Once upon a time, in a land far far away, I was healthy. Once upon a time I got my fill of medicine watching ER and perving/drooling over Dr Kovac, with his hot Croatian accent. Good times. Fun times. Times to which I wish I could return. But alas, that time is passed and I now have the joy of being felt up by neurologists with whom I used to work.
(Pretty accurate depiction of autonomic testing)
Where was I?
My own work/pride/need a big can of Harden Up Princess, issues aside, the autonomic battery is about as fun as an anal probe conducted by an meth addled lemur on a unicycle.
It begins 48hrs prior to even getting to the hospital when you must cease all medications. You know those ones that keep you standing, stop you vomiting, or crapping or speaking such incomprehensible garble, you need your own personal Rosetta Stone to translate. Yep, those ones. Not even a piddly little antihistamine, when you're smack bang in the middle of the pollen apocalypse. You just know it's all going to end in tears.
Then on the morning, because morning is the worst time of day for anyone with Bob, and the obvious time to do testing, you can't even cry into your Cornflakes, because you are fasting. No water, no salt, no food. And the ever fickle Melbourne decides to finally find Summer after needing the fireplace a few days before, and turns on a 32C day. If I hadn't been so completely dehydrated I would have cried a tear or two whilst I wallowed in self pity.
Poor L-Plater had to drive me. To say he was stoked at the prospect of driving his babbling, brain fogged, staggering mother to her appointment, and then to sit around in the hospital for a couple of hours, may be an understatement. Actually, I think his favourite part was when the sleazy cafe guy asked if I was his sister. The look on his horrified teenage face made the whole day worth it.
You do have to love neurologist humour. It's one step above Dad humour. You lie there thinking "Dear lord, make it stop, please make it stop". Trapped in a never ending comedy hell, where even feigning death or passing out doesn't end the torment. Given that autonomic testing involves been strapped down to a table, the logical place to go was bondage, where questions such as whether a dominatrix takes into account the effects of passive bondage on her clients' autonomic nervous systems? are posited. Yes, this is how I spent the couple of hours of testing. It's a unique approach to relaxing your patients, I'll give him that.
In between these educational S&M discussions, I learnt about living in New York, that the machine used to measure my bp and hr was named Colin and didn't like being called Colleen or Collette, that the giraffe is an abomination in the eyes of intelligent design, and the low down on who was working where these days.
I also did tests like the Q-sart (sweat test), where they put gel on your foot, leg and arm and hook you up to a battery for some fun zapping. Not overly painful, but rather annoying. My results were odd and he admitted he may never have an explanation for why they are the way they are. There were others like the good old deep breathing test where you follow a green light go up and down in 5 sec intervals, and get to feel light headed and giddy.
My favourite would have to be the Valsalva test which I apparently failed so "spectacularly" I didn't even have to do it a second time. YAY Me! For the uninitiated the Valsalva test involves blowing into a bugle thingy (yes I'm all on top of the high tech medical lingo) and maintain a pressure of 40, for 15 seconds. Pisser is that there is a leak in the device so you have to keep blowing. Bring on that anal probing lemur, because I'd rather be probed by an odd looking pigmy primate, than do the Valsalva again. Having your pulse pressure drop to a consistent zero is not all that it's cracked up to be. Who'd have thunk it? I've had low pulse pressure, 5 or 7, before, but never a big fat zero, and that my friends is mightily unpleasant. Two days later I still have chest and head pain.
The tilt table test (is this no.4?) was equally fun, and ended early in the piece as he had all the info he needed and he couldn't see the point in torturing me any longer. He did enjoy my descriptors during the process, "blech" and "shite" are now officially in my file. All that university learning has obviously paid off. So after all that, apparently my body doesn't like being vertical. Now there's a shocker. I did have to laugh that I now meet the criteria for POTS. Although, there was the caveat "but it's not quite that simple". Like the Danoz Direct ads I have the "but wait there's more" version of POTS. YAY! Well today at least. The way my symptoms change who knows what it'll be next week. Tis nice to have a type for once, even if it is of the iffy variety and completely transient. When I asked him why I've gone from bradycardic to tachycardic he just joked that my body was "trying something new". That there is some fine doctoring, my friends.
The last part was to close your eyes and say when you felt the table was returned to the horizontal, which I passed with flying colours. Now to work out how I can use that in my every day life. You know the whole, "use your strengths to compensate for your weaknesses" theory. Human spirit level perhaps? I did have to laugh when he mentioned that one of his well endowed female patients told him she cheated, because she could feel when her boobs ended up in her armpits. Not that my miniature mammaries can do that. But hey. That really just exemplifies the whole weird and wonderful experience.
I will say he was good at the explanations. He sat down after we'd finished and went through all the graphs and results and explained each of them in detail. He told more bad jokes, plied me with water, let me lay down for a while and gave me a list of suggestions to help, all of which I already do unfortunately. Interestingly, he did say for me I need weight baring and not cardio exercise as I have lost so much muscle mass since August. Apart from the generic effects, cardio is just not going to do anything for my version of Bob.
The only new bit of information was that he thought I'd be a good candidate for monthly intravenous immunoglobulin (IVIG). Of course like most of the options for me, this is damn hard to get in Australia, even if you are fully immunocompromised you struggle to get access. And, yet again, stupidly expensive. C'est la vie.
So it's all over for another year or two. After giving him the deed to my house to pay for the privilege of being strapped down, and up, and tortured for a few hours, I managed to get home and fall into coma sleep. Now I have simply to contend with the giant ringworm welts on my body thanks to the ECG and other pads. Thankfully, Dr FB Friends has given me a load of options to help with the painful oozy itching. (Before anyone asks, there were no hypo-allergenic ones available. Given I had already been 48hrs without meds, fasted and made the trip in, I decided to suck it up and just get it over and done with, rather than repeat the prep process).
So now it's recovery time. Time to live in the Batcave or maybe drag myself out to the couch, catch up on some eps of American Horror Story (please tells me it gets scarier. Because so far its weird, but horror? Not so much), and rest up for a wee while. Must say a medication holiday does make you truly appreciate what the meds are doing for you. They really are the difference between being able to stand and semi-function and being bed bound. Side-effects be damned, they are here to stay.
Okay I'm off to find a nice corner to pass out in until the exhaustion passes.
Michelle :)
Farewell balloon blowing, singing, laughter and tuba playing, "you're history, no good for me".
