What the docs won’t say about surviving major surgery

When we scheduled the surgeries, my pure idiocy (obvious in retrospect) showed when I asked the doctors if I should expect to lose the entire day, or if I might be able to get a bit of work in.

Two weeks out from the procedures, this is the first document I’ve been able to type, thanks in part to the healing process and to a carefully calibrated reduction in the narcotic I’m taking: I’m still in pain, but can think, talk, generally recognize who’s really in the room, eat small meals with a minimum of piteous complaining, and publish this piece after three days of editing out as many silly mistakes as I could.

Where have I been? In bed, learning to use my totally revamped hip.
Where have I been? In bed, learning to use my totally revamped hip.

While I’ve had general anesthesia for relatively minor procedures (like a tonsillectomy) over the years, these are the most extensive surgeries I’ve ever had. I’ve appreciated the support of many readers over the years as I’ve written about chronic pain and my health struggles. The short story is that at Philadelphia’s Vincera Institute, a team of specialized doctors with their heads on straight examined me, and after a battery of MRIs, x-rays, sonograms, arthrograms, and a CT scan, decided that the real root of a lot of my pain was a compromised hip joint, ignored by every other physician, that led to a lot of scarring and damage in the muscles of my back, stomach, pelvis, and legs, as they unwittingly tried to stabilize the depraved joint. (When I signed in on the morning of the surgery, I noticed that the paperwork actually listed my trouble as “derangement of the hip.” My right hip was deranged.)

The surgeons went in to fix everything at once, loosening and reattaching rogue muscles, removing scar tissue, sewing up torn cartilage, and more. I was under for about three hours, for three separate surgeries from two surgeons who, instead of telling me, as other orthopedists have, that “depression causes pain,” looked for the source of my pain and treated it.

Excuse me, I just broke down in sobs (the meds don’t help) because I’m so happy that the trauma from the surgery has faded enough for me to open my computer again, and I keep getting these flashes of my future life, where my new doctors say I’ll be able to walk and move and work like a regular person, instead of constantly being knocked on my ass with unbearable, undiagnosed pain. With an intensive physical therapy regimen, it could all really happen within six months.

For readers and supporters who want to know more about where I’ve been the last few weeks, I’ll explain.

The recovery room

I’m convinced that when I’m under anesthesia, my brain just keeps going in its obstinate, obsessive way. “You’re waking up from surgery, Alaina! You’re waking up, Alaina,” the nurses say, and I have the conviction that someone is tearing me away from a very important e-mail, until the fire of the pain kicks in. Then, you face the knowledge that you can’t leave the ward until you can demonstrate the ability not only to not vomit, but to eat, and to pee, and you feel as if you might as well try crossing the Sahara on foot.

In this recovery room, I kept asking for my aunt, who had come to the surgical center with me, but the nurses demurred, implying that it would be better to wait before reintroducing other human beings to me in my state. I sipped gamely at a giant Styrofoam cup of water and focused for two or three hours on the Saltines someone had left on my bedside table, knowing that the swallowing of said Saltines, and the successful prevention of their re-appearance, were my tickets out of there.

In the process, I rendered six crackers into the biggest mass of crumbs known to mankind. And the nurse shot so many narcotics into my IV that I had to consciously remind myself to breathe by saying “breathe” out loud every minute or so.

Low point:

  • The shocking magnitude of the pain.
  • A dim memory of winking at my handsome surgeon when he came to check on me.
  • Discovering that someone had shaved off my pubic hair. It seems like a small, medically irrelevant detail, which is probably why it was not discussed at any of the pre-op appointments, but still, it’s disconcerting to be unconscious for a few hours and wake up sans your preferred and customary hair, even when the denuded area corresponds with some of your incisions.

Narcotics

I have intimated in the past that narcotics and I do not play nicely. So maybe it should suffice to say that the night after I’d been intravenously and orally administered Fentanyl, morphine, Demerol, and hydromorphone, not to mention at least three or four different anesthetics, was not a happy night.

The hydromorphone, paired with a prescription anti-nausea drug, helps a lot with the pain. But there are side effects to a two-milligram dose:

  • Nausea and constipation of shocking duration.
  • Loud, pervasive, creepy hallucinations that people who are not actually in the room are talking, yelling at me, or standing around staring at me with disapproval.
  • Nausea.
  • Nightmares like slasher movies.
  • Dizziness, weakness, and disorientation.
  • Inability to type.
  • Four-hour naps.
  • Cold sweats.
  • Nausea.
  • A complete inability to keep track of time.
  • Massive unaccustomed memory gaps.
  • Frequent bouts of weeping.
  • Nausea.

Low point:

  • Having a rotating team of people track all your meds for you on a riotously complicated legal pad because you are utterly useless.
  • Accidentally missing a hydromorphone dose by an hour or two and actually letting your nerves feel what it’s like to have had your body cut open in five places, rearranged, and sewn back together.
  • Being woken out of a dream in which a person is decapitated by a rogue toy helicopter to take more narcotics.

The charts devised for my care are a sight to behold. The early versions were a marvel of complicated necessity:

I can’t help but draw your attention to some of my favorite details, like one dose that was accidentally administered a little late:

THIS IS IMPORTANT.
THIS IS IMPORTANT.

There were also corners where obvious lofty organizational ambitions degenerated into an inevitably practical “fuck it” attitude, as long as things were getting done:

We are not making a mark for every damn 20 minutes.
We are not making a mark for every damn  hour or two.

The charts grew more sophisticated over time, and, awestruck, I crutched over to try to make heads or tails of them in the rare moments that everyone else was out of the room.

Urination

As an interstitial cystitis patient, I already believe that we don’t discuss urination enough. But urination after multiple pelvic surgeries? Where do I start?

Perhaps with the revelation, totally unheralded by any of my doctors, that the swelling and trauma from the operations and catheterization would lead to trips to the toilet taking approximately 40 minutes, not counting the time it took my caregivers to pull down my undies and get me seated in the agony of the sutures, after which I begged my bludgeoned bladder to release its contents.

After a few days, I noted the resumption of the ability to pee within two or three minutes of hitting the seat as a major victory, and now, my urinary odysseys have mercifully been reduced to being accompanied to the bathroom by caregivers who stand right outside the door and listen carefully for any sign of trouble, like an “ouch!”, a crutch slipping and hitting the tiles before I can stand up, or just several minutes of silence.

This is the ultimate in dignity compared to what I endured immediately post-op. If you are having pelvic surgery, I urge you to discuss this with your doctor, even if only so you are not surprised by the magnitude of this misery.

Today, as I returned to the institute for my PT, I noticed a young woman with a hip brace and crutches moving out of the passenger seat of her parents’ car to a waiting wheelchair with visible agony I knew all too well.

“It gets better!” I said as I crutched past them.

“How many days ago was your surgery?” she asked.

“Fifteen days,” I said, standing smug and solo with my crutches.

“I’m two days,” she moaned. “It’s so hard to pee!”

The fact that this, among everything else, is what she chose to impart to a total stranger in the parking lot speaks, I feel, to the advisability of the doctors’ addressing this point.

Low point:

  • Being visited at home by a coworker who announced on Facebook that I went to the bathroom by myself.
  • Attempting to pee for half an hour while a crowd consisting of no less than my aunt, my cousin, a family friend, and an extremely patient physical therapist waited just outside the door with a wheelchair and a long phone call to the nearest hotel to ensure a room with an ADA-accessible bathroom, since I was unable to travel home, yet was not hospitalized.

The gear

Another thing I didn’t realize about these surgeries is that the rehab entails an amazing range of rented gear that in any normal health system would be stored and operated by trained PT professionals and not your aunts, friends, and cousins’ bandmates. (In fact, in any reasonable health system, I’m convinced I would have spent a week or so in a rehab hospital, instead of in the care of laypeople, however loving and intelligent they all are.)

First, there was a machine called the Game Ready that was essentially half of a giant pair of shorts that wrapped around my waist to my knee on the right side, and circulated cold water across my pelvis from an electrified, insulated box full of actual ice water that connects to the garment via a flexible tube.

Without a trace of irony, one of my physical therapists holds up one half of the Game Ready before dressing me in it.

Imagine that there is a map of the entire universe and that you had to fold said map properly with a seriously injured person in the middle. That is the level of difficulty we experienced in getting me wrapped in the Game Ready post-op. Maybe we’re all especially stupid people. But when my cousin wasn’t on the phone with the Game Ready rep to try to figure out how the thing worked, it was leaking ice water all over my thigh.

The Game Ready was ultimately renamed the Game Stopper, received a unanimous veto from myself and my caregivers, and was replaced with old-fashioned ice packs, to re-emerge only in the hands of professionals at PT.  Here I am, suited up at last.

Then there was a pair of devices we called the Calf Squeezers. These were battery-powered inflatable cuffs that encased my calves and, my surgeons said, prevented the potentially fatal inconvenience of post-op thrombosis. But the batteries lasted for only an hour or two, and the compressions buzzed on and off with an irritating groan. I began to complain inconsolably about the Calf Squeezers and made a point of pumping my ankles up and down, which, I reasoned, might prevent thrombosis just as well as the damn machines. My caregivers, relieved of the responsibility of charging and applying them again and again, acquiesced.

There’s also the Continuous Passive Motion Exercise Machine, known as the CPM in professional circles, and initially known to us as The Machine Machine, to differentiate it from the Game Ready, which we called The Machine before we cursed its existence. It looks complicated, but it’s really just a painless way to restore my hip’s post-op range of motion. (For two hours a day.) Once the Game Ready fell out of the picture, the CPM became known simply as The Machine. Every person who has visited me over the last two weeks has been pressed into service to put my leg into The Machine.

View from the blogger.
View from the blogger.

A final note I feel I should share about The Machine: it came with a little faux-lambskin Velcro strap that is meant to wrap around my shin while it lies in The Machine, as if its nearly imperceptible movements would, like a mechanical bull, somehow dislodge my leg. You can see it in the picture above.

We soon found better uses for this strap, including putting it around my ankles to prevent my weakened right leg from rotating too far outward and scuttling the orthopedist’s work on my hip, and using it to hold my knees upright during a series of isometric PT exercises for my post-op adductor muscles.

Much Fine Gold in action.
The Machine strap finds its calling.

This cornucopia of uses for a formerly ridiculed strip of fabric led to a rapid shift in everyone’s estimation of it, culminating in my aunt’s paraphrasing of a Bible verse to the effect that this piece of cotton and Velcro was “yea, more to be desired than much fine gold.” Which in turn lead to the christening of The Machine’s shin strap as “Much Fine Gold,” as in, “Have you done your PT yet? Where’s the Much Fine Gold?”

My triumphal return from PT, two weeks post-op.
My triumphal return from PT, two weeks post-op.

Finally, we must not forget the hip brace, a heavy piece of work that keeps the joint in its proper range of motion, considerably lessens the pain of car rides, protects the operation site, and can be temporarily worn by punchy friends in the manner of a championship wrestling belt while you go to the bathroom.

Low points:

  • The Game Stopper.
  • Explaining the workings of The Machine to unsuspecting visitors.
  • Getting the Calf Squeezers charged and applied and turned on, only to announce that I had to go to the bathroom immediately.

Near-death experience

When you undergo general anesthesia, you sign a welter of forms acknowledging the risk that your heart will stop once you’re on the table. This never frightens me; but I did have about fifteen minutes the day after the operation during which I was convinced I was facing death without a very quick trip to the ER.

This happened after I obediently swallowed three or four pills and then endeavored to swallow a bite of hamburger, my first real food in over 24 hours. I noticed a curious sensation in my throat, and realized it was swelling up. I lay perfectly still for a few minutes, wondering if movement would restrict more of my airway. I whispered for a sip of ice water to see if it would reduce the swelling. Nope. Three caregivers were distracted, sorting pillows, on the phone to the Game Ready rep, scrutinizing medication schedules.

“My throat’s closing up,” I quavered at last. I was sure the pills I had just swallowed, on top of the propofol, Demerol, and everything else, were the straw that broke the camel’s anaphylactic shock.

The room’s activity ceased.

“Should I call the doctor?” my aunt asked.

I nodded carefully and listened to her dial while I concentrated on my breath moving in and out.

The sanguine doctor opined that if I were to have an allergic reaction, I would’ve had it already, and that swelling of the throat, once the anesthesia wears off, is a common reaction to hours of intubation during surgery. He was right. This is another note surgeons might consider adding to the pre-op appointments.

Low point:

  • Being asked, on a scale of one to five, one being a completely normal throat and five being take me to the ER right now, where my throat was, and my holding up three fingers, still afraid I was underestimating the problem.

Hand-holding

The hours, days, and weeks following surgery have allowed me to discover something I haven’t truly appreciated for a long time. Addled by post-operative shock, pain, immobility, and a wide range of drugs, I haven’t been able to cope with stress in the ways I normally would: get a bowl of ice cream, read a book, tackle some writing assignments.

But I can’t tell you the relief I’ve felt, over and over, when I put up a hand and someone is there.

When the nurses finally let my aunt into the recovery room after the surgery, and grasping her hand was like coming back to the living world. When my cousin pressed my fingers through the pain of my first PT session. When I staved off the panic of my swelling throat by squeezing a caregiver’s patient palm. When another cousin curled up on the other side of the bed to listen to some music with me and my gratefulness at her company made tears roll down my temples. When the stitches in my hip came out, stinging madly as the physician’s assistant silently pulled and snipped, and my trusted friend put his hand in mine before I even realized he was out of his chair.

When you’ve had major pelvic surgery, your dignity is going to go out the window for awhile. Someone else will put your socks on and raise the toilet seat. People will hold long conversations about the timing and quality of your bowel movements as if you are not in the room. Your friend is going to meet your aunt for the first time, and then they’ll undress you and hold you up in the shower while they wash your hair.

Your doctor will make you don blue shorts made of paper before he comes in.

One of my caregivers acknowledged this loss of dignity as if it itself is another surgery: something the doctors amputated in their quest to make me well. I’m slowly getting it back. But I hope I remember that in the worst moments, there’s no pill or treatment that helps more than reaching out a hand and feeling someone beside you.

This post is dedicated to every friend, family member, and caregiver who’s been to my bedside in the last two weeks.

Have you ever had surgery? What surprised you about your recovery? 

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14 Comments

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  1. Hurrah for the return of “Fiction need not apply.” All of this ordeal has just sharpened your wit and ability to entertain.

    I laughed out loud several times.

    I have only once had the privilege of helping to set you up on The Machine, but hope to come again soon.

    Love from an auntie.

  2. Much Fine Gold, or MFG for short (could also stand for several other interesting and apropos phrases). I just about bust a gut. And seriously, I could cry for you with the whole walking, moving and working like a normal person thing. It’s so long overdue. Love you.

    • Alaina Mabaso June 6, 2015 — 8:14 am

      Amazing, isn’t it? A lot of the time I feel like the stuff I’m really excited about (like knowing that I’ll be able to walk on any given day) is a pretty low bar, but you work with what you’ve got. xo

      It’ll be a sad day when MFG goes back to the rental company.

  3. Honored to be mentioned as one of your low points, even if I didn’t make it to the finals.

  4. dear dear Alaina
    I cried reading this. You have a knack for writing about real emotional personal situations with humorous clarity. Your obvious love and gratitude for your devoted cousins, various aunts, family and friends that have been your major supports throughout this entire event seems to mirror their obvious love and gratitude for being able to BE there for you for this major event! Lucky all of you to have such a wonderful support crew BRILLIANT DOCTORS to finally figure out what was necessary and do it…and you for your continued stamina and sheer will to continue on with the life giving techniques you so aptly described above…heres to an upright, pain free Alaina at the end of all of this..
    much love
    Gwen

    • Thanks Gwen! I will be endlessly grateful to my caretakers and hope I can pay it forward somehow. I am hearing from different people that this one was a tearjerker, for several reasons probably. I’m glad it resonated with you.

  5. How wonderful. Beautiful. Thank you for sharing, and here’s to walking without pain.

  6. Wow, Alaina. I really loved reading this! I am sending you tons of love. I’ve been thinking of you since you first started posting things about surgery and it is really relieving to read such a thorough (and wonderfully entertaining–sheesh, how do you do that!?) overview of your surgery and recovery. It brought me to tears. I love thinking of you getting cared for so constantly by friends and family. It brings to mind for me each of my births and post-partum recovery. And then I had a tendon reattached on my toe from an unfortunate paring knife accident, and for such a “little” surgery, it was debilitating and the recovery was intense. So my heart goes out to you because I just times my experience by 1000 to get a sense of the extreme pain and disorientation you’ve been through! I’m so glad you’ve had loving hands to hold yours and help. Those charts–all that care!! And the thought that after all this you could live without (or with considerably less of) the chronic pain you’ve had is just so incredibly wonderful. And I bet it feels good to be writing again. Much love to you!

    • Alaina Mabaso June 7, 2015 — 9:42 pm

      Many thanks for all your good wishes. I’m glad this piece resonated — so many people can relate to recovering from surgery or a major injury, or an event like birth.

      Yes, the charts blow my mind. I am beginning to get my brains around them. I can even crutch over and take my own dose, marking it properly. But every couple of hours, a caregiver bustles in, whips on a pair of reading glasses, and scrutinizes the Chart so nothing gets missed.

  7. Hand holding works. I remember that from my own outrageously painful experiences. Even if there not a damn thing they can do to get rid of the pain, the fact that the folks who care about you are there makes all the difference. I’m glad you are on your way back from this ordeal.

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