Long QT. Heart. Sudden Adult Death.

LONG QT….my ticking time bomb!

The first time it happened, 35 years ago,  Bloggerman was two and a half years old.  He ran off with excitement at a fairground at a holiday camp and suddenly disappeared in the crowd..  Later we found that he had collapsed in front of the roundabout and the Fair man, thinking he was dead, in panic, 

 had picked up his body and ran to the first aid post. where they banged his chest and he came round.. 
I thought they were being dramatic and he’d just fainted, but it happened again a couple of years later  at a hotel swimming pool in Devon. A man had to dive in and pull him from the bottom.

At seven he started having swimming lessons, he continued to have these “episodes” at the pool, and of course they called an ambulance and he ended up in A&E. a couple of times.   I suspected they were not just normal faints but it wasn’t until one was witnessed by a paramedic at the school sports day,  who told me that the “faints” were not normal,  that we got referred to a Paediatrician, who, after some tests for epilepsy,  told me there was nothing wrong with him,  I was a “neurotic mother” and to go away and let my son live his life!

So I did……with the result that at eleven, he had a cardiac arrest in a swimming pool in Ryhl,… was resuscitated by paramedics and spent a night in hospital, .where they advised me to get my GP to refer him to a specialist.

  This was such a frightening experience,  I am trained in CPR and used to emergency situations, but face with somebody I loved who was not breathing and had no pulse, I completely
 went to pieces.  Thank goodness there was an ambulance sited outside…

My GP referred me to a paediatric neurologist  and cardiologist at the local children hospital.  After two days of tests they finally got a diagnosis.  I was not neurotic, there was something wrong with his heart, which I did not understand, . but the dilemma was, what kind of treatment should they use? So they sent him to a specialist sports laboratory to try to induce an episode under controlled conditions.  Poor Bloggerman was hooked up to a drip and an ECG,  with a rescus team and put on an ever increasing treadmill

By this time Bloggerman was twelve and puberty had hit, he was now a man/ boy and something had changed.  Unable to induce an episode, they decided not to fit a pacemaker or give him drugs with side effects and wait and see.

The episodes stopped and we ceased to worry, then when he was 16 he went to a Locum GP and happened to mentioned he played football , at which point the doctor told him he should not be playing football with his condition, and had his family been tested?

It was then explained that his problem was a little known, ( at the time,) genetic condition called Long QT syndrome, whereby the heartbeat has a slightly  abnormal pattern which, if the heart beats very fast, (for example, when you exercise or become angry or afraid,)  can change into an even more abnormal pattern, which can cause unconsciousness and death.  Classically, it is a cause of death for young fit healthy people who die for no apparent reason, often when they are active. known as Sudden Adult Death.

So we all had tests. It was found that myself and  my mother also had the condition. Bloggerman has inherited it from me! I felt so guilty.   It all made sense now.  The “fainting ” episodes I had over the years since I was a child usually associated with anxiety or phobias.  My mother on the other had was around 70 and never had an episode.  My mum  also had a brother who had died suddenly at the age of 19 for no apparent reason.

It is not an easy thing to accept, that you and your loved ones, have a potentially life threatening condition that could kill any of you at any moment and that you have passed this on to your children.

 My reaction was to avoid anything that might make my hear beat faster.  I was horrified that I had run, swam, used a gym etc, so all that stopped.  I walked away from conflict and even avoided sex!  I suppose I went into denial, because I wouldn’t take it any further and did not attend any  appointments with the cardiologist. Soon I got used to the idea that death could happen any time and that is when I began to live life for today, I resumed my activities and realised that you need to love the people you love while you can.

Eventually several years later , in my 50’s., I DID go back to the cardiologist and had more 24hour ECG tapes, scans  and stress tests,…. things had improved,   I had not had an episode for around 20 years so after a long discussion I decided to take my chances an not have treatment that may do more harm than good and affect the quality of my life.

Since then both my son and daughter have had two beautiful boys each. Bloggermans children have inherited the condition, my daughters boys have not.

Much more is known about Long QT these days. Mention it to any doctor and they know what you are taking about. ( my GP had to look it up when I went back for the cardiologist referral)  So far the boys are OK, no episodes and they see a cardiologist regularly.  Their parents however have the same dilemma, to treat or not to treat.  especially as they are developing children,  plus as they are now getting older and more independent it is difficult  not to be  overprotective.

At school, they had to have all sorts of paper care plans etc, but the school had only  one first aider, trained in CPR!  A wake up call that all teachers should be CPR trained.  After all there must be other children with this condition in the school as yet undiagnosed, CPR is something needed immediately… and what if the first aider is not available!

In March, a 24 year old,  Premier League Bolton footballer Fabrice Muamba, had a cardiac arrest in the middle of a game and was resuscitated on the pitch , on TV in front of thousands of fans.  His heart stopped for 78 minutes.  He had made a good recovery, but this week announced his retirement.  He was a lucky one.  It is estimated that 600 young people in the UK,  die every year as a result of Sudden Adult Death syndrome.  All they needed was a 24 hour ECG tape and a scan,  to screen them..

So the motto, “life is too short, life is for living!” becomes even more poignant!

Love Denise

EDIT

Following my recent post about long QT syndrome I came across this e-petition for defibrillators to be in all schools and public places  plus screening for young people.  I would urge anybody reading  to sign it.  
It may one day save my grandsons lives.

Thanks




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5 thoughts on “LONG QT….my ticking time bomb!

  1. In spite of having read numerous reports about young adults who have died while playing sports, I've never heard about Long QT syndrome. Do the risks normally decline with age or are you an anomaly? I really admire your determination to live life to its fullest and to not let your condition stand in your way. As a parent/grandparent, however, I would have a much harder time not worrying about my loved ones.I agree that all teachers should be CPR trained. You never know when you're going to need it. When we lived in Indonesia, I hosted an English conversation group and suggested that we invite a medical professional to teach us CPR. Afterwards, all of the other mothers were very appreciative and felt better equipped to deal with potential emergencies. The idea came about after one of the Korean mothers told us how helpless she felt when her son drowned and she didn't know how to help him.And you're so right – life is for living.Big hugs, Denise, and thanks for this post!

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  2. Thanks for the hugs Mary Kay.I din't know if I am an anomaly or not. There must be millions of adults out there with undiagnosed long QT that survive. You only know if you are investigated for an incident or die. This is why we feel heightening awareness, screening and EVERBODY being trained in CPR is so important. As with this post. My mother lived to 83 both with undiagnosed long QT and one kidney, never had an episode. My son has not had an episode for 25 years. I read somewhere that the QT interval can shorten at puberty so maybe that explains it. His QT interval is still prolonged however. .It's a bit difficult to explain and quite complicated, but put simply, this condition is shown by a prolonged interval between the Q R S T waves in the pattern of the heartbeat on an ECG. (if you understand that each point of the pattern has an identifying letter) and certainly one of the boys QT interval had shortened since the first ECG at his birth.My QT interval had also shortened and was marginal at 50. As I hadn't had an episode for 20 years despite strenuous sports, marathons running etc, my cardiologist said maybe the body compensates in some way. I did have a slow pulse which helps. Not sure if that is because I was very fit or had occurred naturally. I felt that the risks of treatment outweighed the risks of long QT and quality of life was more important.. So declined. It is ironic that being fit helps the heart not to go into overdrive, yet exerting yourself can cause the fast heart rate that causes the episode. Fortunately I am not competitive so will stop short of pushing myself too far.Sorry if I am going on now. I wrote this post because the retirement of Fabrice Muamba reminded us about the long QT. The post has caused me some anxiety again by reminding me about the whole thing and yes I do worry about my son and grandchildren all the time, doesn't bear thinking about…. although with time it is easy to become complacent…. With hindsight it was not a good idea to fast the other week as low potassium levels, as when you are dehydrated, can be dangerous to people with long QT. The burden of this is on my daughter in law, as she has a husband and two sons with the condition. I have the advantage that I too have the condition and have lived with it for a long time, so know how it feels. My son rarely talks about it, ( "what is there to talk about?") just gets annoyed because insurance costs so much. To her credit, my DIL Wittylady, has given both the boys swimming lessons, as Bloggermans episodes classically happened mainly whilst swimming. Ironically, my episodes happened around anxiety … my blood and needle phobia!.We have been approached for research, as I suppose it is rare to get three surviving generations, but really, once you get over the initial panic we just want to get on with our lives and not make a big deal of it.Please continue to encourage people to learn CPR.Hugs to you too. Continue to enjoy your holiday.Have I mentioned I am going to Boston soon?Love Denise

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  3. Thanks for the additional explanations, Denise. I'll reference your post whenever I'm involved in a discussion about the need for CPR training.You're going to Boston in 22 days? I had no idea…. 😉 I love that you put the ticker for Paris and Boston on your blog. Have a wonderful time at the vendanges! We'll be in Deauville but I hope to see you the next time that you're here.

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  4. Pingback: LIVING IN A PARALLEL UNIVERSE…. | denisefrombolton

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