Lynne-Supraventricular Tachycardia-Pacemaker A mother s perspective Amy started fainting unexpectedly as a child. When she was checked by a doctor, her heart rhythm was always normal so she was told she was fine. After years of persistence and referrals, Amy was finally diagnosed with SVT. This is her mum, Lynne Lynch s story of her daughter s journey with an arrhythmia. Childhood As a young child, Amy used to faint whenever she hurt herself. Whether it was a bump to her knee or a minor cut; she would faint. As a family we became used to Amy having one of her episodes. We went to our GP who said she was fine. Aged 11, Amy started to complain about her heart bumping around in her chest and said she felt odd. On one of these occasions, I checked her pulse; it was 240 beats per minute! I m a nurse, so I knew I had recorded her pulse accurately and that her heart rate was far from normal. I explained her symptoms to our GP, who referred Amy to a cardiologist. Echocardiograms (ECG s) and tilt tests came back normal, so Amy was discharged.
Over the next couple of years Amy continued to faint once every two to three months and at other times she would also complain that her heart was bumping around in her chest. Her heartbeat was around 200 beats per minute. We had many appointments with our GP and another referral to a cardiologist. More ECG s and tilt tests were carried out. Again, the results were normal. I was told it was probably hormonal and young girls are prone to fainting, so she would be fine. I did not think that Amy was fine. It was not normal. Episodes As a family we developed a routine when Amy fainted. It happened frequently at night when we were woken by a loud thud. It was the sound of Amy collapsing to the floor. I would find her unconscious, deathly pale, very still, not breathing and I could never find her pulse. I would cuddle her and tell her she would be fine and I was with her. I knew that even though a person was unconscious they could often hear and she needed reassurance as it was so frightening for her. My son was in charge of calling an ambulance and my other daughter would try to reassure me that Amy would be alright. Often Amy injured herself when she suddenly collapsed; a swollen lip, a bloodied nose and even a carpet burn on her face as she hit the deck. Amy would be unconscious for about five minutes but it felt like a life time until she would start to make grunting sounds and then suddenly inhale and be back to normal. By the time the ambulance arrived Amy would be fully alert, not in a confused state, just feeling slightly tired. Outwardly she looked great and her colour would be back to normal. She described the feeling as though she was dying. We had many trips in the ambulance to the A&E department and all tests showed a normal heart rhythm. Diagnosis Again we saw a cardiologist who conducted more tilt tests and ECG s, which all showed normal heart rhythm. I was told that Amy was well. The doctor inferred that I was incorrectly recording her pulse rate because it s very difficult to feel a pulse rate so fast. At this point I thought the cardiologist felt I was a neurotic mother. It was a dreadful time.
I knew that Amy s heart rate was too fast and it was definitely not normal. However they agreed to give Amy a heart monitor to record her heart rate at home. Luckily we managed to record her heartbeat when she complained that it was beating fast. Within a few weeks Amy was diagnosed with supra ventricular tachycardia (SVT). Cardiac ablation The cardiologist recommended that Amy should have cardiac ablation. I spent hours on the Internet researching the procedure until I felt satisfied that it was right for my daughter. It was a traumatic time for a 13-year-old and her family, but we coped. I was encouraged by the thought that at last Amy was cured. For six months she didn t faint. It was such a relief that my beautiful daughter was fine; the ablation was successful. But then As a young woman One night, I heard the thud again. I found Amy lying on the floor not moving, not breathing, deathly pale and I could not find her pulse. As before, when the paramedics looked at the ECG it was normal, no abnormal heart rhythm detected. Over the next few years I realised that although I desperately wanted to, I could not wrap Amy up in cotton wool and I could not prevent her from going out. She went out with her friends who all knew what to do should Amy have one of her episodes, as I had instructed them. They were very supportive and indeed they were with Amy when she collapsed and they would look after her. Amy used to feel very embarrassed when she fainted. She had no warning signs and no control over where, when or how she would fall. Manchester Royal Infirmary Amy was now 24-years-old. I was fearful that Amy would not wake up from one of her episodes. I lived with the daily fear that the next faint would be the last. I trawled the Internet and found the unexplained blackout clinic at Manchester Royal Infirmary. I went to my GP but he was unaware of the clinic so I showed him what I had researched and persuaded him to refer Amy. We went to the clinic and a specialist nurse took a very detailed account of what happened to Amy when she collapsed.
Amy explained that she had no control over when she fainted, she had no warning signs, but from a process of elimination we realised that if she experienced any pain she would definitely faint. The doctor agreed to inflict some pain on Amy and simultaneously record her heart rate to monitor the reaction. We all agreed that if they put a cannula into Amy s arm she would more than likely faint - this was nothing to do with a needle phobia. The cannula was purely a way to inflict minimal pain. A nurse, doctor and I watched the ECG screen as a cannula was injected in Amy s arm. AMY DID IT! Her heart stopped beating, her blood pressure dropped; she went unconscious, just as she had done in the middle of the night. When she came around she looked at me and said Mum I did it, I did it, have they got it on the ECG? Through tears I said Yes! A whole range of emotions poured out; relief, fear, joy. At last the ECG showed and verified what I had always believed. Consequently, Amy had a dual lead pacemaker fitted under general anesthetic. It took a few months for her to adjust to it emotionally and physically. When her pacemaker kicked in, it paced her heart and it felt very uncomfortable. Her heart would suddenly give Amy a strong heartbeat that made her feel slightly light-headed. Amy became used to the sensation. Living with a pacemaker She adapted to using her mobile phone on her right side away from the pacemaker. She began walking quickly through shop security systems and also became aware not to stand near to microwave ovens (old microwave ovens can leak) as all the above caused her pacemaker to cause a tickling sensation in her chest. Emotionally it took time for Amy to adjust to the thought of having bit of machinery in her chest, but lots of talking helped. She was very conscious of the scar on her chest but now she is able to enjoy her life and there are no more bumps in the night. Amy calls her pacemaker her little friend in her chest that keeps her alive. The strain of the years before the pacemaker was almost unbearable; I don t think I ever had a restful night s sleep. It was very difficult to keep on accessing our GP and cardiologists when year after year all tests were normal and they told me Amy was fine. My gut and
particularly my maternal instinct were absolutely right. Amy eventually had the correct diagnosis and effective treatment. Looking ahead We often talk about the times when Amy fainted and we can all look back and laugh. I think the laughter is a coping mechanism that we ve developed to help us deal with it. For example, the time that my son was talking to the ambulance control, telling them that Amy was unconscious, she had no pulse and that she had an STD! Of course he meant Amy had SVT. We often wonder what the ambulance controller thought It turned out well for Amy and my family due to our determination and the pioneering work done at the blackout clinic. Therefore I would urge anyone who has unexplained blackouts to seek medical advice, even if all tests prove to be normal, to keep on seeking a doctor who listens carefully to the patient and the family. Amy is now 28, enjoys a wonderful career, leads a normal life (apart from the routine checkups at the pacemaker clinic) and is planning her wedding.