no longer under warranty
Tuesday morning, trying to nap, I couldn't quite get comfortable. By 11am, that had changed to pain under the base of my sternum, like a rock underneath it. My thought at the time was "oh shit, should have cooked those eggs a little longer" and "please let this not be noro again". (A bout with norovirus a year or so back was one of the most miserable nights of my entire life, and one I do not wish to ever repeat.)
The pain was constant, unchanging. I wished for nausea, hoping for the relief that comes from getting rid of the bad. That didn't come. After a couple of hours, some chills. A shower gave no relief. I barely got myself to a CVS for some anti-gas pills, and also took some antacids at 2:30pm. No relief from either, no change in the pain.
Being 50 now, with chest pain, and not having seen a doctor in well over a decade (lucky to be generally healthy, and procrastinaty as hell), the question becomes, should I be calling 911? I try calling Lauren's PCP's office, where I had intended to be going long ago (even looking up the number was difficult to concentrate on), and of course the words "chest pain" trigger "seek medical attention now". No surprise there.
Complicating the situation: Lauren was out of town, due to be traveling back at that time, having finished dealing with the last of the tasks associated with the recent death of her father, which came on the heels of a pair of health crises of her
own. So not only did I not have her help and judgement at that time, I was faced with calling her, and giving her a new burden for her long drive home. I sent her a very short email, which I hoped she would not encounter until after arriving home, describing my pain and my plan to drive to Mt Auburn Hospital, and then I drove there, very, very carefully.
The ER had around half a dozen cases in the waiting room. They quickly triaged me ("chills" earned me a mask until the interview with the triage nurse), and chest pain earned me a quick call-up for an EKG. They soon indicated there was no sign there had been a heart attack, so back to the waiting room with an IV in the crook of my right elbow.
The time in the waiting room was very difficult. I'm there experiencing the worst pain of my life. I knew there's a process and priorities. The temptation to scream "I can't take this; please help me now" was so very difficult to resist. To know the right action, rationally, and to be able to actually do it, under duress, is so very hard. I squirmed, and I paced, and I wished, oh did I wish, for help and relief.
After five hours of steady, unchanging pain, it spreads downwards and to the right, along and under my ribcage. It felt as if I had strained the muscles on my right side, since moving them started to hurt enormously. The change at least gave me an excuse to bring myself back to the desk. I was told that I'm next, but I'm waiting for a bed. I wait. Badly. But eventually I'm called in to a room.
My timeline here becomes fuzzy. The papers I now have show a chest X-ray just before 4pm. I remember very much wishing I didn't have to lay down for it because of the side pain. Mercifully, it was standing, and they gave me little nipple stickers before taking it. I don't remember it being that early, though. I think I got an ER bed around 4:45ish, and I was in a hospital room around 8pm. In that window, also, were several interviews, a blood draw, a dose of blessed pain relief meds, abdominal X-rays, and an abdominal ultrasound.
Also in here, a call from Lauren, who has received my email while still out of town, and before beginning her return trip. I gave her the update, which at that point was a list of things they had done, and not of any actual status or diagnosis.
During the call, a doctor arrives, so I end the call, imploring her to be careful returning home despite the situation.
The summary from that doctor, after some questioning (including the prize "Q: last time you had alcohol? A: uh, Passover. Q: four cups?") the situation is: I have been diagnosed with epigastric pain, possibly GERD/reflux related. I am to be pseudo-admitted for observation just in case there still really is something cardiac going on, after which I'll be released and prescribed Prilosec.
This just did not quite square with me. At this point, I'd been having the worst pain in my life (but which I still scored as a "5", since I knew it could be worse, and that I'd been fortunate in my life), and this experience was unlike any of the minor reflux I had ever felt. I was, in a word, dubious. I expressed this to the doctor. And to his manifest credit, he re-evaluated. He poked my belly again. At this point, the substernal pain was basically gone, having relocated entirely to my right side. He probes the left side of my belly, opposite the side with the pain. I yelp, feeling it on my right side. He asks, "Really?". I say, "Really". He repeats, to confirm. Really. Push there, comes out here.
"I think we'll get you a CT scan". I may be mythologizing this in my own head, but I think in that moment I was spared at the very least a longer time in the hospital before they really figured things out. Thank you, oh thank you, Doctor Steven I Master, for listening, and for re-evaluating.
So, from the ER, to a hospital bed. Or, at least, an attempt to get in the hospital bed. Unlike the firm and steady ER gurney, on which I was able to recline in some approximation of comfort, the hospital bed was somewhat squishy and uncertain. Just sitting up, in the bed, involved the muscles on my right side. The ones that trigger pain. Pain which triggers movement. Movement which causes more muscle involvement. It's a positive feedback loop, for pain. In what was my most uncharitable moment in the hospital, I announced that the bed was a device designed to torture me, and I abandoned it with extreme prejudice for a tall cushioned chair with a firm seat, in which I was able to very gingerly lever myself back without triggering the feedback loop of awful pain.
At that point, I was in pain, bad pain, and I had not been shy in saying so, having learnt the lesson from Lauren's health crises. I asked for relief. I felt I had to wait too long for it, and upon a repeated request after what I think was 90 minutes, I was offered the choice of Tylenol or morphine. Despite wondering if it's a trick question, because it sure as fuck was posed like one, I chose the morphine. I am unfailingly satisfied with the level of care I received from every single person in that ER, and with every diagnostic technician. I am not so pleased with my first hospital room nurse.
The scheduled CT scan required imbibing a contrast solution (web says dilute barium) over 90 minutes, which months ago I got to help Lauren do, so it was a familiar-looking bottle in front of me. Getting the drink down was not difficult. It was, surprisingly, not horribly awful, having just an odd aftertaste. The wait past the 90 minutes, and then even later, was less lovely, but I did nap in the chair some. I didn't mention at the start of this, but with my bizarre sleep schedule, I had been up for 24 hours at the point where I got an ER bed. Sleep, any sleep, would also be a blessing.
After midnight (13 hours into this), I was taken for the CT scan. Never had one, never witnessed one directly. Unlike the X-rays, this did require laying down. On a very flat, very hard surface, with nothing to grab for support. I tried to lay down. The agony of the feedback loop kicked in, more awful than anything I had experienced. I could not do it. I could not. I could not handle the pain. I made noises I will not attempt to characterize here. I rolled onto my side, arm hanging down and grabbing under the table. The tech moved the table back, and my fingers got pinched (and pinched is all, fortunately) in the works somewhere. He says that if I can't do the test, it's OK, and they'll just not do it.
Emotionally, I have just had the worst pain experience of my life (to that point in my life, which will be a repeating theme here). Intellectually, I knew, I just knew, that the only way out of the pain is to have that scan done. I'm not very strong, and I didn't know whether I can do it. I asked the tech for some time to gather myself, and to please try again.
On the retry, I went at it by laying on my side and rolling onto my back. I did so with knees bent, dreading the attempt to straighten them, but the tech said I can probably leave them bent and still be scanned. Bent they stayed, and the cat was scanned. No GIFs, sadly. After the scan, the strong tech quickly levered me up, saving me yet more pain, for which I was very grateful.
I am bad with names under the best of circumstances, but numbers I recall freely. My geeky heritage, or self-selection, whichever it may be. I eventually came to wish that everyone in the hospital would hand out business cards that you could squirrel away until later, to aid memory. This of course would be horrible for hospital hygiene, and where would you put them anyway? I greatly regret that I do not remember the names of so many people who helped me and were kind to me, that CT scan technician among them. Thank you, Mr CT Scan Technician.
Two other details from the CT scan: First, I had to hold my arms vertically for the scan, where they came to rest against the side of the ring as my body was fully slid back and forth through the donut hole. In retrospect, I cannot help but see this in my head as resembling "arms up" for a rollercoaster ride. I don't know if I would have been amused by it at the time. Second, in addition to the contrast agent I had swallowed, there was an also an injected contrast, which, as warned, produced a strange flushed sensation I particular noticed in my earlobes. While I might not have been amused by the rollercoaster parallel at the time, I know I was amused, as I was wheeled out, by the resemblance of the clear-covered, twin-barreled contrast injector to a device right out of a campy horror movie.
Returning to the hospital room, I was prepared to give the bed another go, knowing from the CT scan that keeping my knees bent could be a relief. While I dreaded trying to get into it again, the sleep on the hard-seated chair was not entirely good, and I feared falling out of it. Contorting the bed, I'm able to get into it, and settle in to it, with only moderate passes through the right-side-pain feedback loop.
The exact timeline of those early Wednesday hours is difficult to remember. Somewhere in there, Lauren arrived (4am ish, she reports). Somewhere in there, then pain changed, badly, to stabby, stabby 8's, in my right side. Somewhere in there, they started me on IV antibiotics. There was a headache that started early that night, even through morphine, which seemed grossly wrong and unfair, even if trivial compared to my abdominal nightmare. Lauren demanded the trick answer of BOTH morphine AND Tylenol, which may eventually may have helped me sleep, when sleep came.
At the end of the worst of those hours, trashing about, standing up, I discovered that leaning forward provided some relief from the stabbing. I clambered into bed, hunched over a pile of pillows, and somehow did find sleep. Lauren later saw me roll onto my back, which she remembers as the sign I'd had relief from the pain. My vitals were checked by a kind nurse, Claire, with an accent to match her name, and whose name I remember partly because she wrote it on the markerboard, and partly because she was one of the few repeated contacts during my stay. I did not get her name at the time; she took my vitals without waking me, Lauren reports.
When I did wake, Wednesday morning, probably around 8:00 AM, I was blessedly, mercifully without pain.
Let me repeat that: THE PAIN HAD STOPPED. My wish for the year, fulfilled.
I had some discomfort and sensitivity, but it was really quite minor. The persistent headache, which I began to attribute to caffeine withdrawal, was my most predominant discomfort. And there was INFORMATION. At last. The CT scan had revealed some inflammation of my gallbladder. They had not been led there earlier because, despite a lifetime of consuming poisonous sugar in carbonated beverages, my liver values were solidly normal, and usually the liver is impaired when the gallbladder has issues. To see exactly what was going on, they scheduled a HIDA scan (which I kept hearing as "hydra scan") for later in the day. Out of pain and having the start of a clue as to the problem, the crisis part of this story essentially ends. Lauren headed home to tend to her wonderful dog whose age gives her needs that require specific tending, and to get a proper sleep from her long travel and her own stresses. I had been planning on helping her recover from her trip, not to have her forced to support me instead, and to take care of herself alone. The timing of this crisis: not ideal. Needs a better scheduling algorithm.
The HIDA scan was mostly uneventful. They injected some kind of tracer tagged with Technetium-99m, which emits a reliable gamma photon, apparently resembling an X-ray. The imager in fact looked just like an X-ray box. I laid on my back under it for an hour, then on my side for an hour. Mostly, I slept. They woke me and said they weren't seeing some things they had expected to see, and had Claire come and give me more morphine, which apparently kicks something in the system ("sphincter of Oddi", says Google), and then repeated both scans. Again, I slept through two more hours of exciting gamma-ray imaging of my hepatobiliary system, and then was returned to my room.
Two of the three doctors from the morning consult returned in the afternoon. My whiteboard was adorned with a crude illustration of a liver, a gallbladder, and some ducts connecting them. I was told that the HIDA scan had shown things flowing into the ducts, but not into the gallbladder, which clearly indicated that something ("sludge" is apparently a real medical term) was blocking the entrance, and that the gallbladder had turned into a badly maintained hot tub of infection, which is why I was being treated with repeated doses of IV antibiotics. (Also should mention: grateful for lack of allergies, especially to helpful compounds). I remember the phrase "elective surgery" as a possible option, and I was told to expect a consultation with a surgical resident, perhaps even the Chief of Surgery.
Instead, I was wakened around 5pm Wednesday by an anesthetist, seeking information and signed permission for a surgery that had been scheduled for 7:30am Thursday. That no one had told me about yet. He suggested it might have been a speculative scheduling to grab the time slot. I responded to the questioned, signed off on the anesthesia, and asked the nurse (Claire!) to find out what was up with the surgical consultation.
The headache continued. I'd had nothing to eat since 8:30am Tuesday, and little to nothing to drink. (Ice chips, the water off them, and the occasional sip of water for pills.) I'm not a good person when I'm hungry. I apologize to anyone who's been on the receiving end of that. I had been given a clear milepost for the path to getting well, and that milepost did not appear. Claire pressed my case to the surgeons. She reported "surprise that anesthesia had gotten there so quickly" and apologized on behalf of the surgeons. I expect that making up such apologies is among a nurses normal duties.
The anesthetist had reported that my cut-off for food was midnight. I had begun to imagine that I might be able to get something to eat in the window between now and midnight, but that delaying would prevent that from happening in time. I was frustrated with hunger, and headache, and not knowing quite was was going on and why.
I realized that it really is a miracle that the hospitals pull off, mostly, in the distributed, collaborative care necessary. There is an astounding amount of communication and process required to pull that off. In my job, we can come out of meeting with completely different interpretations of the plan or design that was agreed upon. That would be utterly disastrous in medicine. Communication is really fucking hard to get right all the time.
That said, at around 10pm, a surgical intern appeared in my room. He was clearly and unmistakably exhausted, with droopy eyes, was not involved in my case, and when asked to confirm the surgery time, could not find it after rummaging on his cell phone for a while. I was angry and scared and frustrated, but I tried really hard not to take it out on a guy who clearly had gotten stuck with the job of coming to deal with me when the consult I expected was either miscommunicated or fell through. When pressed on the food issue, he first tried to plea that I wasn't their team's responsibility yet. Pressed again, he said I could have it, but it would probably bring back my pain. I chose to fast.
One thing he did communicate was that I really had little option with regard to "elective" surgery. The only other treatments were temporizing moves used when surgery was not immediately possible. The other end of the spectrum was "emergency" surgery, the "open" form of which had been the culmination of Lauren's health crises at the turn of the year. Our house, it is not a good one for gallbladders, it seems.
So now, Wednesday night, Thursday morning. Waiting for the team the anesthetist predicted at 5:30am or so. Did not happen.
New nurse shift at 7am. I think around 8am, possibly later, I was wakened by five people entering my room. They confirmed my last name (mispronounced, but that's nothing new in my life. They asked if I had any previous surgeries. I said no. They announced that my gallbladder would come out, or something to that effect, turned, and left. I don't think I had even finished sitting up in bed. No identification. No hello. No goodbye.
Herein begins my meltdown moment. Surgery was being planned and scheduled for me. Without involving me. Without my informed consent. Without communicating with me as a person. I am stubborn as fuck when I feel I'm being manipulated or mistreated. I will walk away and refuse shit, sometimes even to my detriment. While I had been expecting and prepared to agree to surgery the previous day, I was now expecting a scene where they hauled me away, covered only in the "johnny", and handed me the form in front of 20 people, telling me to sign here now. Had that actually happened, I would have said "no", I suspected. I began to be stressed about even the prospect of that choice. Hunger, headache, and fear.
Lauren was home, resting before her own previously-scheduled engagement at the hospital. I did not want to call and wake her to engage her as my defender. I did not want to confront the people I was relying on to fix me with my anger, which I could neither hide nor swallow. I decided to call the hospital operator, to find out if they had an office of patient advocacy, and to ask for their help. The phone was in my hand, undialed, when a new doctor came in the door.
She was another member of the team that cared for me the previous day. I unloaded immediately upon her. She was understanding, and sympathetic. She was confirming that there was in fact a patient advocate, I think, when someone new walked in through the door. The promised and heralded Chief of Surgery. And though much later than I had been given to expect or would have wished for, I got another, even more detailed explanation of the condition of my gallbladder, the nature of "sludge", and of the laparoscopic surgery that I would undergo. I hadn't in fact been scheduled for 7:30. I was a fill-in-the-gaps sort of job, and they would take me in a spot that best fit the other procedures happening that day. The Chief guessed mid-day, but it would in fact turn out to be late afternoon.
Late in the afternoon, we bagged up my stuff, and I was wheeled off to the OR waiting lobby. Russell J. Nauta, the Chief, appeared in scrubs, instead of a suit, with the permission form, with risks listed. He explained them well. He told me the odds that they'd have to covert to an open procedure were generally around 5%, but that I had low risks for them. I really didn't want to wake up with the wound that Lauren had to recover from, and its associated long recovery time. It was nothing like the horror scene I had feared in the morning, in my confusion and weakness.
In the waiting area, they converted my IV to one with more ports. They used it to give me an anti-anxiety drug or some such, which made me floaty as they wheeled me into the operating room. I remember no details of the room, the people in it, or any interactions with any of them. Either what they had already given me kicked in fully, or the later anesthesia interferes with memory formation, I guess. Some quick Googling didn't really give an answer, just that some people seem to have some really awful long-term memory effects from it. I've even wondered a bit whether some of the details from the past few days that seemed so vivid at the moment and that I don't remember are my normal flaky memory, or were helped along by some of the same effects as my non-recollection of anything past the inside of the door of the OR.
There is not much drama to the surgery, and not much cause to have been worried about it. Wiki says there are 600,000 cholecystectomies in the USA annually, making it incredibly common. Most are laparoscopic, like mine. The procedure was invented in 1985, by a German doctor. His findings were rejected by his colleagues. It took years for the non-invasive techniques to be accepted, and his contribution was originally denied, from what I've read. The risk of complication is amazingly low. And I had all this information available to me, thanks to a different sort of miracle. In the mid-80s, I had a co-worker who was injured I think in her duties as a volunteer ski patroller, and her colleagues and friends jumped through hoops to arrange Internet connectivity (by a T1 line!) for her while she was laid up in Stanford hospital. They all believed it was a first; I had no reason to doubt, and no way to substantiate the claim. But another first of theirs is documented here; I wouldn't bet against Hania.
Me, I managed to grab my little iPad mini before leaving for Mt Auburn. That, and the ubiquitous guest internet in the hospital, let me tell my work supervisor/oldest friend I had been scheduled for surgery, told me that the surgery I was going to receive was common and so safe there really was no point in venue shopping it, allowed me to discover that the man performing my surgery was a Professor at Harvard, and kept me distracted from my troubles by allowing me to watch (live!) a man in Australia who calls himself Wyld build a fanciful cow-powered base in a game called Minecraft, in a virtual world on a machine in his home on he other side of the world from me. This is the future, 30 years into the ages of both the Internet and of laparoscopic cholecystectomy. I lived in both, this week.
My very own laparoscopic cholecystectomy went well. My gallbladder was quite inflamed, and required an additional 5th minor incision. I have a semi-circle of small bandages across my lower right belly, and a larger one in my bellybutton. I look like I've had the worst salon hair removal treatment ever, with a badly shaved belly, and hair missing in patches all over my chest from where the sensor pads were ripped off unceremoniously in the recovery room.
I was allowed food as soon as I got out of surgery. I broke my fast with lipton broth in a cup or the equivalent. It was marvelous. Best ever. Had seconds. The late afternoon surgery meant food service had already closed for the night, which meant only a box lunch with an atrocious turkey sandwich. That I did not eat. Lauren went on a quest to get me cookies and milk. I requested Vienna Fingers or Pecan Sandies. She brought both. I am blessed.
The late surgery also became an overnight stay and a late morning departure, unfortunately. I was getting fairly stir-crazy to be released, doing laps of the various wings of the third floor. Except for some Ibuprofen for that awful headache-without-end, and ignoring whatever they gave me in surgery, I'd needed no pain relief since I woke Wednesday morning. I have a little discomfort from my various indignities, and I have be careful for a few weeks.
In discussion with one of my doctors, he apologized for the crisis in the expectations scheduling of the surgery. He expressed the issues of the nature of the interdepartmental collaboration, combined with the attempt to improve outcomes: normally, historically, my surgery is outpatient, scheduled separately. Data have shown (plural, dammit) that there are better outcomes from getting it done sooner, but getting everyone on-board with new practices, and with the changes required, sometimes doesn't go ideally. It's a good story, and I choose to believe it. And as with Hania and the first Hospital bed Internet, I wouldn't bet against it.
Lauren was still recuperating at home, and my car was still in the ER parking lot, safe, unmolested, and uncharged for. Easiest way to get myself home was to drive it home myself, which I felt fit to do. So Friday morning, almost exactly three days after my pain started, I was discharged, I walked to my car, and I drove home. Coming in the front door after having driven myself both ways was strangely like returning from a long, extended errand.
Uber-tl;dr:
I had acute cholecystitis. It hurts. A lot. You don't want to get it.
I drove to Mt Auburn Hospital. They have a lot of very good people. They used a lot of technology to figure it out.
I had a laparoscopic cholecystectomy, which means my gallbladder was removed using instruments shoved through tiny pipes in holes in my belly, watched by a camera shoved through my bellybutton. It came out through my bellybutton. Or so I am given to believe; I wasn't conscious for it, and it didn't hurt.
Even in a building full of brilliant, qualified, dedicated people, communication is hard to get perfect, especially when suffering, vulnerable people are party to it. That hurt, too, but was also survivable.
I'm fortunate and privileged to have had this level of care. I don't even want to try to imagine right now, what this experience would have been like without that.
I hope that everything else in my body isn't going to start breaking down immediately now that I'm 50 and out of warranty. There are probably some things I should be doing (and things I know I should have been doing) to help with that.
I'm lucky to have someone who cares about me, and who despite driving for many hours on a very exhausting, burdensome trip, came to the hospital late at night to be with me and comfort me. Her name is Lauren, and I usually remember that without it being written on a whiteboard.
Hospital oatmeal is criminal.
That is all. Be well, y'all.