Heart Failure – State of play

My pacemaker check ups are every 6 months and in the time I have had my device (Barry the box) they are just run of the mill check ups. However last Monday while both Lorna and I are on our joint check ups with Jackie who loves the fact we met through our heart condition and always chatty, just another example of those superb NHS staff we have met on our journey, mentions am now within my final 2 years of battery life.

7 years countdown to 3years always seemed a long time away but on hearing the 2 year mark it suddenly hit home that my life as I know it will change soon. Funny how Lorna and I have different points where our conditions hit home to us.

The last 5 years since the AV Node ablation have honestly been wonderful, no racing heart just for starters but everything my wonderful 50inch waist Cardiologist thought would be the benefits have been benefits. I have had less fatigue and felt more alert. I then returned to work and taking part in triathlons with his quotes of “only you know how you feel” and “I will probably drop dead before you” ringing in my ears!

Jackie’s question “why don’t you have a upper chamber lead” was beyond my technical knowledge so as usual my eyes swivel towards Lorna for an appropriate response! Lorna steps in to explain with answers and more importantly questions as to whether there is an issue! Jackie’s response was “ok John think I better do a ECG” so will let Lorna explain now.

`John was diagnosed with a condition called Atrial Fibrilation along with his dilated cardiomyopathy. The atrium is the top part of your heart and the ventricles are the bottom part. The atrium is the electrics and the ventricles the pump. The Atrium control the ventricles via the AV node by sending a signal telling the ventricles how often to beat and therefore pump the blood around your body. Atrial fibrilation occurs when the electrical pathways in the atrium malfunction and send incorrect messages to the ventricles. The heart rate become erratic and the heart becomes inefficient.

Initially the Cardiologist tried to control this with a combination of drugs unfortunately it didn`t work. The next step would usually be an alcohol ablation to eradicate the electrical pathways that weren`t functioning correctly however it was felt that Johns AF was too widespread and that would most probably be unsuccessful. So the cardiologist and electrophysicist decided that they would like to try something fairly unusual for a relatively young and still quite healthy patient. Something that had only ever been done to elderly patients nearing the end of their life. They decided to fit John with a biventricular pacemaker and then completely disconnect the atrium from the ventricles by ablating his AV node. This would mean that John would continue to be in AF but as the atrium was no longer able to send signals to the ventricles telling them what to do and instead the ventricles would be instructed by the pacemaker, his heart would pump normally. Of course this also means if Johns pacemaker malfunctions in any way his heart will not beat on its own. He will have approximately half an hour to get to a hospital or he will die.

Whilst Jackie was checking Johns pacemaker she thought she saw indications of an abnormal heart rate that could be caused by AF in someone who’s AV node was still in situ.

The aim of the ECG was to look at this more closely. As I said previously this course of treatment is very much ‘new` and one of the long term problems we were warned could happen was that the AV node could possibly grow back! After the ECG Jackie seemed content that everything is as it should be although she has referred John back to the cardiologist for a further check just to be on the safe side.`

So my personally important landmark was marked with a mini drama to add to the wild mind talk going on in my head. I have not had a day off sick in over 3 years and despite having a boss who is not afraid to discuss or even joke about my condition I am now facing the chats I have been dreading about explaining how long I will be off or even if I will return this time be it for physical or physiological reasons.

Will my biggest fear of physical deterioration become real and will I become a burden to those who I love most? I have seen the worse of DCM so I am under no illusions of how lucky I have been or am every day or simply is the luck of my journey of finding the best people about to end.

The countdown continues
*The opinions expressed are the guests own and do not necessarily reflect the views of the World Health Innovation Summit.

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