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Trish’s Story

My journey of living with chronic Atrial Fibrillation (AF) began as a misdiagnosis in 1995, [which persisted for approximately 7 years], by 3 GPs as Menopausal Palpitations, with the advice that nothing could be done. AF was never considered at any stage during this initial 7 years, which eventually led to my having a myocardial infarction (MI) in September 2002, several months after my 50th birthday on 29 June 2002.

Following that heart attack, I was finally diagnosed with AF, which had by that stage turned chronic, I underwent an Ablation procedure with Dr Weerasooiya in June 2003, which returned me to normal sinus rhythm; this only lasted about 6 days after which the AF returned.

My experience living with chronic AF was somewhat of an “unpleasant continual feeling of nausea”, coupled with general tiredness but never able to sleep very well at all. I also found walking up inclines or stairs etc very tiring, with my legs feeling like lead weights.

In February 2017, after about 14 years of living with the AF, and trying to control my blood pressure etc with medication, I sought out Prof Weerasooiya for a review, to see if any new research had emerged that might help with the chronic AF I was suffering. Again, I underwent an extended ablation procedure with an updated technique and equipment. Again this failed to cure the AF, but before undergoing the second procedure I had been made fully aware that after all the time it had been chronic, that it was unlikely the procedure would be  successful. While having this second procedure Prof Weerasooiya discovered another arrythmia in my heart, and prescribed a new medication for me to take to help control this arrythmia.

Within 24 hours of this second ablation, (and after leaving the hospital), I noticed my vision had been negatively affected, specifically that the colour from my world had gone, and I was very disorientated. I put this down to effects from the general anaesthetic used for the ablation; Prof Weerasooyia had advised I was under the anaesthetic for quite an extended period during the ablation. In terms of my vision everything was a grey shimmery colour (similar to the effect experienced when dilation drops are used in the eyes). Prof Weerasoiya advised me I was having a reaction to the new medication with regards to my sight, and to cease the medication he had recently prescribed for me.

Over the next 18 months, the general disorientation and unfamiliarity with my surroundings continued. My vision slowly improved and some colour returned, but not to my pre-ablation state – only about 75% of the colour returned. Of course this is only a guess on my behalf, but I know the world is a much duller place than it was before!  Nobody seemed to be able to say how long the drug would take to leave my system. After lots of frustration, and eye checks etc, eventually an ophthalmologist questioned me “When did you have your stroke”? I looked at him amazement, saying I wasn’t aware I had had a stroke. He then told me I had lost vision in both eyes in the top part of my range. Thankfully, that part of vision is not crucial to your vision for driving! He then arranged an MRI, to confirm his findings, which clearly showed a past bleed on the optic nerve.

The MRI also showed another scar from a second bleed within the movement area of the brain, which then explained a fall I had had about 2 years previous. I was walking along a pathway, had stepped over a low obstacle in my way, taken a couple more steps, when my feet & legs just appeared not to work! I could not step forward and fell face down on the bitumen path.I was able to stand up straight away and continued on walking, talking etc and then continued on with my daily life with no other problems. A stroke never crossed my mind, but with hindsight I am certain that is when it occurred. A third bleed was explained as deep within the gray matter, and being in shock with the results of the MRI, I didn’t think at the time to ask if this should have affected me in anyway. I was certainly not suffering from it, and I am unaware of when this stroke occurred.

During a follow up consult with Prof Weerasooyia, he confirmed that the optic nerve stroke would have been directly from him performing the second ablation in February 2017, from his “poking around in there” (the heart) as he described it!

After confirmation of these strokes, I was made very much aware of how my future was headed for a diagnosis of Vascular Dementia. I was very aware of this, as my older sister had been diagnosed with Alzheimers in 2007. I always believed it was Vascular Dementia, as she had endured three cardiac arrests at the age of 48. She never had an MRI to confirm the dementia, unfortunately.

In November 2018,  I was informed by Prof Weerasooiya there was now available a procedure, performed through the thorax, called Left Appendage Atriclip Occlusion. This was not a new procedure in itself, but was only performed when there was a need for open heart surgery. He advised this new way of performing the procedure was going to be the only way to help try and prevent future strokes and stop the vascular dementia from setting in! I didn’t believe there was much soul searching to be done! I opted for the procedure to be done ASAP!!

In December 2018, I underwent the procedure itself, thru the ribs, with three small cuts for the equipment and clip itself to be inserted through. I had to have a general anaesthetic, which from memory lasted about an hour and a half. The recovery from the whole procedure was an overnight stay in hospital and relatively pain free, apart from some general soreness within the rib area. I did not have any healing problems at all.

In December 2019, I underwent an ultrasound, and then a TOE procedure to check that the clip was in the correct position still and had obtained the desired result of closing off the left appendage. The TOE confirmed that all was good, appendage gone and clip in place sealing off the left atrial.

In May 2020 I had a fall and hit my head on the bed side table, knocking me unconscious and having a seizure. I underwent a CT & MRI to rule out the possibility of having had another stroke, but there were no new bleeds showing since the insertion of the Atriclip. Such good news! Proof for myself that the procedure is working.

In the period since my seizure in May 2020 I have had an EEG and consulted with a neurologist, who confirmed that the electrical system of the brain is being interrupted by the scar tissue from one of the strokes and is causing rogue electrical currents to fire off, causing the seizure. I now have medication to help with this and have to be seizure free for 6 months before I can drive again! Roll on November 2020!!

In conclusion, I whole heartedly recommend that the Left Appendage Atriclip Occlusion be included available in Private Hospitals. It is such an easy, relatively risk free procedure, which has been proven to work. It should be made available to all Australian citizens, not only those that are fortunate enough to be able to afford private cover. The cost of the procedure is far less than the costs involved in the rehabilitation and continued care required when a person is severely incapacitated by a stroke which the Left Appendage Atriclip Occlusion could have prevented.