Tuesday, February 10, 2015

Where's my death-march gone?

Ian's reaction to me being in labour - fast asleep in the corner of the delivery room! 

John turns 4 tomorrow. 

The lead-up to his birthday has usually marked the beginning of my 4 month long death-march, as the surgery that triggered Ian's complications and eventual death occurred just 11 days after John's first birthday (and coincidently, John's original due date, so 22nd February is a really solid date in my memory). 

The first couple of years, the surgery date has been very significant, and was completely unexpected the first year.

But I'm not having that death-march feeling yet: the heaviness, the out-of-sorts-ness, the feeling of dread.  And it's feeling almost odd.

I can only put it down to the fact late last year I got answers to my questions around the surgery, and get further information on the wider impact from Ian's illness and death a while prior.

While he was sick, there was a lot of talk about writing up his case for medical journals.  After he died,  I gave permission for the key organs to be kept for teaching and research purposes (which I had assumed had happened, but didn't) - a decision that was so easy to make since he willingly put his hand up to participate in both medical teaching and research projects.   Plus, there were lots of things I had questions on in terms of leading up to, and the decision to proceed with, the surgery at the time it happened.  I wanted to know what had progressed or changed in the time since.

Malpractice suits are not common in Australia, and notoriously difficult to win, so I wasn't going to go down that path. There's not really even a tradition of 'go away' (to put it politely) settlement payouts.   But I did use the systems available to put the questions I had to the surgeon and health department through a third party.

The surgeon's response to many of my questions was full of 'he said/she said' that I reached the point of it's not worth further fighting over, a fight I most likely won't be successful with.  Plus, I suspect that although he won't admit it, Ian's case had a significant personal and professional practice impact on the surgeon.

It was confirmed, no matter what, Ian was going to need the surgery at some point - whether it happened at the time it did or later.  And that was based on Ian's own dedication to his own health (or lack there-of, something I had already suspected).  In all reality, it's probably a case of not being IF I could have avoided widowhood, but WHEN I faced it.

In another direction, my questions have triggered a look at changing autopsy permissions and information provided to families so that the process, and family's intent, are understood from both sides.  And any permissions by the family for donations for teaching or research happen whether or not there is an autopsy.

I know his case has been written up in a couple of journals so far, so it's accessible to practitioners and researchers globally.

And by pure chance, I've heard the technique they used to solve Ian's initial medical problem worked successfully on someone since.  Ian was the 10th reported case.  It had only worked on one other case prior to his, however the technique worked on Ian too, but there was just too much else going on for long-term survival. But it looks like they've learned enough to get others through.

Although Ian not being here is something I'd really rather not be living with, the fact that I've been able to push for changes and his case is leading to review and hopefully improvement of  practices in a number of areas has really helped me to keep living my life as it is now. 

And will hopefully lessen the duration of the death march I experience year on year, even if only a little.

1 comment:

  1. It's so impressive that you've pushed for answers, as well as changes in the processes and the laws. Your strength and persistence is inspiring.