Tuesday, August 26, 2008

18 August 2008: The day of reckoning for Ignatius

What follows is more information about the uterine fibroid embolization (UFE) process from a patient perspective than you want or need to know, unless you're considering it for yourself. You have been warned.

I woke up, packed in a daze, and arrived at the hospital early, closer to 6:30 than 7:00 a.m. After a 15–20 minute wait, I was escorted to one of three curtained areas in a "holding/recovery" room. I can't say things happened quickly because it felt like time stood still, but according to the clock across the room in relatively short order I had been connected to heart-monitoring equipment and given compression stockings in sexy white followed later by boots.

The nurse asked me if I had any issues with an IV in my hand, and I replied that when I was 14 IVs tried in both hands had made them swell and that the night nurses had had to cut off my hospital ID bracelet. I couldn't say why—whether it was from small veins or from my bad habit of flexing my wrist. After palpable indecision for a minute or two as she passed from hand to elbow to hand, she finally went for the left hand—and promptly told me to stop flexing my wrist.

I was also treated to what I most dreaded—the urethral catheter. By this point, I was in pain from lying on my back (albeit with my head elevated)—and the catheter sealed my sense of entrapment. Now, between the rigid arm tethered to the IV and the catheter, I wasn't going to be going anywhere on my own. I began to wonder, not for the first time, if it were too late to back out gracefully, to say, "You know, I really don't think I want to do this. Can I please leave now?"

In preparation for the epidural, the nurse checked the pulse on top of each foot and on the inside of each ankle. I passed muster because she said, "Your pulse is strong." It's always reassuring to hear that your heart beats and your blood flows. I suppose you wouldn't hear the contrary. She marked each point with an X in what seems to be indelible marker—a week later, after several showers, I could still see traces.

The possibility of leaving was still a comfort to me even after Dr. Epidural had come in and worked his magic on my back. Dr. Atomic had recommended the epidural route, and it had been heartily endorsed earlier by the holding nurse, with much breathiness and many near-orgasmic sighs. She said she'd had one a few months earlier and added, several times, "Ohhh . . . it was nice. Ohhh . . . you'll like it." Later I saw her showing baby photos to her co-workers, so that confirmed my suspicion about why she'd had an epidural.

The curtained area to my left was hopping with visitors and chatter. I had seen the woman in the waiting room, so I knew she wasn't Oprah, but still I marveled at her evident popularity compared to my lonelinessindependence. At last I discovered that she works at the hospital. Advantage; Lots of friends and support. Disadvantage: No privacy.

To my right was someone who sounded older and resigned. I began to see this as an assembly-line operation and tried to think about anything but the pain and pressure in my lower back as the popular woman was wheeled away. I was tired from lack of sleep and felt aware but not alert, probably more aware than I should have been.

Finally Ms. Popular was wheeled back into her area, snoring stertorously. The nurse told me in a confidential and reassuring tone, "See, she slept through the entire procedure, and she's still asleep," implying that maybe I would be so lucky.

My mind was at that state of exhaustion, disorientation, and nervousness that made that kind of relaxation impossible. Even her steady, deep, monotonous snoring on the other side of the curtain didn't lull me to sleep, so I was wide awake when they came for me.

By now, my back was threatening to snap under the pressure and constraint—a situation that deteriorated when I helped to transfer myself to a flat table on which the procedure was to take place. One of the nurses, sensing my discomfort, asked if I wanted a pillow for under my knees, then, perhaps on cue from another nurse, added, "I almost forgot what procedure this is!" No pillow and no comfort for me.

I saw at least two nurses and a man I assumed was a doctor (he introduced himself, I'm sure) who I think later inserted the arterial catheter, but no sign of Dr. Atomic. One of the nurses shaved around the arteries on both sides, apologizing for some reason for the quality of her electric razor (I didn't notice any issues and felt the moment a little surreal).

After this I don't recall much except perhaps an occasional image or sense of people moving around. All I could see very well was an enormous device above, which I assumed was for imaging. Although I wasn't fully awake, I wasn't oblivious as under general anesthesia. This passing into and out of awareness is a deeply strange sensation; there is nothing to hold onto in either realm.

In what seemed like short order (perhaps under two hours), I was told to slide myself back onto the bed. "Don't move your right leg. Don't raise your head," which made me bend my leg and raise my head. "Take your time—don't bend your leg and don't raise your head," the voice said again. The voice resolved itself into the nurse who kept reminding me not to raise my head—in vain, because I could not stop raising my head. "Don't raise your head—it puts pressure on the artery." Forget the artery—I need to see something other than the ceiling!

The next stop was my room, which seemed to be ready pretty quickly, at least in my newly distorted time reference. I had mastered keeping my head down, more or less, but periodically my right leg insisted on trying to move. I was told that it wasn't allowed that liberty for four hours, which I calculated to be at about 4:30 p.m. My. This was proving to be a long day.

By now, I was tethered to not only the IV/epidural and the urine collection bag, but oxygen as well (although I could at least remove this, which I did once or twice, probably to assert my independence). I figured out that I wasn't going anywhere at any point soon and so I succumbed to sleep, left arm and right leg appropriately unmoving.

At last I was allowed to move my right leg, which meant only that I could bend it a little, flex my toes, and take the edge off its boredom. Now I was more interested in getting rid of the catheter, which I found out would be my intimate companion until the next morning. Every now and then I would feel a burning sensation centered on it and even told some of the parade of nurses that I felt like I really had to use the bathroom—a puzzling statement to me as well as to them. As hard to believe as it may be, it was only in the wee hours of the morning that I discovered that this burning sensation was really uterine cramping and pain and that using the epidural button (which I had not done much) would keep it at bay.

Trapped as I was, there was nothing to do but try to watch TV. Of course, nothing was of interest to me, and I'd given up finding anything other than the scenic slide show by the time the patient services person came by to explain the features, if I wanted (I didn't). I wasn't in the mood for sitcoms, news, or sports.

I called my cousin's wife, then later let J. know that visiting hours were until 8:30 p.m., not that that was a hint. He duly arrived with flowers and the reassurance that I looked and sounded good (which I think he will still be telling me at my funeral). I don't remember what we talked about, probably his work, only that I wanted him to catch his train, and so did he.

I'd been puzzled by a shrink-wrapped contraption sitting on my tray, but during the night one of the nurses unwrapped it and told me it was a breathing exercise device. I found that taking a deep breath and holding it kept a ball at the top of a column, while expelling the breath dropped the ball. I tried it several times, but was horrified that I simply couldn't hold my breath long enough to keep the ball up more than a second. I don't know if I passed. It was cute, and I wish I had thought to bring it home with me, perhaps to see if I can do better now.

When I was most fidgety, I was told that my body needed rest more than anything else. But "23-hour observation" doesn't mean rest; it means 23+ hours of interruptions. Every time that I felt like I had sunk into a deliciously deep, pain-free sleep, I was awakened by one of the parade of nurses who took my blood pressure and temperature (it seemed hourly), emptied the bladder bag, replaced the IV solution and medications as necessary, and otherwise observed me highly efficiently. One even noticed that my compression boots had not been plugged into the machine, so overnight my legs received a wonderful, constant massage.

At least three times during the evening and wee hours, my blood pressure was low enough to set off the machine. All the nurses but one took my low, sometimes too low, blood pressure in stride, and I assumed that the epidural was the culprit (later confirmed when my blood pressure returned to normal shortly after it was removed). One nurse, however, seemed bothered by it and asked me repeatedly if my blood pressure is typically that low; I'm not sure she understood my tired, "I think it's the epidural." As I say, it was only during those hours that I discovered what I'd felt as an urge to urinate was really uterine cramping (I must have been more out of it than I realize) and that the epidural button became my friend.

Of course, just as I had mastered epidural pain control it was cut off at around 7:30 a.m., and an anesthesiologist and nurse came to remove it. No . . . Until then, I had been surprised by how minimal the pain had been, all things considered. Now I would find out just what I had been missing. Before they left, the anesthesiologist had me bend both legs and wiggle both sets of toes and seemed impressed by the strength of my performance.

Dr. Atomic arrived with another doctor, presumably a resident, whom he introduced. He gave me the rundown on the medications, told me that the worst part may be the constipation, and asked me to be "patient with the pain." Easy for him to say. I remember staring at him, feeling like I was shrinking into the bed, and thinking completely irrationally, "YOU! YOU DID THIS TO ME!" If doctors only knew. He checked my feet pulse points and told me my pulse is strong. I get the impression the pulse in my feet may be strong.

Before or after this, I'm not sure which, a nurse had emptied the bag. Ten minutes later a different nurse came in for a urine sample, looked at the bag, and said, "She just emptied that, didn't she?" I could only look apologetic. I certainly wasn't in control of output.

Later, when I was free of the epidural, oxygen, and alarmingly pink catheter, two cheery assistants straight from a sitcom audition came and told me to take a walk or several around the floor. No problem. I'll just head out the door here and . . . wobble like a baby taking its first steps. Well, looky at this handy handrail that someone set in the wall the length of the hallway. The handrail-less doors might be tricky. I made one circuit, took a break, made another, took another break, and may have taken a third. The comedians watched me, disappeared, came back, and suggested I might want to freshen up. That bad, eh?

It was now close to the 10:00 a.m. witching hour, and I thought I might be free to leave, so I asked. No, now they wanted a urine sample and proof that my urinary tract was functional. Alas, my first effort, 100 ml, was apparently not up to snuff. Next, I tried to fool them with cumulative efforts. Finally, I asked just how much they wanted. 600 ml. "Really, it may not be until later this afternoon," the day nurse said. I drank as much water as I could stand—and later threw up for the second time. Where was the nausea coming from?

Meanwhile, the pain had kicked in. I rang for the poor nurse every time I used the "hat" in the bathroom, when I vomited, and when I couldn't take the pain any more—which was horrifyingly frequent. Each time she'd call the doctor—I don't know which one—and give me a shot through the connection in my hand. I'd lie down but couldn't get comfortable. I'd walk but it would feel no better. I'd try sitting upright, but it still seized me. This pain was intense for several hours, and it may have been it rather than medication making me nauseated. Someone from dining services called around noon and helpfully asked if I would like to order lunch. No, I don't think so. Meanwhile, I'd given up 300 ml over two tries.

This was when I asked the nurse how much urine they wanted, and she said, "It was really that it was cloudy, but it's clear now, so that's fine."

Aha! So now I could go home.

"Should I call my friend to pick me up? It will take him at least an hour to get here."

"No."

“No?”

"Your pain isn't under control."

No, it wasn't. By now I had learned to rate my pain on a scale of 1 to 10. On Monday, my answers had been mostly 4s. Tuesday morning and early afternoon, they were a shaky, white-faced 10. I wasn't fooling the nurse, who had used her powers of persuasion to get me additional IV doses.

What it came down to, she said, was that my pain had to be managed with oral medication only, and I wasn't at that point yet. It was hard to argue. To prove that I was improving, however, at around 2:00 p.m. I reported once that it was a 9.5. "That means a 10."

I can't put anything over on anybody.

By 3:30 p.m., I was too uncomfortable to sit, lie down, or walk. The hospital bed and chair were too confining, and I wanted to go home and sprawl in my own bed.

The nurse was not convinced. "You don't have to leave, and I don't think your pain is managed yet," she said, accurately.

Each of us was right in her own way. My pain level was still high, despite the combination of oral and IV medications. I had a feeling, though, that if I could relax in familiar surroundings, the pain would resolve itself sooner. Reluctantly, she agreed to let me go. I called J., and at about 4:30 p.m. I tucked myself, my bag, and my flowers into the wheelchair, minding what the nurse had said. "You'd better take the basin with you. Just in case."

I still felt miserable, but I could sense that I'd been through the worst of it. As I waited more than an hour, at least I was somewhat distracted by the happier patients in the departure lounge. One couple with a newborn struggled to rein in the exuberance of two older boys. Another couple, with a woman who was perhaps a sister or a cousin, emerged from the doorway with two carriers, two blankets, and two balloons proclaiming "It's A Baby Boy" and "It's A Baby Girl." While I was killing Ignatius the feisty fibroid, others were clearly being more productive.

J. arrived, and the bumpy, stop-and-start rush-hour ride contributed to the fuss Ignatius was making in his death throes. I know I was irritable and disoriented, yet too aware of my burning belly.

I walked in the door and, after very few preliminaries, undressed and headed straight for bed. At around 8:00 p.m. I emerged, helped J. with the air mattress and sheets, took and ticked off all the medications on the spreadsheet, and collapsed again. At 11:00 p.m., I kicked J. out of the bathroom (he was just done). For the next two days, until Friday morning (he left Wednesday night), all I remember is sleeping and taking and tracking medications. By Friday morning, I felt relatively good. The cramping and bleeding seemed to have ended, and I was ready to return to normalcy—so I walked the half mile to Bonjour.

I've been very fortunate, both before and after. My symptoms were minimal in nature and impact, and after the UFE I was able to sleep away the pain in a few days. I'm not fully myself, and my lower back protests, especially in the morning. Mostly (not entirely), I don't feel that constant "itch" to relieve myself. And I no longer feel a hard mass below my navel, which had become both repulsive and compelling. I'm not sure, but I think I might make the same choice.

It's been at least 33 years since I spent a night in a hospital and four years since I was under general anesthesia. As I lay in pain, or watching the nurses about their work, or listening to Dr. Atomic assure me all had gone as expected, I realized that my hospital experiences, positive as they had been—on the whole, I'd received good care on the three occasions, at three different hospitals—had made me feel violated. In some way, it's the loss of control; in another, for me, it's the nearly instantaneous disorientation I feel in such a strange, modernistic environment. More than a week later, I still feel like a Star Trek character might whose cells have been rearranged and are out of sync with the universe. Now I imagine how strange I will feel when I return to work next Tuesday.

Footnote: I must not be 100 percent. I just fell flat on my face on the sidewalk—interestingly, a dream-fear I’ve had for a few days.

4 comments:

  1. Welcome home. I hope you reach 100% very quickly!

    The dis-connected boots reminded me of when my wife was in the hospital and the nurse set up an IV pain med. The nurse was about to leave when I noticed that she didn't attach the plunger to the syringe properly. She gave me an apologetic glance and fixed it, but if I hadn't been there, my wife would have been in agony.

    After that, I spent the next two days with her in the hospital.

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  2. I hope you are feeling better and that the sidewalk fall was not awful! ay yi yi.

    Thanks for this detailed information. I will be undergoing UFE in about three weeks (9/23) and am alternately excited and nervous. I'm sure it will be fine, but I've never been in the hospital for anything. I have a high tolerance for pain, so that should help. I just need to get a little better in shape before I go in. Thanks again for writing.
    cat

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  3. Thanks, squarepeg and cat, for stopping by. If I were a less withdrawn person, I might have noticed the boots had connectors that weren't connected to anything.

    cat—I posted this partly to give anyone else choosing UFE an idea of the details and nuances—all the things the physician and literature aren't going to go into. I too have a high tolerance for pain, but for some reason "dull pain," like cramping, bothers me a lot more than sharper pain. I forgot to get the details, but I believe Ignatius was a subserosal fibroid, positioned on top, so my symptoms weren't bad, and the recovery from the UFE wasn't, either.

    The fall was bad—straight onto my two front teeth—but my dentist and her neighbor's old-fashioned X-ray film assures me they're fine. Amazing. I'm very grateful.

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  4. While I'm not going the UFE route, I take comfort in your reading your experiences. Thank you for sharing them.

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