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.
**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.