OK, I just got called out - understandably so - on having yet another surgery without saying anything here prior to, thus apparently contravening my mandate to be more open.
First off, that wasn't a self-mandate, it was imposed by others. True, they were mental health professionals and I try to be respectful of their attempts to help me, but so far I haven't come across a single one that actually walks in my shoes. After all, dealing with touchy-feely and intense personal interaction is hardly a career the autistic person is going to gravitate to!
Second off - well - have any of y'all seen the TV series called Astrid? It's French with English subtitles. (The PBS Masterpiece English language version called Patience, even though using much of the original's scripts verbatum, is a watered down and hacked up attempt at mainstreaming the show for the North American market) And yes, I have dammed all things French while doing vitriolic hack-jobs on them in the past, assuming the French business culture, and Parisians in general, were representative of all French. It's interesting that when you take the time to step outside the business world, and the realms of the haughty Parisians, the 'normal' French feel just about the same way, and make the same sort of snide, divisive cracks about them that I do. Which makes them more human than I care to admit. (But I still contend that French cuisine is highly overrated.)
Anyway - one of the protagonists of Astrid is autistic. A little further down the spectrum than I am, but frankly not by much any more. (I swear I have been getting worse since retirement!) She carries 10 beans in a pocket. When a stressor is encountered she moves a bean from that pocket to another. How many beans she moves depends on the intensity of the stressor. When the stressor has passed she moves a bean(s) back to the original pocket. The lower the supply of beans in the 'home' pocket, the closer she is to a meltdown and she sometimes has to bail out of the 'secular world' - to give it a title - and hole up somewhere untill the crisis passes.
Well I only have so many hypothetical beans of my own and sometimes have to conserve. It's not that I'm trying to be obtuse, obscure, secretive, uncomunicative, it's just that sometimes - often - that's how an autistic's self preservation comes across.
But now that the primary stressors of this latest event are behind me and most the beans are back in the hypothetical home pocket I am able to process without a meltdown, or at least only minor meltdowns.
This particular surgery, my 7th in the past three years and done on Feb 20, wasn't really that big a deal, except that it was.
You see - in September of 2023 I threw a bright-spot in my left lung during my 3rd CT scan (so far I've had 12 CT's with more scheduled) and even though symptomless, that sent me to the ER and landed me on blood-thinners because of a 5 year old, previously undiagnosed, clot in my right leg. But I had two major surgeries scheduled for the following month and had to be off the blood-thinners for them
so I ended up having an ICV filter installed before the surgeries to trap any rogue clots in my full-strength blood before they got to my lungs.
The IVC was placed, the surgeries were performed, successfully removing the detectable cancers, (continued chemo was used to knock out the undetectible, if any, cancer cells) and I went back on the blood thinners.
But here's where things fell apart. Aparently IVC filters are normally removed again within three months. But somehow, if it was ever sent at all, I missed that memo. (My excuse is that I was more dead than alive at the time, what with cancer standing over me with a scythe casting a shadow across my shoulder on one side and side effects of the first round of chemo and two major surgeries nearly killing me on the other side.) and it also apparently fell through the cracks with my various care-teams.
Then in Feb 2025 my original oncologist left to become the Chief of Oncology elsewhere and I was handed off to another oncologist. Thus further disrupting the flow.
At our third consult (which always follow a round of scans and tests) she, the new oncologist, suddenly twigged to the fact that that IVC filter was still in me (I honestly thought that was normal right up until that moment, after all, as far as I know that clot is still there) and panic erupted!
I was handed off to a Hemotologist who reviewed my case and handed me off to Interventional Radiology, the people that actually insert and remove these things. Those people, from the nurse taking my vitals, all the way up to the surgeon, got all hyper over the fact that the thing had been in me so long.
Anyway, after 2.5 years it was a moderately high-risk procedure to get it back out again (but even higher risk leaving it in since the fine little arms can fatigue over time and potentially break off) so I was booked for the first surgery of Feb 20 at 0700 (fresh staff and maximum supplies on hand) at the main building where I'd be next door to the trauma and ICU facilities.
- then they called the night before and rescheduled for 1015. Of course the scheduler has no idea why, they've just been told to make the change.
- at 1115, while I'm showing signs of a meltdown (I couldn't use the green candy to derail it because no food after midnight. Fortunately my meltdowns are not outwardly disruptive - i.e. don't look like a tantrum, but rather I shut down, curl up, and retreat from the world) there in the packed waiting room, The Wife starts raising hell until we were finally given an update (the guy in the OR ahead of me wasn't doing well but they were making progress)
- At 1200 we finally get called back and at 1255 I was given a touch of midazolam and fentanyl to, and I quote, "help you stay relaxed and comfortable while staying awake and breathing on your own" (of my 7 surgeries I've been awake for 4 of them). That same paper also says "The medicine helps reduce anxiety and pain". Well when you start at the elevated levels of anxiety of an autistic thrashing around amidst every sensory trigger there is as if they'd been tossed into an industrial clothes dryer and left to tumble while booming rap music is blasted into their ears, 'reduced' anxiety doesn't even get you down to the level where normal people live! The instructions also state "If you feel anxious or have pain at any time during the procedure let your care team know right away" (their bold, not mine) But, as The Wife pointed out to them, I can't.
It's really hard to explain, and I'm not sure I really understand it myself, which is why those that don't live it don't have a frigging chance of understanding, but there are times, such as these, when I can not verbally express myself. My mind races and produces sentences, but the connection between there and my voice it temporarily disconnected. During events like this I can stimm with my left fingers but very few people not involved with autistics recognize that that might be an attempt to communicate. It would be better if they'd let The Wife into the room so she could translate for me. If I'm stimming the anxiety and pain levels are high! But she's not so, as you'll see below, I end up silently dealing with the pain of the procedure.
What follows is cut and pasted from the aftermath report with my unsolicited comments thown in.
Ultrasound evaluation of the right internal jugular vein demonstrated a patent and compressible vein. With the patient in the supine position, the skin overlying the access site was prepped and draped in the usual sterile fashion. Lidocaine 1% was used for local anesthesia. (Holy Crap that shit burns until it finally takes effect!) Under ultrasound imaging-guidance a 21 gauge needle was advanced into the vein and the access site was scaled up to accept a Micropuncture transition dilator. (Which is a fancy way of saying they punched a hole in me then used a big-ass
funnel-like thing jammed into my jugular to make the hole bigger! At this point I'm on my back, my head is turned to the left, and the surgeon has her elbow in my right ear for leverage, pinning me down as she's grunting with the effort of cramming shit down my neck while someone else is mopping up the blood running out of me!)
An image was obtained and placed into the medical record.
A guidewire was advanced into the venous system under fluoroscopic-guidance and a 5 French flush catheter was advanced with the aid of the wire carefully past the Option filter into the distal inferior vena cava, (what's not in this report is that in the process, twice, the wire slipped into the adjacent renal vien before it was spotted and pulled back out and I felt it like a kick to my kidney each time! I'm writing this on Feb 26 and my kidney still aches, although that might be phycosomatic.) followed by digital subtraction venography of the inferior vena cava and its major branches. (Fancy-speak for 'took another picture')
The access site (that friggin hole in my neck that's fast becoming the size of the Lincoln Tunnel!) was then scaled up to accept an 11 French sheath (In human speak, they decided
that the hole needed to be slightly over twice the diameter they first thought was enough!) which was advanced into the inferior vena cava, superior to the filter. A snare and guide catheter were used to capture the hook of the filter. The filter was captured into the sheath and removed. (What’s missing here is that they tried several times, withdrawing and reinserting the guide-wire and snare, twisting and turning it different ways, before the surgeon called for a 25mm gooseneck. Now think about that! 25mm is just shy of one inch in diameter! I don't know what the next size up would have been, but fortunately they were able to snag the IVC on the second try with this nasty-sounding bit of gear!)
Post procedure venography demonstrated the following: No evidence of extravsation with a normal appearing inferior vena cava
 |
| Those hook-like things on the ends of the wires are exactly what they look like. They grab onto the interior walls of the vein to keep the filter from drifting away with the blood-flow. To get it out they snag the little loop at the top then pull while lowering a sheath around the filter to collapse the wires, pulling them away from the vein's walls and unhooking them. In my case one of the hooks was stuborn enough to come out with a bit of me still attached to it. |
And to answer your question Michael, no The Wife has no instructions on how to let all y'all know if I've 'walked on', to use your phrase. If I have she'll have enough to deal with without that too. Instead I have a 'doomsday' post queued up that will release on its own. That, depending on the timing, will be somewhere between two and three months after I'm no longer able to alter the scheduled release. Of course it won't have details of what happened but it will serve to close the book.
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