2024 has already become synonymous with some pretty weird twists and turns adding excitement to our rather action-packed lives. We are only just over half way through February and I am wondering, once more, what else the universe could have in store for us...
We started the year with two absolutely spectacular wins. Think the Big 4 banks are immovable? Think again. After three months of financial stress, woeful customer service, exposure of appalling bank practices and a vast miasma of misinformation and misdirection, we applied to the Australian Financial Complaints Authority (AFCA) to examine our case. An offer for compensation appeared faster than a speeding bullet. Would I tackle one of these juggernauts again? Yep, by going directly to the AFCA, rather than farting around with an organisation unwilling to assist a customer.
Then, there was my battle with the NDIA/S over eleven months to be reimbursed for the purchase of Alex's CPAP machine, which we tackled as improving his daily functionality, reducing his anxiety and allow him to live safely in his own home by having restful sleep. In addition, we wanted to access Alex's existing funding for this refund of $1694, not more funding.
Eleven months of stalling, squirming, and stymieing. We were repeatedly told we needed to have three internal reviews before applying to the Administrative Appeals Tribunal (AAT). We were caught in a web of Chinese Whispers where even Alex's Local Area Coordinator (LAC) was confused and misled. That assertion about the number of internal reviews - total fiction.
Eventually, we applied to the AAT in December. We were set for our first meeting with the AAT on 15 January to discuss the process. I had been warned that the Tribunal did not move quickly and their decision could take up to a year to deliver. Surprisingly, I was comfortable with the concept of waiting.
Out of the blue came an offer from the NDIA. An offer to reimburse $1694 for Alex's CPAP machine. Golly gosh. We accepted with alacrity. Needless to say, the actual payment took as long as pulling a tooth out with a piece of string. Two days before I was due to speak to an AAT lawyer, the refund lobbed quietly into our account.
The whole episode was handled like two blokes in sweaty suits passing a money in a grubby brown paper bag under the dashboard. We were not offered a receipt. The payment was directly from the NDIA without touching Alex's funding. No paperwork, no trail.
I would love to believe the NDIA had a change of heart. Unfortunately, our refund was all about economics. Payment for Alex's reasonable needs versus the cost of a NDIA lawyer for one day. I didn't have to be a rocket scientist to work that one out.
I have always believed that knowledge is power. I want to know the truth. I want the details so I understand and can make informed decisions. I also dislike not being taken seriously when I know otherwise.
Thirty years ago, I was involved in a quest of a diagnosis for Alex. Hyperactivity with developmental delay didn't quite cut it. We kept seeing specialists, accruing more information, trying different treatments, supporting the skills he had. ABA therapy, which we began when Alex was four years old, was, for us, a miracle. We knew he was going to do well. We knew he had normal intelligence. And in November 1995, Alex was diagnosed with Autism. I was triumphant for about five minutes. Then I cried for eight weeks.
Fast forward to recent times. Alex was finally diagnosed with an Acquired Brain Injury in 2022, which most likely occurred after cardiac surgery when he was seventeen months old. Thirty years of being disbelieved was sorted by a Neurosciences assessment and one MRI. Once more, I was elated. And I was livid with rage for all that lost time.
Now we come to the crux of this post. Last year, I had a mild dose of COVID. Mild because our doctor put me on anti-virals immediately. My symptoms mimicked a bad cold. Seven days later, I tested negative and returned to the usual circus of our lives. But what was COVID's possible legacy?
In early October, I started becoming breathless. When this unpleasant issue didn't pass, I saw our GP. Apparently, I had some sort of odd lung inflammation and I was gathering fluid around my lungs. Antibiotics really didn't help. And then, I boarded the merry-go-round of tests and specialists. Chest X-ray, chest CT, ECG, Echocardiogram, exercise test, bloods and a Doppler to look for blockages. Discovery of two heart defects I'd had from birth. A couple of leaky valves that are currently non-problematic. A cardiologist with a poor bedside manner who did not impart any findings I so desperately craved.
My final port of call was to visit Scott Claxton, who is both Alex's and Michael's respiratory specialist. We first met Scott in 2014 whilst Michael was treated for double pneumonia in Joondalup Hospital. Scott is approachable, compassionate, thorough and crystal clear. However, I was still expecting to be told I was just a fat. lazy, anxious woman who needed a kick in the pants.
The appointment with Scott was last Friday. Michael was also seeing Scott for a review and general check. Scott knows Michael's lungs very well indeed. The mere mention of Michael's throat infection that was not responding to standard antibiotics sent Scott reaching for his prescription pad for stronger antibiotics.
Then, very matter-of-factly, Scott explained that I have Pulmonary Hypertension. High pressure in the arteries going from the heart to the lungs means the heart has to pump harder. Then Scott explained that he believed this diagnosis to be a symptom of another condition. This afternoon, I undertook a nuclear medicine appointment this afternoon to look at pressure in the arteries, the lungs and check for a pesky embolus that may be lurking, contributing to my breathlessness. Plus blood tests. We finally set off for home just before six o'clock.
I am researching conditions associated with Pulmonary Hypertension. This is not particularly positive reading. And I am dealing with the realisation that I have developed a chronic and potentially fatal health disorder. I don't think I was quite ready for this news. Hmmm...
How am I going to deal with this latest revelation? Do as I usually do. Seek knowledge. Make informed decisions. Never give up...
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