Someone get me off this Iron Seesaw
Haemochromatosis: An inherited genetic condition where the body absorbs iron at a greater rate than normal, that if left untreated results in damage of organs such as the liver, heart, and pancreas.
It’s in my genes. It’s not going anywhere.
It’s something I’ve had to monitor, like a hawk, for the last 11 years. I spent parts of my uni degree diving into information and going to conferences to try and piece together what was going on, in a format that was easy for people (me) to consume. I’m not afraid to look up what the effects of iron on the brain are (oh what a mindfield that is), or to investigate what chelators are and who uses them (tl;dr: keep those things away from me).
At first it all seemed easy. Go to the blood bank once a month, have 500ml of blood taken. Get the iron down. As the iron comes down, reduce the frequency of visits. Easy.
Banned from the Blood Bank
One too many “Vasovagal syncope” episodes (fainting. Even though I never actually fainted, but that’s what’s gone down on my file) got me banned from the blood bank.
And it was terrifying. I was moving back home to the country, away from the city. Technically moving interstate, too, which I was reminded about the hard way when I needed to add a third medical professional into the mix because the hospital wouldn’t accept referrals from my city-based specialist in the other state. Even though technically, the hospital system is run by that state.
Yeah. You can see it coming too, right? That oncoming shitshow? Buckle up.
A Country Practice
As it stands, I’m an anomaly in terms of Haemochromatosis. The usual suspects are middle aged or elderly men. Not a young women barely out of their teens. You typically see people track diagnoses down a family tree, not up it. It’s still sometimes referred to as a “men’s disease” because somehow apparently menstruating magically protects people from absorbing too much iron. (My ferritin of 618 at 18 years old would like to disagree with that assumption, so much)
So luckily, by the time I head back to the country - with our wonky as all getout “your rules don’t apply to us” border bubble health system - we’ve actually got it under control. The treatment phase, to reduce the iron, has been completed. We just need to work out what the best regime for maintenance of that is. In order to get blood taken - after being banned by the blood bank, of course - we need specific paperwork from a specific set of doctors. Physicians. Not to be confused with GPs, because that would be far too easy, wouldn’t it?
So we start the rounds of Physician roulette - which sounds more fun than it is, when there’s only 5 of them in 2015 and by the time one goes on maternity leave, another retires, and a third goes on indefinite medical leave, there’s not many options left after 2 years. (This also includes the infamous-to-people-who-know-me Dr “Oh you’re self medicating”, who refused to request certain tests and denied hospital referrals because the levels were ‘fine’ and I was ‘self medicating with periods anyway’. Colour me not surprised that when I got the call to tell me my appointment was cancelled because he was going on medical leave, that it was back to square 1 with the GP instead of passing patients onto someone else for ongoing care like my previous Physician did.)
And that’s just to get the referral papers - which once they’ve been filled in, I have to hand-deliver to the hospital. Just don’t take the first left down the stairs, that’s how you find out the cafeteria is right next to the morgue. The hospital staff at Campus A were amazing though, even though they took so long because nobody is allowed to start them. They without fail would run off to find a surgeon (this was the Day Surgery unit, after all) to actually start the procedure. Once it was started they were fine, but routinely they would have to run around for 30-45 minutes just to find someone to start it.
Keep in mind this is all well before COVID. This is 2015-2018. They’re struggling to start a simple venesection procedure in 2015.
The Australian health system was royally fucked from long before SARS2 decided to go for a joy ride around the world.
Hospital Switch
It feels like I’ve been to three hospitals but it’s only two - they moved the day surgery (read: squashed) into another part of the hospital at Campus A so they could do renovations. I think I got maybe one venesection in the New Surgery (which the nurses all complained about, it looks nice but apparently was less functional), before trying to book another venesection to be told “they don’t do them at Campus A anymore”.
By this point they have finally decided that they don’t actually need a specialists’ letter for venesections - you could still get one but it would only last you 3 months, while a letter from your GP would last 12. So we can cut out the extra $120/visit costs just to get paperwork from the specialists! Fucking hurrah!
But what we save in time, we lose in having to cross the river to get to the other hospital campus. There’s a new contact number to keep on hand. They actually give you a time to come in, rather than just a day. Campus W also seems to have slightly better food options - after all, I never got offered ice cream or jelly after my venesections at Campus A! (Although I haven’t been offered it since, but I did get a muffin once!). They’re also very strict on making you stay for half an hour once you’ve finished your procedure. And the nurses have, as far as I can tell from my 5 visits, ready to start the venesection at the drop of a hat.
Ring Ring, why won't you give me a call?
Unfortunately it’s not all smooth sailing; I’ve gotten to the point where my old GP would ask me what levels we were looking for. Where I’m practically calling the shots and just getting a sign-off that I’m allowed to do it. It’s kind of cool - it’s kind of scary.
My levels have started going up again - scarily so, considering I’d had a venesection between tests. So I’m urgently trying to get myself in for another venesection. I got the new referral letter on Monday afternoon, and tried to follow up with a phone call to the Clinical Liason Officer.
Answering machine.
So I leave a message, and decide to try again later. Maybe she was just at lunch.
Tuesday comes and goes with multiple calls to the officer’s number, and nothing but answering machine.
Wednesday I try to call while at work, in case I have more chances of catching them in the office before lunch time. Nothing, nothing, nothing. In the afternoon, I decide to try my luck on something I hadn’t tried for a while. Not since the change on the letter requirements.
It was time to check in with the blood bank, one more time.
Last time I’d tried this, I sat down with one of the nurses at the blood bank in a room. We had a talk. Said that it was possible, but I should get another couple of venesections under my belt. I’ve had at least that, if not more by this point.
But I don’t even get to speak to a nurse. Reception wants to send me to my GP to get put on the high ferritin app. ”I already am” I reiterated, ”I was a therapeutic donor. I wanted to try and get the ban lifted”. The tone changed slightly - out of their control, they said. Handed me an A6 card and wrote the national number I nearly called to see if I needed to book ahead to talk to someone, and told me to speak to a medical director because they had more power than the staff at the branch.
So at this point it’s where I mention that for the last 5 years, I’ve increasingly noticed that the closer my iron gets to 100, the more irritable and tetchy I get. (There’s some kind of extra spicy fuckery going on with cycle-related emotions too. It’s like a party of angry beans when there’s high iron and pre-period hormones. Nothing is safe - not even those keys, jumping out of my bag for no reason and falling on the floor. Especially those.)
I go home, angry and frustrated and rather upset (not even the allure of a food reward for going and asking the question worked - the brain collective said a hard “No.”), and despite it being 5pm, gave the line a call. After all, I’d wasted that half hour going into town, what was another half hour on the phone?
The first person I spoke to seemed nice enough. Checked my file, tried to tell me I was a therapeutic donor (strangely enough, I knew that. It’s the special program they have for people that need blood taken at different intervals, like haemochromatosis patients). Eventually explained that I was trying to see if we could lift the ban, since it had been 8 years and I’d had plenty of venesections since then without a problem. That was beyond her powers, but she was going to transfer me to a nurse.
Of course the “episodes” were one of the first things that were mentioned.
“It says here you had 4 episodes of Vasovagal syncopes in 2014**. What’s changed?”
I don’t know if it’s just because the wording caught me off guard, or if it was the shortness of “What’s changed”. It felt very much like “you’ve had fainting episodes. Nothing’s changed that. You can’t undo those. End of conversation”.
I mentioned that it had been 8 years. That I was barely in my 20’s when that happened. That I’m no longer in the city taking public transport, which was apparently an issue at the time, and that I’m driving myself to my appointments now with no issues. That I’ve had 5 venesections I’ve successfully taken myself to and from. (As of writing, 28 in total. 16 at the blood bank, and 12 at the hospital)
“You’re still a safety risk. You could faint while driving and cause an accident.”
It kind of feels like a kick in the guts - to be told despite all the work you’ve done over the last 8 years, of trying to do your best to get through venesections without any major mishaps, building little rituals around venesection day? That it’s not good enough. That none of it is good enough. That the pat on the back you’re giving yourself for being able to drive to and from a venesection is really being a “safety risk”. That hundreds of people drive themselves to the blood bank and back, but you are the one that’s a risk because of how you reacted 8 years ago (or more).
**BTW I’m 99% sure this claim of “4 Vasovagal syncopes in 2014” is False, actually.
November 2011: First blood donation ever. People *routinely* have a bad first donation because the body is freaking out. Mine just freaked out, went green, and took 4 hours to stop feeling light headed enough that I could go home (with friend who drove me and came as support). Is that REALLY a first strike against me?
- ??? I don’t know honestly. But chances are this was a dodo moment from me, where I unfortunately aligned procedural bleeding with monthly “self medicated” bleeding.
(& 4)- 2014 sometime: I remember these because it was the same nurse both times!! Once they put the needle in and then had to keep jiggling it around to get it to go, and I’m pretty sure that set me up for a poor reaction. The other time, they put the needle in and (vocally) observed that it was bleeding around the needle.
NOTE: none of these were episodes where I actually fainted. I got light headed, and the world span a bit, but I never passed out. Even my worse at the hospital didn’t knock me out (but oh boy it came close. And I know 100% that was because the tourniquet was too tight, and the rush of blood when they took it off is why my hearing went all funny and my vision was full of dots and the world spun really badly. But I know now to make a fuss if it’s too tight, if my arm goes red or purple, and not just ‘grin and bear it’.)
But that phrase sticks in my mind. “You’re a safety risk”. It’s probably going to sit there on the mental shelf, right next to “You’re self medicating”.
So the blood bank is - yet again - a write off. Maybe I’ll try again. Maybe I’ll get mad and make a list of all the ways I’ve improved with my approach to venesections. Or maybe I’ll give them away as a joke.
It’d be easier if they weren’t a nation-wide system.
Missing in Action
With the blood bank scrapped again from the options list, it brings me back to the hospital. Campus W. Chasing down Clinical Liason Officer. Because it’s the ONLY thing I could do at the time, I scan my referral and send an email. Just in case it’ll get a response. Thursday rolls around and still no dice from calling. Even the standard hospital number in the hopes that someone might be able to actually collar the officer and get a response, only gets me transferred to the same line that results in the answering machine.
So I grab my physical copy of the letter. Stuff my other notebooks with contact details into my bag, and choof over the river. Phones and emails hadn’t worked - but surely if I walked in there, someone would know something.
And they did.
Turns out the Clinical Lliason Officer is away. By the sounds of it, they’ve been away probably the whole time I’ve been trying to get in touch. There’s nobody filling their position while they’re gone. The hospital staff don’t know when she’ll be back. They hope it’ll be “Next Week”. There’s a side comment made about “if she isn’t back we’ll find someone to fill in that position”.
One person to book and schedule people for procedures across two campuses that serve close to 70,000 people.
And they don’t know when she’ll be back.
“If it’s pressing, you can go back to your GP to find an alternative or you can go to the ED”
This is just trying to book one single venesection. Just asking someone to take 500ml of blood. Something that’s an ongoing process and requires monitoring. It’s a regional city, but it’s not /rural/. We’re supposed to be a hub for other more rural towns. But I’ve lost track of the phone calls made, the time going to ask people questions. The time lost to being pushed back when trying to look at all my options. (Not that there are many of them).
It should not be this difficult.