On July 26, 2005, I went into an appointment for which I had been waiting for months, perhaps even years. The location was a surprise to me and the whole event was filled with triggers, echoes, and shifts from 32 years of trauma, the best and the darkest places of me.
It was an appointment to have some pictures taken while lying in a one-foot-radius tube while a 1.5 Tesla electromagnet circled me; in other words, a cardiac MRI. Of course, given my unique history, we needed a specialist, someone who knew pediatric morphology at its most bizarre and a staff to support it, so we went to one of the midwest's finest centers for it: Children's Memorial Hospital.
Yes, old friends, the same place all four surgeries to date came before. The same place that gave me the breath of life back and stole my sanity and my future fifteen years later. Yes, dear readers, the same place you may have read about elsewhere in this blog.
I knew I couldn't make it through without help, though. Yeah, it's "only an MRI", but I have too much history here… plus there is more, so much more, than unfolds after this. So I had asked for help — a difficult enough thing to do, but one that I think I finally figured out how to do — and among the help I received was an offer from my co-worker Jim to be my ride and psychoemotive backup for the morning's events.
Jim picked me up at 5:30 AM, by our plans, and we got to CMH early — 6:00 AM — as per their request. First they held me in the lobby for 20 minutes after check-in, as they were waiting for my bed to be prepped. "?" thought I. Then the receptionist told us that that they were ready and sent me to outpatient surgery ("!?!") on 3 ("??"), where there was a bed waiting for me. As we entered the waiting room, then the combination waiting/recovery ward, I started to feel distinctly uncomfortable. "This is hitting a closer than I expected," I remember remarking quietly to Jim. We waited at the checkin desk, but while waiting I looked at the board, and saw that they had an entry for Brianna Swanson. I got to the front and they asked why we were there. I mentioned "Well, I'm supposed to have an MRI at 7," and they frowned and said, "With sedation?" Again, the alarms went off a little in my head. "Uh, nobody even mentioned the possibility of sedation, so if it's all the same to you I wasn't thinking so…." They made some calls, and said, "Well, we think you're supposed to go to Desk E on 2." So (with a note of relief) we fled outpatient surgery and went down the elevator to 2, which is where I knew the MRI unit actually was physically. However, desk E appeared to be something like the immunology the desk. Predictably, those people had no clue where I was supposed to go. They made more calls and finally said "Go to medical imaging on 1." Finally we get down to 1 (using a "patients and staff only" elevator — I was a patient, right?). On 1 they took my info, growled about me being late (being as now that it was 6:45 AM) and then said they couldn't process me because I hadn't been registered — which couldn't happen until 7:00, because registration didn't open until 7:00, even though my appointment was for 7:00. So we waited on the colorful, low couches until 7:00, picked up the house phone for registration and gave them my updated info (which took all of three minutes). I reported back, "Okay, now I'm registered". They asked if I had been there before, to which I had an answer akin to "Yes, but not for so long that whatever form you were thinking about having me sign, you really need to have me sign again." The radiology clerk was really not in a humorous mode and asked me very flatly when the last time I was in the hospital was. "1988, so that'd be 17 years." She just looked at me. "And a few weeks on top," I added helpfully. So she produced a HIPAA form (ahh, yes, it finally made sense), I signed it, and we got escorted to the MRI on (you guessed it) 2.
When I got there, things felt much more at ease. Kristin, my very nice but not overly saccharine nurse, was incredibly kind about acknowledging my freak-out potential, asking me what in advance she could do to make things easier for me and what she needed to be most careful with. Since they were going to start an IV for contrast (I had figured, but nobody had ever actually gotten back to me to tell me no matter how many times I called), she wanted to know (for instance) if I needed a countdown or if she should just stick me and get it over with. Even her mere saying that started to raise my panic-gorge and I quickly said "No, you need to let me know everything that's going to happen. No surprises. It's surprises that I react badly to. That and watching. Countdowns and aversion of gaze." So she started an IV for contrast, offering to "let my dad hold my hand." I thought about how revolting of a concept that was, since he's been dead for almost twenty years, and then Jim and I explained through much laughter that he's my coworker, not my dad (despite a visually-obvious generational difference), and that we compare notes on parenting teenagers and such. I decided to make the revolting comment out loud (it's my way of defusing stress, I suppose) and she just gave me this look as if to say, "Oh, so you're into the med professional gallows humor as well, I see."
Somewhere in there, she explained that my 7:00 slot (and first appointment, set up by design to have the least likelihood of getting bumped by a stat case) was given to the next patient in line and I was given their slot. So while waiting for the tube to clear up (it's maybe 7:30 at this point), I hear them telling the kid in the next berth "We're sorry, but it seems the machine broke down." I ask Jim if he heard that — he hadn't — and I made some comment about "boy, I hope that refers to some other kind of machine." Two minutes later, the MRI tech comes in, introduces herself, and tells us the same thing. (Turns out the kid in the first appointment — which was supposed to be me — wasn't actually finished with the study yet, and he was in the tube when it crashed. Thank you, universe!) Jim and I, both technical people, play a round of "second guess the troubleshooter" by asking her some questions, such as "what have you tried so far?", "has it ever done this before?", "how long was it down last time it crashed?", and perhaps the most important "is the magnet still actually powered up?" She mentioned that a GE tech was on the way and that he would be there very soon; we could wait around for a little bit to see what would happen, although last time it was down this badly, it took them six hours to get the machine back up and running. Since I already had my IV in, we decided to stay around for an hour or so to see if a technician could just reboot the thing and get it running, or if it was really hosed and needed parts.
Kristin offered us a "consolation prize" of some passes for food downstairs, and said that we should go down to the lobby to wait for them. They put a shield over my IV to keep it secure, which I very much appreciated, and explained how this positive pressure ender worked and allowed me to travel around without having to wheel around a stand with a unit of normal saline hanging. So I went back into the bathroom and changed out of the medical nightie (with an IV in my arm, even vaclock'd as it was, it was a challenge) back into my button down and jeans, and headed off with Jim to the lobby (with him very kindly toting my laptop as well as his own).
We were downstairs waiting (what else?) for a bit and the same receptionist came out and produced some gift certificates for McDonald's, which is in the basement. (Rant digression: Why is there a McDonalds in a CHILDREN'S HOSPITAL?!) We spent our five bucks on some orange juice (which tasted better than I remember McD's OJ tasting) and hash browns and biscuits, and talking about team policies and implementation. An hour later, just after finishing our food and saying "so now what do we do?", we get a call (you can use cell phones in the hospital now? what?!) that the machine is back online! So of course we scrambled upstairs and I bolt into the bathroom to change back into the sillygown. They'd given me a new one, this time the right size — adult instead of child — but with a broken tie so that I had to hold the thing closed to keep from traumatizing children (and probably the nurses).
It was at this point that I experienced the event that motivated this post. But it's almost a completely separate event and it will get its own write-up — later.
We entered the main room and removed most metallic items (I removed everything except my staples; Jim got to keep his glasses on). While looking at the tube, I asked them if they had shrunk the bore. It looked smaller than I remembered it, and I didn't think I was that much larger than seven years ago, which was my last one. (It turns out that the difference was the vendor of the machine; the GE bores are only about one foot in radius, which is significantly smaller than the Siemens units.) I never had claustrophobia until my second MRI, when I was fully in the tube (head-first) for two and half hours with no earplugs, no companions, no break, and nothing but a unit of saline tubed into my arm perched by my side to keep me company. So I looked at that tube and felt like I was going to freak out. That was narrow; so narrow, in fact, that they had to angle my arms up, because my wide nordic frame (and that's not the weight; that's literally the shoulder set) was almost the same width as the diameter of the bore itself! There were two saving graces, though; one was that while it was narrower, it was *shorter* — only about three or four feet long, perhaps — which means that while inside, I could wiggle my toes and feel air; the other was that I got to go in feet-first! So much nicer (and I will NEVER go in head-first again, thank you very much); even when I was in the tube, I could angle my neck back and see the light of the outside world (and that's one of the other humane things about the CMH second floor facility; there's an outside window that provides natural light to the room). Which was helpful, because they had layered a breathing sensor around me, a plus-and-square sensor resting on my ribcage, and wrapped all of it (with my arms) up in some kind of retaining blanket that kept me more or less snugly affixed to the sensors (and immobile, in a large sense, in the tube).
The study itself was very easy for the first half; about 45 minutes of noise (tempered well by the earplugs they had put in) punctuated by requests for me to inhale, exhale, and hold my breath for N seconds (with N most often being 11, 12, or, rarely, 30). For the second half, they pulled me out, started the contrast into my IV (a gadolinium chelate whose name I forget now), and put me back in the bore. The contrast was very warm coursing into my arm and was not totally comfortable; the studies were getting longer and more uncomfortable; the fingertip pulse ox was tighter and pinching kind of badly on my pinky, and the noise was a whole new level; I would have been seriously worried about hearing damage if I hadn't had -30 or so dB earplugs in! (Turns out the "advanced" sounds were due to two MRA analyses they were doing with the contrast. I had never heard anything like that before.)
They pulled me out in a record (for me) 90 minutes. I was woozy for a minute, but regained my footing fairly quickly. I got to have them pull the IV (I had already doffed the pulseox sensor and pulled the earplugs). I was shaky, sore, and tired, but I was done.
I met with the MRI tech and the diagnostic cardiologist afterwards. Apparently, their recently-upgraded machine gave great pictures; imaging on morphology, shunts, flow, velocity, R-L shunting, and everything else they were looking for were all good. The map was going to require at least a week of data processing… but a map would be had. Combine that with the echo results from April and the comparisons from past MRIs and echos, and we'd have enough information to start the Plan.
Let me take a moment to say thanks to everybody who lent well wishes and support in various ways through this whole process. As they say, the fun's just getting started, and you'll definitely be hearing from me more on this topic.
Because we're really in it this time. Cycle 5.
But more on that to come.
An amusing footnote: the bill arrived on Friday. The total amount for the MRI? $6,095.00.
With the $2,239.00 that the checkup in April cost, I'm already at $8,334.00 for this cycle.
Let's see how high it'll go. My guesstimate is somewhere in the neighborhood of $500,000. I think perhaps I should start a betting pool….