carried out at the University of  Birmingham’s department of cardiovascular medicine (Professor Michael Frenneaux’s team). 

Having been a teacher all my working life, I believe that research and education are the way forward for resolving unusual conditions of any type. I tried the medication trial but think I probably had the placebo as I didn’t notice any improvements and I have recently had a biventricular pacemaker fitted.

Biventricular pacemaker

I was admitted to the Heart Hospital earlier this year for the pacemaker insertion. In my case it took nearly five hours. The third lead in this new type of pacemaker needs to be fed down the sinus vein and right around the back of the heart. 

We HCM patients all have slightly different plumbing arrangements and this proved very time consuming for the team working on me. However, I recovered well and was looking forward to going home 48 hours later when it was discovered that this third lead had drifted out of place. Two days later I had to have it re-positioned. All went well and I went home the following day.

At the point of check up a month later, the lead was found to have drifted out of place again and I am now looking at having it done again this summer with a more expensive lead that can ‘wedge’ itself in the sinus vein. Despite all of this I remain reasonably well and resolutely cheerful and am still employed full time leading a school of 300 children in Kent and enjoying my work very much.

I do get tired and the most difficult thing about this hidden disease is that you look well and people are amazed at how out of breath I am after a single flight of stairs or slight incline. 

I constantly have to remind myself not to over exert or carry too much and I cannot run around with the children in PE any more, but I have a great family and I get lots of support at home and from my friends.

All in all it’s been a huge learning curve for all of us but I am eternally grateful to the super efficient team at the Heart Hospital who always treat you with dignity, courtesy and care.