Friday 3 March 2023

Living with Atrial Fibrillation and the term Heart Failure

 It has been 12 months since I was diagnosed with Atrial fibrillation.   In March 2022, my annual heart check with the Scottish Adult Congenital Cardiac Services (SACCS) team at the Golden Jubilee hospital had been pulled forward a few weeks after I had noticed a significant drop in my exercise tolerance.  My appointment was the same as any other visit to my heart clinic, unfortunately the outcome of the tests would result in a notable alteration in my cardiac treatment and condition.


I was born in 1978 with tetralogy of fallots, which is a combination of four congenital heart defects. The condition causes a reduction in oxygen in the blood, and left untreated can be fatal. I’ve had a number of life changing and life saving operations over the last 40 odd years, and the specialists guiding me through my care have always provided remarkable support for  my family and I.

After the Covid restrictions started to lift in early 2022, I found if difficult to get back to any kind of routine. I had gained weight, but the prospect of returning to normal activities again pushed me to try to increase my exercise output.  I started cycling on my exercise bike and lost a few pounds, only to regain the weight a few days later – this became a frustrating pattern.   On a day out with my wife, we walked along Buchanan Street in Glasgow city centre.   The stroll turned into a bit of a marathon for me.    I had to stop repeatedly in order to get my breath back and cope with exhaustion. When we returned home my ankles and legs were remarkably swollen and puffy.


The next day I made the trip to the Tony Macaroni stadium in Livingston with my children as part of our obsession with following Celtic wherever we can. The day stands out for two reasons, firstly we got to see Celtic defeat Livingston at “ the spaghettihad" for the first time together,,and secondly I started to feel very strong arrhythmias throughout the match.   The sensations were frightening and left me feeling ill.  That evening, my sleep pattern was a mess, waking up every hour or so gasping for breath – something definitely wasn't right.


At my hospital appointment, I was given an MOT of my heart functions through an ECG and Echocardiography scan, and when I spoke with my heart specialist and explained my recent struggles she was able to confirm that my heart was in Atrial fibrillation.   I was admitted to the hospital directly after my appointment and given a strong dose of diuretics intravenously to help flush the excess fluids from my body.  I was added to the schedule for a cardioversion procedure the next day so that the specialists could get my heart back to a regular less dangerous rhythm.  


I was discharged from the hospital the day after my cardioversion, as my heart had thankfully returned to a more stable rate.  After discussing the details of my hospital admission with the SACCS team I was still afraid of the term Heart Failure and what it would mean for me and my family going forward.   I tried to adopt a more Mediterranean diet, but it is not always easy to maintain focus – even when you know it’s for the best.

A year later the specialists in charge if my care continue to support me and provide guidance on so  many different factors affecting my condition. In late 2022 I started to experience further arrhythmias and once again reached out to my clinical support team, this prompted a whole raft of changes to my medication which I try to understand as best as I can, sharing the background of these with my family.   I am currently on a waiting list for an ablation procedure, which again should improve the symptoms I experience as part of my Atrial Fibrillation condition.


I am more active thanks to the care of the SACCS team, doctors, nurses and specialists.   I am able to enjoy going for a walk again, albeit not as brisk or as long as I did previously , but with the continued support from the hospital, family and friends I know that each step is a step in the right direction in living with Atrial fibrillation and heart failure.


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