Fear of losing someone you love does that to a person.
You see, just a few weeks ago, something odd happened. I sent my husband Shane a couple of messages and he didn’t respond. As I drove home from work, I called again and he finally answered. After prattling on about my day I asked him how his had been. He mumbled something about not feeling well at work and how he’d gone to the doctor.
Oh, and that he’d been scheduled for a brain scan the next day.
The author Alicia Larriera and husband Shane Purcell.
“It’s nothing,” he said.
“I’m fine. It’s just a check-up because of a headache.”
Later that night, all seemed as it should be. Details were vague on just what he had meant by not feeling well, but he had had an intense week, not only at work but with late-night social events as well, and he was probably just tired.
The next morning I awoke to find him sitting at the dining table with referral letters, ringing specialists to book appointments.
I grab the letters. I read. I have to sit down because I am shaking and feel like I’m going to pass out. There are words including “loss of feeling and control in left limbs”. “Suspected TIA” (transient ischemic attack) jumps out at me.
My former working life means I know exactly what that means … it’s the precursor to a stroke.
Now, my husband is only 48. Fit. Not overweight. He’s never smoked, his alcohol intake is minimal and he’s never taken a party drug in his life. His cholesterol is low, and his blood pressure is normal.
“This can’t be happening,” I think. But it is. He tells me he didn’t want to worry me; that he wanted to get the results first.
He insists on going to the brain scan on his own, and his GP has told him there is no problem in him going back to work. Seriously?
One of the tests he needs to undergo is to check for blockages in his carotid arteries. Despite the fact we’re clutching a referral letter marked “urgent” from the GP, the Vascular Laboratory insists that seven days hence is the earliest they can fit him in.
We read up on the condition with increasing dread.
We talk to friends with first-hand experience of the condition. My best friend’s mother had a massive stroke, something which could have been avoided had the doctors thought to refer her for a test of the state of her carotid arteries.
It becomes apparent that in one in 10 cases of TIA, a stroke will follow; for 50 percent of those afflicted the stroke will come within 48 hours of the attack. There are many reputable medical sites talking of the need for hospitalisation to monitor the condition and conduct all the tests.
Why the hell is my husband being advised to go back to work?
The alarm bells in my head are now deafening. My husband calls the GP to express his concerns that he can’t be seen for a week, and asks is there anything he can do to let the lab know urgent means urgent. He is told there will be a call back. It never comes.
Taking the matter into my own hands, I hit the phones, determined that I will not take no for an answer from anyone. Urgent is urgent, one would have thought.
What followed were two hours of waiting for a promised call to see if the GP could secure him an earlier appointment, followed by four hours of intensive calls back and forth refusing to take no for answer.
In the end I call up the Vascular Laboratory to have what turns out to be one of the most extraordinary conversations of my life.
I try to explain the situation and argue that it’s not acceptable that an urgent referral means an appointment seven days after the TIA attack.
The clinic says procedures must be followed.
“We have the letter,” I say. “It says what it says. Are you suggesting he’ll turn up and what we say is happening is not happening?”
“We’re just following procedures,” the woman on the other end says.
I try a different tack. I explain my husband works at a hospital.
“Well if it was my husband, and it was supposedly so urgent, and you’re so worried, then why aren’t you taking him to the hospital there,” she sarcastically replies.
The implication that I am lying about my husband’s condition is jaw-droppingly outrageous.
And so, on and on goes the idiotic, unprofessional response to someone fighting for their partner’s right to gain an appointment. Nothing more, nothing less.
In the meantime I ring another hospital, ask for the nearest vascular laboratory and am directed to the one attached to St George Private Hospital. After a two-minute conversation, my husband has an appointment scheduled just an hour later.
I spend the next four hours back and forth checking referrals, organising appointments, tracking down an excellent specialist and making an appointment in advance.
I essentially map out what is a diagnosis plan for him.
I am not a doctor, nor a health professional in any way. Surely his doctor should be doing this? How do those without the resources, time or personality of a pit bull when needed (guilty as charged) negotiate their way through a crisis like this?
The 48-hour mark has passed. The brain scan shows no sign of bleeding on his brain. The build up in one carotid artery has started but at the moment it is slight. The GP won’t make an appointment to see us until all the test results are back. Obviously keeping my husband informed isn’t a legitimate reason for an appointment.
The St George Vascular Laboratory can’t believe he was advised to go back to work. Time to kick back and relax, they advise. Get all your tests done. Get some answers. Get a treatment plan in place.
The GP finally called to apologise for the “confusion” over the tests. Still on my to-do list: shop for a new GP.
PS: The heart tests all came back showing no issue. On May 22, more than 6 weeks after the TIA, Shane is scheduled to meet with a neurologist, one we had to track down ourselves.
PPS: We flew out the next week for a three-week holiday to the US. Not a hope of obtaining health insurance for Shane for any incident related to a TIA or heart attack (despite the fact all tests have shown his heart to be in perfect nick). This is the ongoing legacy of not being referred to hospital as he should have, where all tests would have been conducted within 48 hours. Having only met with a neurologist yesterday (a near record as there’s usually a six month waiting list), we now learn that with the TIA having happened well over a month ago, there is absolutely no way of determining the cause – something which should have happened in the first 48 hours. The insurance companies argue as the cause is not identified it is a pre-existing condition with too many risks for them to take on. Imagine if anything had happened on our travels.
TIA WARNING SIGNS (from the Mayo Clinic)
Transient ischemic attacks usually last a few minutes. Most signs and symptoms disappear within an hour. The signs and symptoms of TIA resemble those found early in a stroke and may include:
When to see a doctor
Seek immediate medical attention if you suspect you’ve had a transient ischemic attack. Prompt evaluation and identification of potentially treatable conditions may help you prevent a stroke.
*After spending 13 years with The Sydney Morning Herald reporting on everything from the best gelato in Sydney, to industrial relations, state politics and health rounds, Alicia Larriera switched from print to TV and worked on ABC’s Lateline as a researcher/producer. Defying her Gen X status and acting like a Gen Y, she then decided to grow up to be an event designer and manager. For the past 13 years she has operated her business Form Over Function from the coast south of Sydney and Surry Hills, creating events for corporate, private and wedding clients. Alicia lives in a coastal hamlet south of Sydney with her husband Shane, and two very beloved cats.
7 Responses
I worked in the health profession for twenty-four years and I can say in all honesty that in todays health service every sick person absolutely needs an advocate with them who won’t take no for an answer.
I didn’t particularly like the phrase “pesonality of a pit bull”- I get what Alicia is trying to say but it’s just perpetuating the myth that they are vicious and overly tenacious dogs…
Anyway!
I found this fascinating, as I’d never heard of TIA before. Pretty scary but good to know that if you’re aware of the signs you can seek immediate help. Reassuring stuff, really. Also it’s great that Shane went to his doctor immediately. Far too often you hear of men being a bit stubborn or dismissive of their health and it can be hard to convince them to seek medical help when needed. Kudos to him for getting checked out.
It’s a real worry that sometimes our health care system leaves so much to be desired. There’s too many stories like this out there, and I can only assume it’s due mostly to the need for more funding. Doctors, nurses etc can only work so many hours and do so much before they are overworked and constrained by system. Also: ARGHHHH at insurance companies!
Glad to know that Shane is okay after all of that though. Great work Alicia
and thanks for sharing your story, I’ve taken a few lessons away from it.
I certainly hope I wasn’t implying I was being vicious! Tenacious, and not willing to let go, yes, vicious no
Perfectly good qualities to possess at times. Offending pit bulls furtherest thing from my mind! Thanks for the lovely feedback. Resources are definitely an issue – an ongoing conundrum for governments of all hues – but funding is not the issue with a receptionist missing the empathy/deceny gene, or a GP who has become so bored with his lot in life that he doesn’t make the referals he knows he should, nor take on the care plan responsbilities he should. Wish I had the answers on how to make things better, but being vigilant about our own health, and that of those close to us, is the lesson I took away from this.
Sorry Alicia, I just love pit bulls and it makes me sad when they are made out to be ‘bad dogs’, that’s all! It’s not so much that you implied it, as what others can read into it, does that makes sense? Anyhoo, I hope I didn’t detract from my other comments about this article being great on a number of levels. I think it’s one of the best I’ve read in a long time!
I too cannot get my head around the lack of compassion or basic level of service from the receptionist and the GP. Frankly it’s the reason why I’ve sometimes not gone to the doctor when I should have- and I’ve had so many friends with ongoing stomach complaints and whatnot that could be any number of things, but they never seem to be actually diagnosed. And that is one reason why so many people don’t seek medical help, it feels like a waste of time. So again that is why I found it so positive that your husband went and got checked out. Even though it wasn’t the best process I suppose at least he got there in the end and was thankfully one of the lucky ones. I dread to think how many people would just write it off as a temporary ill, and suffer for it down the track.
You’ve prompted me to do something about my boyfriends persistent cough. It’s been worrying me for a while but he pretty much has a degree in procrastinating. I think I am going to have to get it seen to myself. So thanks again for the article
Alicia – props to you for your tenacity. I have worked in health for nearly 20 years and find myself advocating for my elderly Mum. Mum laid in a hospital bed for 4 days with a broken leg and multiple theatre cancellations in agony. I too, would not take no for an answer. The problem is that too many people have to do this. I am a great believer that people need a navigator through the health system. Good wishes to you & your husband
I am a long-time RN with many years of experience in both the public and private health sector, and I have to say that the vast differences between individual health practitioners is quite a revelation. In all areas you have the most and the least empathetic of individuals – some who will go the extra mile for a patient in need, and those who obviously don’t give more than a cursory nod in that direction. So you do have to stand up for yourself on some occasions and insist that you be taken seriously, and be prepared to change practitioner if necessary.
Of course, one of the biggest problems we face is the fact that the whole health care system is in the process of becoming overwhelmed by the sheer volume of work that is coming its way. We have public hospitals with long waiting lists, crowded emergency departments, outpatient clinics which can’t keep up with demand for services, and the private sector is not in much better shape. And it will get worse as society ages, obesity grows, and chronic disease affects more and more of the population.
sami ….you are so “precious” that is an aussie saying to descibe someone who doesnt give up….Political Correctness is destroying our society