Sunday, 22 April 2012

Blood of the Very Best Kind

See this guy with me here?

I like him a lot. So much so, I’ve shared my life with him for over twenty years. We met at high school, on my 15th birthday. These days, we also share three young sons, two dogs and a big ol’ happy home. 

 We’ve had some amazing adventures together: dived shipwrecks in the seas surrounding the Solomon Islands, dodged sharks up and down the east coast of Australia, we’ve skydived over Port Phillip Heads, white water rafted in Cairns. We’ve eaten snails and frog’s legs in Singapore, goat souvlaki at the Caldera on Santorini and partied way too hard on Mykonos. We’ve owned businesses, spending 24 hours a day, 7 days a week together for months on end, grown to appreciate the other’s passions – I learned to dive, he still won’t read, but he does listen to my stories. We love each other’s extended families and he builds the bookshelves that I shop to fill. We’ve shared every momentous occasion of our lives together, every celebration and every moment of grief. We’ve created three amazing humans and we’ve nursed family members through smashed (and amputated) limbs and terminal disease.

Which kind of brings me to my point. He’s sick. Not terminally sick – but sick enough that our lives have taken a huge punch to the gut. After an infection last year, he contracted a rare autoimmune disorder; so rare, only about 12 people in Australia per year get it. His immune system is eating his peripheral nervous system. So far, it’s only dining out on his hands, forearms, feet and face. That was entree. Without treatment, the disorder’s main course will be devouring his ability to walk, and his heart and lungs could wind up as dessert. And that would be bad. Very, very bad. The good news is, while it’s not quite curable, the gobbling up process can be slowed down, maybe even stopped with the correct treatment. It will involve spending 3 to 5 days in hospital every fortnight to month, a long way from home. This new adventure begins in a bit over a week. He’ll be pumped full of fabulous stuff called Intragam (brand name) via drip. It’s also known as Immunoglobulin treatment or IVIg. Intragam is a blood product, made from the treated plasma of donated blood. It will take blood donations from between eight and eighteen thousand people a year to keep him well. In case you missed that...yes, eighteen THOUSAND. This stuff is worth nearly double the price of gold per gram. I shit you not. And he needs about 140 grams per treatment.

Right now, with all of my being, I’m thanking the Universe we live in Australia.

Obviously, for a product like Intragam, there’s a lot of boxes that need to be ticked before you’re allowed to have it. There’s protocol, systems in place so that only the most needy are given this wonderful stuff; it can’t just be handed out willy-nilly. Luckily (or maybe that’s unluckily?), there’s been no question of my husband’s need, in fact he’s been fast-tracked for treatment. But, like all good things, there’s a problem - other than the fistful of side-effects.

There’s not enough of it to go round.

This of course, is just one of the things that drives the cost of Intragam. Not enough people are willing, or have the time or thought to give up a couple of hours, 3 or 4 times a year to give blood. Yeah, I admit it, it’s about 15 years since I donated blood. But you can bet I’ll be donating as often as possible from now on. Blood donations are not only used whole for accident victims or patients in surgery. Your single donation of scarlet liquid goodness is often split up, treated, and sent to help three different patients. The products derived from your blood may just help someone who is undergoing chemotherapy, kidney dialysis, or a disease that screws up the clotting mechanism, someone who has any number of blood or immunity disorders. Anyone can be in our position, relying on the generosity of other people to share something so precious, it can’t possibly have a price tag.

All it took for Simon was a small bump to the elbow to set this thing off.
 If you’re able, please consider donating blood.
Thank you.

**PS – Once my beloved has had a number of successful treatments without side effects, we’ve agreed to be guinea pigs in a clinical trial. I’ll be trained to administer his treatment from home, in smaller does once a week. If the trial is successful, it could save the health system millions of dollars per year and free up a few much needed hospital beds. Plus, I get to play nurse and stick him with needles and blood goodies and tape that will rip the hair from his chest.


  1. Dear Mandy
    Thanks for sharing this; your family are having a lot to go through. But it sounds like there is a treatment. What is the condition and where is Simon being treated?

    Thinking of you lots.

  2. Hi Anne (that is Anne, isn't it? Hiding behind the kitty cat?)
    Simon has CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. It's the chronic form of Guillain-Barre Syndrome. He's being treated by the most incredible team of neurologists up at St Vincents in Melbourne.
    Thanks so much for your good wishes. xx

  3. Mandy, Well...reading your blog about Simon and your love for him almost brought me to tears!! I have always been under the impression that because of some of the medication I take I would be unsuitable for donating blood, but I just checked the site and found out that maybe I've been wrong. So, next visit to the Dr I will be asking him about my suitability (plus I have to wait until the 6 month waiting period since my last tattoo). I figure if I can mount up the guts to jump out of a plane to tandem sky dive, then I can face up to handing over the "claret". Love the honesty of your and best wishes to you and yours. xx

  4. Naww, thanks Deb. I reckon if you can sky dive and get a tattoo, giving blood isn't even a challenge! Thank you for taking the time to check the Blood Bank's website for your suitability. I'm sure your 'claret' will be much appreciated if you're able!

  5. Mandy, I've just made an appointment to donate blood this Friday and plan to become a regular donor. Who knows, some of my red stuff might end up in Simon. And then where will he be, with a wife at home ripping hairs from his chest and the blood of her sister crime writers flowing through his veins...

    Great blog post and brilliant call to action. Love and courage to you and Simon both.

    1. I always gave blood in my native England. It was something I could do that made me feel good, helped others and took little effort. I recruited many people along the way and my blood donor obsession was always mentioned in leaving speeches whenever I changed jobs. Sadly, I am unable to donate here in Australia. Despite the fact that I was a vegetarian for many years in the UK, Australia has banned donations from former residents in case we have contracted BSE (Mad Cow Disease). My husband thinks I am already a mad cow, but that's another story. I am quietly burning with rage at this decision, and have been for ten years, but unfortunately, that's the way it is.

      Good luck on your journey Simon and Amanda and I hope you come across plenty of willing people on the way.

  6. Made my first blood donation last week in Simon's honour. Going to try for plasma next. It takes a bit longer but they can make more Intragam from one donation of plasma, plus you can donate more often. Worth looking into...

  7. Angela, I can't wait to hug you! Thank you so very much. Over three days this week, Simon had litres of IVIg pumped into him, thanks to people like you. *This* is what being a hero is all about. xxx