There are times when I wonder if I have been transported to an alternative universe. Or whether I am actually being stirred within the confines of a witch's cauldron, along with eye of newt and toe of frog, part of some grotesque spell over which I have no control. I have caught myself questioning conversations I've had, information I've been given and decisions that I've made on the basis of this knowledge, only to ponder contradictions that imply I have misheard or been mistaken.
Which I bloody well haven't. I may sixty-three but there is absolutely nothing wrong with my recall or interpretation. I have been flung from pillar to post like a pinball in a bizarre game of fantasy versus reality. For eighteen months, I have sought to find the basis of my debilitating breathlessness and explain the unrelenting exhaustion.
I have given volumes of my health history to various medicos. I have searched the inner recesses of my memory for clues. In doing so, I have been gifted snippets that have added to my overall understanding. Unexpectedly, I have unearthed a possible cause of my obesity. I remember Mum telling me how she used to add extra formula to my feeds so I would sleep more. She was so very proud of her cleverness. As a result, I slept through the night before I was four weeks old and developed severe excema and an egg allergy as a result. From then on, I was prone to chubbiness.
I have swung from constipation to diarrohoea and back again all my life. Tummy upsets were a miserable night time companion which led to teenage insomnia. During my thirties, I found the only lasting solution to weight gain was to exercise, which led to my ten year career of running, pounding the pavements around Karrinyup. Exercise was also a panacea to my first not-terribly-satisfactory marriage, leaving my troubles behind as I entered into a rhythmic mediation with my dog. Only when I stopped running, having developed knee and ankle pain did I slow down to walking, and my weight increased once more.
I was still able to walk for fitness until September 2023. I had discovered the absolute majesty of the Outback, the thrill of fossicking and the adventures Michael and I shared. I had walked through the Kennedy Ranges from the camp to Honeycomb Gorge and back, completely underestimating the distance, which was over six kilometres return. I remember being tired and triumphant on my return but definitely not breathless in any way, shape or form. We climbed all over Walga Rock, tramped around the Mt Augustus ground tracks and explored endless square kilometres of abandoned tips, towns and mining sites. That is what I want to experience again...
The only doctor who has my unconditional trust is our respiratory specialist Scott Claxton. I have seen various cardiologists over the years, one completely useless who missed my Atrial Septal Defect (ASD), one who saw the ASD and didn't tell me and the latest, recommended by Scott, who keeps changing her tune and clouding previous conversations with contradictory statements.
This cardiac guru has caused me uncertainty and anxiety, as I was confident in Scott's judgement. During our first consultation, she stated, loud and clear, that my ASD had caused the Pulmonary Hypertension. I was so surprised at her candour that I asked her to repeat this statement. Which she did - word for word. After the TOE (transoesophogeal echocardiogram), she wrote in my discharge summary that there had been no complications and I had tolerated the procedure well. What she related to me was that I had stopped breathing, the theatre nurse didn't have the strength to hold my jaw open, a doctor had to step in to keep my airway open and they nearly chose to bail out of the test.
I did not receive this information until four hours later. She told me my sleep apnoea was uncontrolled and that I was in her "top five worst patients". The sleep apnoea therapists I see have taken umbrage at these comments, noting my sleep apnoea is completely controlled by CPAP and that I only stop breathing if unsupported.
All I knew, waking up after the TOE, is that some awful event had occurred. I was very breathless, in pain and distraught for several hours with zero understanding. My follow-up appointment with her was last Thursday. She denied ever saying that the ASD had caused the pulmonary hypertension and that my breathlessness was multifactorial and probably mostly due to my "uncontrolled" sleep apnoea. She also surmised that closing my ASD probably "wouldn't help much now" but was a useful "preventative" measure as I continue to age. So much for expert advice. At least we were only out of pocket for less than one hundred dollars...
To say I am furious, confused and frustrated is the understatement of the century. In spite of her change of mind, she still added another beta blocker to my regime that treats heart failure and referred me to a cardiac surgeon. She also mentioned bariatric surgery as a solution to my weight, noting our health fund would cover that operation ...Ye Gods.
So, next week brings another appointment. I have emailed the cardiac surgeon with my relevant medical history, hopefully saving time when I see her. Whether she reads my email or not is entirely another matter. I just want to have opportunity to ask all the questions that matter to me. So I can make informed decisions. Wish me luck on that endeavour...
In the meantime, I am trying to FOCUS on what I know to be true and real. Our family, our friends, our home, our fur and feathered babies and our Gallery. I have retreated into this protective space to breathe, rest and rally for the next round.
Our first Saturday Sundowner in 2025 was an absolute blast, in spite of having very few guests other than our musicians. Did they care? Not at all. They were too busy having fun.
Sunday saw our friends Di and Steve, along with Brynn their border collie, join us for lunch, bringing three hilarious clay farm animals to add to the Gallery. Betty and Rowan, musos and artists, joined us as well, whilst husband and Dad Craig attended a charcoals workshop at the Station with Artist-in-Residence Lorraine.
Yesterday, a public holiday, still welcomed nearly twenty guests, both new and repeat offenders, to the Gallery, My executive officer, Mizz Sue, handled the Gallery with her usual efficiency and aplomb.
Today is a beautifully cool early autumn day. The garden is grateful, the dogs are snoozing, the parrot is quiet (!), the cat has left the building, Michael is happy with his latest piece and I will be catching up with household jobs. Much to my surprise, I am relishing this opportunity for a slow home day.
Maybe I am slightly bonkers. All the best people are...
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