A post for a friend I haven't met

You might say I’m writing this for a friend.

Call it an awareness thing. I’m not competent to diagnose my friend’s condition, but I know how difficult it can be if your body decides to lay out a puzzler for the experts. So here’s the early history of Ms T’s condition, as always related with her permission.

Disclaimer: yes, I have told some of this in a disjointed way, before. This is more linear timeline, with a specific purpose. I won’t be offended if you skip over it.

The reason we want to set this on the record is to illustrate how, with a rare condition, the symptoms can deceive.

Ms T’s condition is the immune system disorder known as vasculitis. The immune system – I guess it’s the T-cells because they’re on the list of “things we look for in blood tests” – has decided to nuke her blood vessels.

That’s not particularly common, but there’s more. In my limited understanding, vasculitis typically starts with things like capillaries – there are some typical symptoms, purpling near the skin and so on. Ms T’s started with major arteries: one carotid, the celiac artery, one renal artery.

The celiac artery was the one that delivered the symptoms that got us a diagnosis. The rest ran under the radar at the time. And the symptoms didn’t actually point to the cause.

What happened – nearly three years ago now – was that her stomach shut down. Between January and March, she went from steak-after-bushwalks (15 km was a good day) to not eating (because every attempt ended in pain), and only able to walk with assistance. We tried a walk in February to see if her appetite would recover; I carried her he 200 meters back.

Yes, we were seeing the doctor. After several visits and nothing working, he referred us for imaging. The clinic had a six-week waiting list.

So we waited.

Things got moving once the specialist took a look. Ms T couldn’t eat because there wasn’t stomach there, just ulcer. So with the specialist speaking kind of urgently down the phone, the imagers waived the waiting list and opened early the next day for an CRT (or was it an MRI? Anyhow, a big machine that takes pictures).

The next day we were in hospital – and still running with the wrong diagnosis (a rare liver cancer).

So: most of Ms T’s condition was (externally) asymptomatic – the extent of damage was only revealed by imaging. Here only symptoms where symptoms not of vasculitis, but of the collateral damage.

Now, I could make a political point of this, something about the state of the health system, public versus private, blah blah blah. Once in the hands of the public specialists of RPA, I’ve got nothing but good things to say. Others have a different experience; I’m not responsible for that, nor am I going to change my report.

What I’m relating is how difficult a diagnosis can be if you have a rare disease. The GP got it wrong; the first specialist got it wrong. RPA – with six specialists taking their shot over nine weeks – ended up with a coin toss, vasculitis or endocarditis.

There simply isn’t an easy test. We tossed the coin the right way. She lived. Rough, but alive. We have the chemo, but right now it’s going in through a vein, which is roughly that we’re killing the T-cells from a safe distance and the side-effects are manageable.

The point of this story?

Right now, someone I know only on Twitter is threading through the labyrinth of mysteries. It won’t be the same thing as Ms T, unless the universe is throwing up the kind of thundering coincidence that makes you throw aside a whodunit in disgust.

But if something is taking months to work out, I’ll place a small side bet on “rare”. And if it’s not racing ahead, I’ll place a much smaller bet on “not cancer” and hope I’m right. But this difficult, I’ll guess that my Twitter followee is on the long road down rare chronic illness.

I hope not. I hope it turns out to be easy and innocuous and temporary.

If not, there’s good news and bad.

The bad is that it’s a very, very rough road.

The good is that many, many of us will stand alongside you. One last story in this overly long post.

In the darkest days – when Ms T was about 35 kg, we were still waiting for the first round of imaging, and I was watching her die – the previous owner of Bunjaree Cottages (which we now operate as our labour of love) gave us a free weekend in a cottage. We’d missed a regular booking, she phone, I told the story, and bingo.

That wasn’t all.

She also gave some life-saving advice – she’s a trained nurse – that kept Ms T going long enough. Just. She suggested something that was revolting, but extremely nutritious in small amounts. Ms T’s weight bottomed out at 31 kg, but she lived. Mrs A – the nurse – had experienced catastrophic weight loss before.

Right now, I can only pass on support and advice. But any of us in the same world are here to help, whether it’s moral, practical, whatever. Because governments aren’t helping: we only have each other.

Go well, Ms C. Our thoughts go with you.