Monday, March 30, 2009

Two Weeks Post-Surgery: Movement

I am more mobile than last week in the sense that I am more confident on my crutches. Other than that there is not a significant amount of progress. I am in good shape for crutching -- prior to the surgery I did a lot of step-ups onto high platforms, squats, lat pulldowns, rows, triceps dips and other "crutch muscles" exercises, so I actually have not felt much difficulty crutching due to fatigue/weakness of any of the supporting muscles. (That said, I don't do much crutching other than around the house for necessary tasks only.) The real difficulty is with the muscles that were affected by the surgery in my right leg, as I describe below in the bit about the stairs.

I'm concerned sometimes that I accidentally put too much weight on the bad leg, or that I create too sharp an angle at the hip by leaning forward in a chair, for example. I left the hospital with instructions to keep the angle between my torso and thigh between 80 and 30 degrees (with 0 being flat out as when you stand up straight or lie down flat on the floor, and 90 being your knee brought up so your thigh is perpendicular to your body). So my concern is that I might accidentally push the hip a bit too far with weight-bearing or the angle, since I'm protected by the painkillers.

Or I might just fall on my face, like I did yesterday. I was waking up from a nap, and clearly not really fully awake or coordinated. As I got up from the couch and reached for my crutches, I lost my balance and fell forward. I caught myself mostly with other limbs, but I did land moderately hard on the floor with my right (op-side) knee, jarring my operated hip. It hurt right away (even through the painkillers) and of course I instantly panicked that I had done some sort of significant damage to my hip or hindered the recovery in some way. It feels OK today so maybe I am not made of porcelain. But lesson learned: wake up, THEN stand up.

I know I'm being a bit overly cautious, but I just really want to be very careful and treat my hip as properly as possible during this healing time, especially when it is so early and everything is so loosey-goosey in there; I feel like the slightest mistake (like clumsily falling) might cause some small setback or damage that would prevent the joint from healing as strongly and solidly as possible. I'm afraid that pushing oneself too hard and pushing the boundaries of healing too soon could create microscopic weaknesses in the healed joint that over time could cause pain, problems, and potentially more surgery. I want to heal this hip once, well, and for GOOD. (And then do the same thing to the other one.)

My current movement project is going down stairs -- as we know last week's breakthrough was sliding my right (op) foot forward using the hip flexor/upper quad when taking a step forward with my crutches. Going down steps is a slight variation on that, as I put the crutches on the lower step, place my right (op) foot on the lower step, then (with all my weight on the crutches) bring my left (non-op) foot down to the lower step where my crutches and other foot are. So the additional difficulty here is that rather than just sliding my right (op) foot forward, I also have to use muscles around my hip to support the entire weight of my right leg while the right foot is in mid-air over the lower step before I place it into position.

Previously I had either cheated by slithering my foot over the edge of the stair and down onto the lower stair (i.e. never losing contact with the ground) or having someone place my right foot on the lower stair with each step. But by now my hip flexor/upper quad muscles are strong enough for me to place my own foot on the stair below (sans slithering or assistance) for several steps in a row. This morning I made it down almost all of the 13 stairs down from the upstairs, so that was a pretty good achievement.

I still need help getting into and out of the shower (there is a high lip that I need help getting over with crutches, plus there are zero handholds to grab on to for support), but I can shower myself using my shower chair. Although a shower feels fantastic, the entire undressing/getting in/not falling off the shower chair/getting out/drying myself with all weight on left foot/redressing process is sometimes an exhausting ordeal, so the glee can be somewhat tempered.

I have been fine with using a normal toilet since I got home. I think this is due to my pre-surgery leg workouts -- my left leg has been doing quite well at lifting my entire body weight from various seated positions even when there is not really enough support for me to use my arms to assist.

Similarly I never got myself a leg-lifter to position my leg; I just grab it by the knee and move it around with my arms. To make small adjustments to the position of my lower leg I have been using an excellent trick I read in someone else's blog -- slip the non-operated side's foot under the ankle of the operated-side leg and use the good foot to adjust the position of the lower leg on the operated side.

I am perfectly comfortable sitting in an armchair with an ottoman for hours. I can sit in an armchair without an ottoman for a while as well, as long as I can slouch a bit. Dining room and kitchen table chairs are less comfortable, mostly because they involve eating (i.e. leaning over the table) and that causes greater-than-80-degree hip angle problems. I solve the angle problem by sitting on the edge of the chair and angling my thigh down towards the floor, with my foot under my chair. But as you can probably imagine, that is not all that comfortable for long periods of time either, so I prefer the armchair route.

The leg-under-the-chair solution is also helpful for getting up from armless chairs or other seating positions where there is not a lot of support nearby for using my arms to help me stand up. With my right leg under the chair and my right knee pointing 45 degrees towards the floor, I can lean forward to use my body weight to help me stand up using just my left leg, without creating an overly acute hip angle from leaning forward.

There has not been much progress in sleeping positions. As last week, I can sleep on my back (with two pillows under my right leg) or on my left side (with two pillows between my knees and one between my ankles) for long periods during the night. I can switch between these positions by myself, although it is not something I can do in a state of half-sleep, so I do still wake up several times per night to make these switches. Last night I must have been dreaming something topsy-turvy because I woke up in the midst of an attempt to turn on to my right (op) side to sleep. I did complete the turn, figuring I might as well try lying on the operated side, but that experiment lasted about one second, as it hurt immediately and not insignificantly.

Although I can't move all that much, my spirits are still high. I'm in a good mood most of the time, and I'm never bored. I have so much to read (books, magazines, newspapers, blogs) and so much to watch (Netflix! Hulu!) that the days pass quickly. I've also started to log back in to work this week, but so far I've just been responding to two weeks of emails and trying to get my inbox back in order.

Two Weeks Post-Surgery: Pain & Medication

My pain is generally well-managed but there is a lot of it still lurking below the painkiller block. When the pain does break through, it has usually moved to one or another of its favorite places to surface -- sometimes over the incision, sometimes on the outside of my hip, sometimes deep within the joint, sometimes at the top of my iliac crest (where I think there is a screw head), sometimes in the back of my hip joint (deep inside behind the bottom of my right buttock), sometimes shooting itself like a racing stripe down the outside of my thigh, knee and calf.

There is still a numb spot about the size of my hand on the outside of my thigh, right below where the greater trochanter of the femur sticks out to form the widest part of the hip. The numb spot is normal; Dr. Millis said they have to move a significant nerve aside when they are doing the surgery, and this causes some damage to the nerve that gradually repairs itself over a few months. But there will be a steadily receding numb spot there until the nerve has completely healed.

My incision is usually the least of my problems. It is not generally tender, but it itches sometimes under the dressing, and as I mentioned above, it does sometimes hurt. We changed the dressing two days ago, so I saw the scar (through the steri-strips, which means I didn't see much). Not much to report until I really see it when the dressing and the steri-strips come off. The dressing is set to come off this Thursday.

There does not seem to be much swelling at all in the hip area or the leg on my operated side. I am not even sure there was that much swelling in the hospital.

My current pain medication regimen is:

-- 1 Oxycodone every 5 hours during the day
-- 1 Oxycontin twice daily
-- 1 Valium at bedtime
-- 1 Valium kept at bedside if needed for pain during the night

Some PAO bloggers I have read have been on less medication (or less frequent dosing) by this point in their recoveries, so I'm not sure why I'm still needing such high or frequent amounts of pain medication. I have, on occasion of missing a dose or taking a dose too late, had breakthrough pain, and it is not at all tolerable -- about a 5 on my pain scale if I let it get too far. Since leaving the hospital I have stepped down to one Oxycodone every five hours instead of two every four hours, and have switched to taking Valium at nights instead of Oxycodone.

Unlike others, however, I don't find the painkillers make me feel mentally foggy in the slightest. Only Valium makes me a bit scatterbrained and sleepy, which is why I take it at nights now and leave the Oxys for the daytime. But on the current regimen I have been reading varied, mentally stimulating books and magazines, playing (and winning) fierce games of Trivial Pursuit and staying generally awake and alert all day, save an afternoon nap. So I'm in no rush to get off the pain killers for any philosophical or mental acuity reasons, I just find it interesting that others have weaned off them tolerably so much more quickly than I seem to be doing.

Of course, one must consider that my surgery took seven hours rather than the four and a half hours Dr. Millis had originally predicted, and my bones were, according to him, incredibly strong and difficult to cut. I have five screws rather than the usual number of three most often used in these operations. Also, I came out of surgery with an elbow injury on top of the hip situation (and then there was the heat rash!), so maybe my body's healing department has had a lot a lot of balls in the air and that is why my pain has been persisting longer than that of my PAO peers. Or maybe everyone is different in their healing and it is what it is.

Speaking of heat rash, I've been applying the prescription rash cream twice daily since I left the hospital. The dragonhide that formed after the fiery welts I had in the hospital has completely flaked off by now and the marks of the rash are reportedly looking much better and almost dissipated.

The itchy-red-spots problem (which apparently is a side-effect of the pain medications, although I have not read of similar reactions among any of my PAO peers) persists, but seems to have been lessening steadily. For that I try (usually unsuccessfully) not to scratch at the spots and I apply Gold Bond lotion twice daily. Mostly it feels like I have a mild but chronic case of chicken pox.

I am also still taking the Atarax pills (twice daily) that I was taking when I left the hospital for the itching/spots. I think I will reduce the Atarax as the pain medications are reduced.

I was never given Lovenox or even Coumadin at the hospital, just aspirin, so I keep taking that once daily to keep my blood thin and clot-free as I'm healing. I stopped wearing my TED stockings after a few days at home. Even in the hospital they weren't very tight and didn't seem to be doing anything that a pair of drug-store knee-highs couldn't do. Plus, no one told me I had to wear them when I got home.

Thursday, March 26, 2009

First Week Home

I've been back at home for four days now. The routine is really one of keeping me comfortable, clean, and as pain-free as possible. I would not say I have been progressing in leaps and bounds.

The pain is variable. At times it is quite bad and I am unable to focus on anything else until the medication kicks in; at other times it is more manageable. Sometimes the variation seems to be related to movement (crutching around, showering, etc.) but sometimes not. I suppose that is how it is these first weeks when things are shifting and mending and moving about in there.

When I was first taught to crutch by the PT tech at the hospital, the instruction was to put all weight on the left (non-op-side) foot, move the crutches forward a foot or so, slide my right (op-side) foot forward (toes slightly up so as not to snag on the carpet) until it is even with the crutches, then lean almost all my body weight on the crutches (only bearing 1/6th of my body weight on my op leg -- basically the weight of the leg itself) and follow by bringing my non-op-side foot even with my op-side foot and the crutches.

At first I couldn't slide my op-side foot forward at all. The muscle just wasn't there. I would stare at the foot and try to THINK it forward but I just couldn't get any muscles to respond to slide it forward. I had to get the foot where it was going by leaning forward so the weight momentum would swing it forward to meet the crutches, or by creeping forward along the floor with the toes, or some other cheat.

But by now whatever hip flexor/quad muscle was not firing before is working to slide my right foot forward as I crutch. So that is progress! I can slide my op-side foot forward six inches across the floor. Trophy please!

Crutching is very tiring. Standing on one leg is also very tiring. Pretty much everything I do that is movement requires so much effort by every single part of my body except my right leg that I am exhausted after the smallest feats. A shower, a staircase, a switch of positions... all of it requires a rest period afterwards, and sometimes some Valium if the movement has caused muscle cramps or extra pain.

I can sleep on my left side for long periods (i.e. more than an hour = long) during the night and switch from lying on my back to lying on my left side on my own. It is neither easy nor comfortable to do so, but I can do it. There are times when sleeping on my left side is far more comfortable than sleeping on my back, but combining the words sleeping and comfortable is still an exercise in oxymoronism.

I have not made any progress at all with the itching, however. I must be reacting to one of the medications, but I just itch all the time. Not the same as the heat rash, but just like itching little red bumps everywhere. I am still taking Atarax (which I was taking in the hospital for the heat rash) so the itching is supposedly being controlled, but you could fool me.

Another strange thing I have noticed is wild temperature fluctuations. I swing from freezing cold to complete hot flashes in what seems like fifteen minute intervals. Makes dressing very difficult but I'm learning to love layers. I think this must also be some some sort of medicine reaction.

My dressing is beginning to peel off so I've got an email in to the doctor to find out when that can come off. It is pretty much deciding the timing itself at this point, but I don't want to just rip the rest of it off without his permission.

Other than that, no news from the home front.

Tuesday, March 24, 2009

Transitioning Hospital to Home

Saturday involved more physical therapy, now including walking with crutches, as well as in the parallel bars. All of it is still very very tiny amounts of movement -- 3 stairs here, 12 crutch-steps there. Nothing like what I'm going to have to be prepared to do when I go home. They train you "how" to do the motions but they don't work on strengthening you to handle how much your muscles are going to have to be doing by the time you are moving. It is all well and good to practice 3 stairs, but my house has 13 to get from first to second floor. But I suppose form is most important; I'll have plenty of "on the job" training as soon as I get out of here. I was not sent home with any PT "prescription" or any discussion of types of exercises I should focus on at all.

Today (Sunday) I go home around noon, after having spent seven days in the hospital (including the day of surgery). By now my pain is pretty well managed with oxycontin and oxycodone. My PT is progressive in the sense that I can now walk more steps and even handle some stairs, up and down. But the heat rash itching has not gotten any better despite the creams and powders.

Last night I managed to fall asleep on my left (non-operated) side for about an hour, but had to be rescued like a beached whale when it was time to be rolled over onto my back again. Of course when I woke up I had that same strange "where am I" feeling I always have had in the hospital, and the concern that I'd woken up in a dream (rather than FROM a dream), if you know what I mean. That has happened to me more than once while here at the hospital, like there must be some other alternate reality that I am missing just before I wake, and in that other reality I don't wake up every day in a gown on a gurney scratching my back raw. Also -- and this must be the drugs -- every time I wake up I feel like I'm in a different room. Very similar to my other hospital room, but a different room nonetheless.

The doctors came by early this morning on rounds (as usual) and I was completely out of it and falling asleep in the middle of conversations (as usual). That is so very embarrassing. Patients are never nodding off like junkies in the middle of coversations with Dr. Gregory House, for example. Unless it is important for their differential diagnoses.

I am ready to go home. I don't think this hospital bed has much more to offer me (other than the trapeze, which I will sorely miss).

All the paperwork has been done for my release; Dr. Millis himself wheeled me to the door and wished me well (I'll see him in three weeks for follow up anyway) and was very sweet about everything. Some of the nurses seemed genuinely sad to see me go, and say that they have requested me as a patient for next time (which I have to think is a lie, can you even do that?)

My mother and I got on the road about 1pm and stopped for a coffee/restroom break at McDonald's on the way. It was my first time in public on the crutches and it is just a joke how slowly I move on crutches. People must think I'm kidding -- I look healthy and strong enough, and yet I'm heaving like a cast Clydesdale and I'm moving about 6 inches a minute. I couldn't make eye-contact with anyone at the McDonalds because I have to study the ground for each step and think so hard about my muscles, so I don't know if anyone was staring or not, but this one poor kid did have to hold the door for me for like 5 minutes as I snailed my way through. Bet he regretted that one.

The drive home was about three and a half hours; my leg kept jiggling or bouncing with the car's movements, plus I missed a painkiller while I was asleep during the journey, so needless to say I was in a world of hurt and exhaustion when we pulled in the driveway. It was all I could do to make it up the back steps to the den and pass out on the couch. After a while I had mustered enough strength to make it all the way upstairs to my room to sleep again.

Friday, March 20, 2009

Recovery Day 4 -- Exit Wounds

This morning I was up by 7:00am, which is pretty much the earliest I have woken up and stayed up since I got here. I was still furious about the back issue when I woke up, which is never a sign of rationality or an omen for a positive day. My lower back and flanks were still raw and itching terribly, damp and nubbly feeling when I scratched them; I could feel the angry rash forming. This discomfort was keeping me distracted and furious, like a six on my pain scale. I'd never intended the pain scale to apply to more than hip joint pain, I tell you that.

The nurses arrived and got me back in my CPM machine (which itself is not annoying or uncomfortable). I let them know that overnight my back had continued itching as if I'd been sitting sat naked in a poison ivy beach chair for three days. I'd tried shifting position, having sponge baths and salve creams applied but nothing seemed to ameliorate the horror. Only the IV-administered itching drugs could (temporarily) keep me from trying to claw off my own skin.

The other thing that bugs me about being so uncomfortably itchy is that I know I am moving my operated hip too much and putting it in non-optimal positions while trying desperately to talc, salve or sandblast my back and flanks. I can feel that I am causing my hip extra pain and I worry that I am delaying its healing because I am unable to focus on protecting the joint in the face of eliminating the raging discomfort on my skin.

Dr. Sankar came to see me at around 7:15am. I am just so so angry today; everything is making me furious. Before I was sad and pathetic and self-pitying, but now I'm just pretty much pissed off. Pissed off at how much I am itching and really pissed off at having to use the bed pan. I'm pretty sure I have already explained properly how f'ing pissed off I am about the bed pan.

At 8:45am the physical therapist came to help me practice getting from the bed to the recliner chair beside my bed. That was an ordeal which involved me supporting myself on the trapeze and swinging my good leg to the ground, followed by the physical therapist supporting my bad leg, following my lead to keep my bad leg in the correct alignment to the good leg all the way to the floor, so that eventually I would be sitting on the edge of the bed with both legs hanging off towards the floor. Or at least that was the idea.

What actually happened was that I swung my good leg to the ground but the the PT-held bad leg lagged behind and so was shifted from its usual angle and caused a painful bursting feeling within the joint. It honestly felt like a small water balloon had burst within my hip joint. I gasped and swore and instantly began crying hysterically. Partially because of the pain and surprise, partially because of the fear, and partially because of the (probably unwarranted amount of) hatred and blame I immediately directed towards the PT-tech who had ruined the whole maneuver (in my opinion). When I finally got settled into the chair, I refused to work further with the PT tech and refused to move from the chair until 11am. Which behavior is probably why I was appropriately sent to a children's hospital to have this surgery.

By 11 my tantrum had run its course and so I moved to a commode chair (basically a chair made of a high toilet seat with arms and legs with wheels), which could be rolled into the bathroom for me to shower in. The commode chair could also be rolled over the toilet to allow me to use the toilet like a normal person without the cursed bedpan scenario.

Taking a shower (even with the unwanted and what I considered unnecessary assistance of a nurse I did not particularly like) was quite a lovely experience. Getting back into bed from the commode chair was quite the opposite. The same logistical problem of launching a good leg onto the bed while balancing body weight on the trapeze and having a bad leg guided by a PT tech made me nervous and irritated. The PT's approach to this maneuver was not making logistical physical engineering sense to me, nor did she seem nearly strong or reliable enough to trust with lifting and guiding my injured leg in sync with my good leg. Again, I was not wrong, and she ruined it (in my opinion) because the approach she was suggesting required superhuman strength and accuracy from me and there is no way any patient could have done it. So that did make me like her any more at ALL.

So I had my horrible exit from the bed, my excellent shower and chair nap, a relatively productive 12 shuffly steps between the parallel bars and a horrible reentry to the bed. Getting into and out of bed were so scary and horrifying that it almost made everything they facilitated, including the shower, the steps, the chair, the non-bedpan urination, and the easy salving of my back, not worth the fear and panic of exiting and reentering the bed.

The whole experience made me ruthlessly dislike the physical therapist and her every appearance. Luckily the next person to arrive in my room was my friend Josh, and then Dr. Millis, who said I should be able to get out of here by Sunday noon.

And the doctor told me to drink my milk of magnesia. All everyone wants me to do here is drink milk of magnesia, drink miraplex, consider suppositories, blah blah blah. I haven't eaten a thing since Sunday night, so whatever is in my intestinal tract is not exactly a Hoover-dam type blockage. But clearly the whole team is freaking about my GI tract so I'm drinking my f'ing magnesia people, relax.

Friday night I got my second blood transfusion along with what turned out to be an accidentally overly high dose of oxycodone, so the entire experience was a end-of-Pinocchio-like a nightmare of blurring memories, alien-invasion-dreams, tubes of blood going into strange machines, stretched out time, slurred words and confusion. The back/flank rash was still horrible and itchy, and I kept waking up in what seemed like a different sci-fi dream. And I don't particularly like sci-fi.

Thursday, March 19, 2009

Recovery Day 3 - My Back is Covered in Magma

Today my linens were changed again, but this time Dr. Millis himself was smart enough to be there for the actual changing -- I think he knew I'd throw a fit (because last time I was so nervous about the moving around and the sea-mammal-lifting scenario) and that my pride would probably cause me to suppress my panic in front of the head of the orthopedics department and therefore allow the deed to be done. Again I question why my linens needed to be changed less than 24 hours since their previous change. But anyway.

There were a lot of people around (male and female nurses); Dr. Millis was distracting me by talking about various unrelated things and giving me various meds while others were messing with the bed around and beneath me. So it all went far less terribly this time than my apprehensions had suggested. It also helped that my left elbow had healed enough that I could lift myself with its help from the trapeze, unlike last time.

My epidural was also taken out today, which was far less painful than I'd anticipated it would be. I suppose the epidural itself inside my back was quite small -- although I will say that it did affect how you could lean back in your seat, it had to be just right or it dug into your spine in quite the wrong way. A bigger coersion to removal was the tape around the epidural site and wires -- it itched crazily (a trend, you will see). But all went well and the epidural came out just fine and left almost no mark, as the hole in my spine had been so tiny. The epidural delivery system itself had been off since the morning anyway (meaning no medicine had been flowing through) as I was transitioning from that delivery system to my new oral meds.

The real, very distressing concern I had with removing the epidural had nothing to do with pain. Without an epidural (the wires for which had kept me in bed since the surgery), I no longer had any need for a urinary catheter, and without a catheter, I'd have get out of bed to use the toilet. (Sorry, I'm going to have to discuss catheter territory here...) So far, I hadn't had to get out of bed for anything, and, because I had a the luxury of a catheter, I'd kept myself very hydrated, drinking tons of water in addition to the IV fluids I was receiving on a 24 hour basis. I happened to be on the phone when the nurse who was sponge-bathing me mentioned something in passing about removing my catheter and began fussing around down in the catheter area. (Red flag just on its own.) Hold the phone, literally. I was not about to fall for that little she's-distracted-by-the-phone diversion trick. So I got off the phone and launched into a little whining parade, asking why I couldn't just keep the catheter until I learned to get out of bed safely. But I guess catheters are often the source of infection and so they should come out as soon as possible. Given the fear I'd already acquired about moving (even just enough to change my linens), and the amount of fluids I'd been drinking (consequence-free due to the catheter), I was actually prepared to accept the risk of a UTI (everyone likes cranberry juice, right?) over a constant (one-legged) Tigger-like bed to bathroom bouncing cycle. Alas, mine was the minority opinion and so the catheter too came out.

This meant that by Thursday afternoon I'd become almost totally wireless -- no leads, no epidural, no catheter, no IV-drips (although the IVs were still in place should they need to be hooked up to something or other).

This would all have been excellent progress except that Thursday also suffered from a timing problem. The day was supposed to have gone like this: get wireless, get a pint of my own blood transfused (for extra pizzazz!), get out of bed with PT's help, learn to use the rolling commode chair to get to the bathroom, rest on laurels. But instead, something got delayed with the blood and the schedule went more like this: get wireless, wait for the pint of own blood, inevitably have to go to the bathroom but no more catheter and no training in how to get out of bed (because PT wouldn't come until after I've gotten my pint of blood, of course, which makes perfect sense in Nonsense Land). For bathroom breaks I was forced instead to choose between pissing myself or using a bedpan, both choices I had planned to put off until at least my mid-80s.

The bedpan required me to hoist myself up on the trapeze, a nurse to position a plastic bowl-type thing beneath me, me to lower myself onto it and try to pee in it without missing and pissing all over my bed (which of course, could have been an option on its own, as you recall). Lots of people have to help set this bedpan scenario up for you and so you are not exactly left with any modesty while performing the task. It is mortifying and disgusting beyond belief, and honestly should be someone's episode of Fear Factor. Personally, I chose to add in the optional pre-bedpan temper tantrum (which does not lessen the bladder's needs) before succumbing to the bedpan option. I did, however, maintain what I thought was a shred of dignity by countenancing a complete, unabated, immature and utterly satisfying fury for the remainder of the day, and going on a water strike. All of which, I'm sure, showed them.

When you think of fury, you imagine, perhaps, Yosemite Sam's ruddy, seething face beginning to shake, or the way Acme characters' faces fill up red from the bottom until the very pate is reached and "TILT" begins to flash in their eyes. I am not going to say that in a similar manner my bedpan humiliation fury was physically manifested by the pulsing, hot, Habanero-like heat rash I was to suffer for the remainder of my hospital stay, but I'm not going to deny the metaphoric coincidence either.

As you may recall, during my feverish period described yesterday, my back would pour sweat and feel like an inferno, and I would stuff as many ice packs as possible back there to try to alleviate the situation. All that heat and pressure (despite the ice packs) eventually lead directly to a horrible, spreading, angry heat rash that inspired absolute insanity in me, removing my concern for hip pain, consideration of others, desire for food, drink, life, liberty and the pursuit of happiness and replacing it with a frantic desire to rip the skin off my back with any available shredding and/or rending type object(s). This frantic heat rash condition could be controlled slightly with various anti-itch medications, but would become a background tenet of my mood for the remainder of my stay.

So needless to say, Thursday was an angry day. Not only were my linens changed again in some sort of spasm of sadistic cleanliness, my back began to boil like a hot, itchy pool of magma, my catheter was removed before I knew how to get out of bed, and my dignity was stolen and beaten and ridiculed and tossed into a bedpan in front of male nurses.

On the plus side, I did get to have a shower.

Wednesday, March 18, 2009

Recovery Day 2 -- Fail Whale

After a good night's sleep last night, I continued the Sleeping Beauty trend through most of the morning, confounding many of the various medical team visitors that came by in the morning intending to work with/on me and finding some sort of hibernating, mumbling creature in my bed.

My lucky epidural/Valium/nubain combination certainly did treat me well through the night and this morning, but when I finally woke up midday I had two problems. One was that my shoulder muscles, having been kept in the same position for two days and nights straight (because of IV lines and injury), were stiff and very sore. The second was that Phlebotomy had not been deterred and was waiting for me to wake up. Seriously? Are they playing some sort of sick darts game with me? Didn't I just give them blood samples yesterday? I was unable to feign sleep well enough to discourage them, so they stuck me again and again and again until they they finally found a vein that could give them what they wanted.

By now all the evil forces amassed against me had noticed that I'd awakened and so I was cheerfully told it was time for my bed linens to be changed. Last time I had checked, I had been lying quite immobilized on my bed linens, tangled up to several types of wires, hooked to a CPM machine, and basically inextricably attached to my bed and, therefore, its linens. I also did not particularly care that my linens were at this point a day-and-a-half old. I don't even change my sheets at home every day and a half. But the hospital cared, and so I was -- strongly against my will, I note for the record -- forced to have my linens changed.

The linen change operation can best be pictured if one imagines how one moves a large sea mammal -- an orca, say, or a manatee -- from one tank to another at Sea World. A big sling is positioned under the enormous beast and then is hoisted; the animal is lifted, fins flopping out to the side, pulleys straining, as the tank is hurriedly changed or cleaned beneath the teetering mass of blubber. Finally, thankfully, the hovering sense of disaster is abated as the humiliated and panting celaphopod is lowered back down to its bed -- I mean, tank.

My CPM machine was not replaced after the linen change, since I'd had the machine on and constantly running since immediately post-surgery. This meant that my operated leg was in a new position and that a pressure sore that had, gradually and, at the time painlessly, been created by the support bar of the CPM machine against the underside of my thigh, had begun to make itself known as the sedation masking it wore off. Quickly and excruciatingly.

Physical therapy came and did some mild exercises with my legs and feet; I ate some broth. All the while the pain from my new positioning increased, the pressure sore began to liken a red-hot poker pressing into my thigh, and, somehow, the epidural began to decrease in effectiveness (despite being raised from 8 to 10 by Dr. Millis last night.)

By late afternoon I was probably at a seven or an eight on my pain scale, moaning and crying and repeatedly pressing the nurse call button to beg hysterically for help or a shotgun. Unluckily, my mother was out taking a walk at this point, so I was literally alone, sobbing into the abyss and the nurse call walkie-talkie.

The pain began above my hip, probably where the screws entered my iliac crest just below my waist on the right side. The pain widened and deepened at the hip joint itself, illuminating all the different moving parts aching inside the joint and around it, including the muscle along the outside of the hip joint. The pain then shot down the right side of my thigh and flared out again near the lateral tibial head, narrowing and dissipating down the lateral side of my right calf. This pain was steady and totally consuming, and I couldn't figure out why it would radiate out so far from the hip itself.

I cried and moaned and hit the call button again and again. Finally, FINALLY, a nurse came and brought Pain Services, who discussed my pain and did some sensory tests to determine the coverage area of my epidural. The Pain Services team eventually decided to raise my baseline epidural to 12 and to give me a jump start on pain relief by injecting a small dose of lidocaine directly into my epidural line. Although it was not instantaneous, the lidocanine did the trick and provided me with possibly my first (and only) pain free 90 minutes while in the hospital.

Once the lidocaine kicked in and my biggest crisis was resolved, some of my smaller irritations could be addressed. I'd been feverish all day, so my body temperature had been fluctuating between chills and hot flashes. When I was hot, I was dripping sweat and had to be packed around with ice packs all over me; when I was cold, I was swathed in blankets and chattering my teeth. When I was hot, my back would itch and drip and feel like an inferno pressed against the pillows and the bed, and I would stuff as many ice packs as I could between myself and the bedding. My fever hit 102 at its highest. My back itched and overheated horribly, only worsened by the enormous ace bandage dressing wrapped around my incision as well as my entire abdomen.

Needless to say, this was an incredibly uncomfortable day. I was in pain and/or discomfort almost constantly, as well as woozy for long portions when I was on Valium to help me relax and Nubain to help relieve the itching.

At 6:30pm Dr Millis came by to remove the large ace bandage dressing and replace it with much smaller dressing over the incision alone, which relieved some of the abdominal discomfort, but not the horrible itching and damp heat on my back. I saw my incision through the stitches and steri-strips -- it looks about five inches long and not horribly disgusting. Dr. Millis said my fever was normal. He looked at the pressure sore from CPM machine but declared it didn't look that bad, which was annoying since it certainly continued to *feel* that bad.

I ate my first food (some bites of scrambled eggs and a few crackers) so I'd be able to start switching to oral medicines in the next day or two.

I would have to say that today, Wednesday, was one of the very worst days so far, and that I am surprised and disappointed that I was so very uncomfortable and painful several days after the surgery. I didn't expect the recovery to be pain free, but I certainly did not expect the seemingly increasing level of durable, multivalent misery that I would be still be experiencing several days following the surgery.

Tuesday, March 17, 2009

Recovery Day 1

Last night -- the night after my surgery day -- was rougher than I thought it would be. Despite being exhausted after the surgery, I kept being snatched from the edge of sleep by various distractions, both human and electronic. Nurses came often to check my vitals, and oversensitive monitors periodically became convinced that I was no longer breathing, which of course sounded an emergency alarm that brought people running to my unnecessary rescue. My sleep was fitful from all the interruptions, and uncomfortable because of the itchiness brought on by the epidural medications and the all the contraptions stuck to and moving on me.

In my bed, I was sleeping with two IV lines, three monitor leads, a pulse oximetry meter, rhythmically inflating compression leg wraps on both lower legs and my entire right leg in a continuous passive motion (CPM) machine cycling my hip constantly between 30 and 70 degrees. Cozy.

The 11pm nurse shift change brought relief in the form of a wonderful nurse who gave me Nubain (for itch) and Valium (for muscle relaxation and sleep) among other delights. I slept much more comfortably after that but I wouldn't call it cozy.

This morning Dr. Sankar came to see me as I awoke, and he said I looked very well for someone the morning after surgery. Phlebotomy followed Dr. Sankar, which caused me to mar my fine looks with a considerable scowl, as they pincushioned me for some blood tests. The scowl deepened when I found out these would be daily blood tests.

Then the physical therapist arrived, which I honestly thought was a joke. Seriously, how much physicality did they think they were going to be able to get out of me in this state? A toe wiggle? Well, that was pretty much the answer. Wiggle your toes, move your ankles, etc. They did ask me to isometrically tighten the quadriceps muscle in my right (operated) leg as much as I could. It was a strange sensation to be sending my leg muscles signals that simply did not seem to be received. The therapist laid her hand on my thigh and said she could feel my muscle contracting, so my efforts were not unheeded, but I was still numb to any response at all and the non-feeling was quite bizarre.

I spent most of today sleeping, probably making up for my poor night's sleep last night. In the evening the anaesthesiologist checked on my left elbow injury -- I still couldn't use it to help lift myself using the trapeze (the pole above my bed that can be used to lift and adjust the body using the arms) and I still did not have full extension or flexion. The pain was tolerable if I kept the elbow relatively still, but it was obviously a concern for the surgery team.

Dr. Sankar also came by in the evening to remove my "drain," a pair of tubes that had been left in the wound and led out to a collection pouch outside the body to drain away blood and fluid from inside the surgery site. The drain reduces swelling and aids in healing, and had been emptied several times since I'd gotten to my room on Monday night.

When Dr. Millis came up at 7:45pm, my last visitor of the night, he asked what my pain level was in my hip. I told him honestly that it felt like I had a machete driven through my groin. He thought this a sufficient enough reason to increase my baseline epidural from 8 to 10. The machete became a steak knife and the night passed relatively peacefully.

Monday, March 16, 2009

The Surgery Itself

My mother and I made the chilly, five minute, pre-dawn walk to the hospital. Right on time at 6:00am I made a point of bounding up the hospital stairs towards the Admitting department, ticking off my last "last" before surgery. In the Admitting area there were three other patients with their families checking in for surgery. All of them were kids, except for me, which I guess is to be expected at a children's hospital. They were, alternatively, sniffling and clutching a teddy bear, silent and affectless, and moderately cheerful. I was actually a bit jocular and excited, which seems an utterly inappropriate mood with which to approach major surgery.

By 7:00am we were all in the pre-op holding area, a room lined with curtained off alcoves, like stalls in a barn. In my "stall" I changed into my surgical "johnny" gown and met with the anaesthesia team. They reiterated everything that had been discussed about anaesthesia during the pre-op meeting in February.* In some PAO blogs I'd read that some patients had experienced problems with their epidurals where the wrong leg was numbed, or the epidural did not work at all. When I mentioned this to the anaesthesiologist, his answer seemed to be something like: "yes, that happens sometimes; it is tough to pinpoint the right spot; we are actually working blind in there because we are not going to bring in a fluoroscopy for a simple epidural, but we do these all the time so it should be fine." Oh, OK, now I feel better.

Dr. "Woody" Sankar came to sign my hip and Dr. Millis, sporting a green St. Patrick's Day bow tie, stopped by to answer last minute questions. He estimated he would be done with the surgery by 1:00pm. After the doctors left, the anaesthesiologist gave me "something to relax" through my IV -- I don't know what it was but it hit me almost instantaneously.

Quickly thereafter, at 7:45am, I was wheeled into the operating room and my mother was taken into the family waiting room. I didn't have my glasses on anymore, but through the fuzz I saw that the OR was full of a lot of people, a lot of tables and a lot of stuff on the tables, everything in the blue/steel/white color palette that looks so good with my complexion. I also remember thinking Dr. Millis' surgical cap was not at all like the caps the surgeons wear on Greys Anatomy.

My gurney was wheeled close to another bed, which had been piled with pillows or cushions of some kind, and I was told to swing my legs around so I was sitting on the side of my bed resting my shoulders, forearms and head on the cushions. "Try to make your back into a 'C' shape," the anaesthesiologist said.

Wait just a minute, I thought. This is the procedure for getting an epidural. I am not supposed to be conscious while getting an epidural. I am not supposed to remember this part. I am way too conscious for this. Meanwhile people behind me are telling me what a great spine I have and what a wonderful "C" shape I've made with it, and Dr. Millis and his strange surgical cap are right in front of my face talking about things completely unrelated to how overconscious I am during this epidural placement. Dr. Millis is holding my hand and the man behind me is saying "this is some local anaesthetic, just a small pinch," and I recoil from the not-small pinch and am told to hold still. At which point I think, oh God, this epidural thing really going to blow and I am far too conscious!!, but then it just a bit of pressure and it is done. The man behind me asks me if it tingles on the right side or the left side of my spine and I tell him it is the right side and I am conscious enough to know and be relieved that the right is the correct side for this epidural to work.

So then many hands help put me on my back on an operating table, and Dr. Millis puts this fleshy plastic face mask over my nose and mouth and I remember he was talking to me and holding my hand and I was frustrated because I wanted to answer but I couldn't because of the windy face mask. And then I was gone.

Since seeing me off by the operating room door, my mother had been waiting in the family area. At 9:30 she was told that all was going well and that my surgery had begun at 8:45. By 11:00am the doctor had begun making cuts into the bone but had not inserted any screws yet. By 12:30pm the doctor had discovered the superhuman bone density of my skeleton and was still cutting bone and was now estimating two more hours of surgery. By 3:20pm the doctor was almost finished and was closing the incision, but the nurse said he would not come out to talk to my mother until I was awake and moved into my bed in the Post-Anaesthetic Recovery Unit (PACU).

Meanwhile, I was coming to in the PACU in what should have been relatively pain-free awakening from general anaesthesia. Unfortunately, during the surgery my left arm had been placed in a position that normally would have been comfortable but in my case was not. The left arm had two IV lines, an arterial line and a blood pressure cuff on it, and was stretched out straight across a table, supported with pads and gel packs. Despite all those protections, my left elbow somehow hyperextended, causing straining or microtearing of the tendon attaching my biceps muscle to my radius.**

I can't even remember if I had any hip pain at all when I woke up because all I remember is excruciating pain in my left elbow. My cries utterly confounded the PACU staff who were (understandably) under the impression my hip was my most likely pain locus. All I recall from this period in the PACU is whimpering and moaning and leaking tears as people tried to figure out what was wrong with me. No conclusion was ever really reached, but I was given morphine anyway, which helped a little.

At 4:10pm Dr. Millis came out to the family waiting area to speak to my mother. He said the surgery had gone well, and that I was out and awake and feeling no pain in the hip, but that I was feeling pain in my elbow. He also mentioned that I had very strong bones, which was why the surgery took longer than expected. Dr. Millis showed my mother films taken during the surgery as the bone was cut, moved and after the five screws had been inserted. The doctor showed a comparison of my pre- and post-surgery hip socket angles -- my pre-surgery angle was 90 degrees and the goal for the surgery had been to increase the angle to at least 110 degrees. The post-surgery angle was actually 114 degrees, so Dr. Millis was obviously quite pleased with that outcome.

You can see the increased coverage of the femoral head ("ball" of the joint) in the image to the left. Compare my left and right hip socket coverage and it is obvious how much more of my right femoral head is in the socket compared to the left femoral head. Obviously all my new hardware is quite visible as well.

The doctor also mentioned that he had not used all of the pints I'd autologously donated prior to surgery, since most of my blood replenishment during surgery came from the cell saver system. But he would probably be using some of my donated pints to ease my recovery in the next few days.

At 5:30pm my mother came to see me in the PACU. I was already on morphine for the elbow pain, so my hysteria had lessened slightly at this point. She fed me ice chips while I kept trying to clear my throat of the breathing tube feeling. While she was there Dr. Millis and Dr. Sankar were adjusting my CPM machine, which I would use for the next few days.

At 7:00pm, twelve hours since I'd first hit a gurney, I was wheeled into my room on the 10th floor. Luckily, I had a private room with a lovely view. I didn't spend much time enjoying the view, though, as I was exhausted -- from the surgery, the sedation, the pain, the morphine, everything. I think I was asleep by 8:00pm.

* All quotes and dialogue attributed to medical staff at Childrens' Hospital are taken from the memories of my mother and my(drugged)self, and should not be considered direct quotations or perfectly correct paraphrasing.

**This is my diagnosis, not a doctor's. But I still think it is right.

Surgery Day - Morning

My surgery time is 7:30 this morning; I have to be at the hospital at 6:00am.

Yesterday my mother and I drove up to Boston; we stayed in a hotel last night. My mother will be staying there for the week. (For others having Boston surgeries, it is the Best Western Longwood, a block or two away from most of the Longwood Medical Area hospitals, including Childrens', Brigham & Women's, Beth Israel Deaconess, etc. There is a special rate for relatives of hospitalized patients.)

I did eat a smallish dinner last night. The pre-surgery eating guidelines allow you to eat up until midnight the night before the surgery, but they recommend having only a light meal. Post-midnight I can drink water until three hours before the surgery, i.e. until 4:30 this morning. Which is basically when I woke up from a night of pretty fitful sleep and could not fall back asleep. So I did get about a liter of water in me just under the wire.

I did not bring very much with me for this hospital stay -- I can't imagine I will need much that won't be provided by the hospital or available on site. (There is a CVS/pharmacy in the lobby of the hospital, and since Longwood is a neighborhood of hospitals and medical facilities, anything I could need is probably available within a 5-block radius.) My packing list included:

- glasses, contacts & solution
- my favorite sheepskin slippers
- cardigan sweater
- reading material
- laptop
- gym shorts
- pyjama pants
- bathrobe
- crutches (which I had leftover from a sports injury a couple of years ago)

Even that seems like a lot given that I'm not going to be able to get out of the bed for several days, much less change out of the hospital-issue gown I'll be in through and after surgery. The shorts/pants, bathrobe and slippers are really for later in the week when I'll be out of bed taking my first steps with the walker and then crutches.

This morning my first stop will be Pre-op Admitting to finalize my admission to the hospital (most of the admitting paperwork was done in February at my Pre-op visit). The nurse there will take my vitals, confirm that I have complied with all the appropriate medication/food/liquid restrictions required in the weeks and days before surgery, and get me changed into my surgery attire.

Next I will go up to the surgery floor, where I will meet with Dr. Millis and the anaesthesiologist. Dr. Millis will sign my hip to indicate which surgeon I belong to and which hip he is to operate on. (I suppose all patients look alike when supine with surgical bathing-caps, breathing tubes and billowing pastel gowns, so one must take more basic measures for identifying one's patients -- like writing on them with Magic Marker. You know there must be a lawsuit or two behind that rule.) Next the anaesthesiologist will start the IV, and hopefully that is the last thing I shall remember.

So now it is time to head over to the hospital. I feel tired and hungry and cold, and everything else you feel at 5:45am on a March morning. I have a bit of a headache; my right hip is at about a 1 on my pain scale. My left hip is at a zero today.

I am not nervous per se. Mostly I sense the culmination of an odd feeling I've been having all week, ticking off my "lasts" before the long period of recovery I will have ahead of me. Last tennis match, last day in the office, last subway journey, last night in my own bed in NYC, last walk with the dogs at my parents', last time driving a car (although the 3.5 hour drive up to Boston may have lessened the blow of that particular "last"). Today I will walk into that hospital feeling healthy and strong, carrying my own things, pushing through the revolving door myself, and bounding up the stairs to admitting in what will be my last "bounding" for a long while. It is quite a juxtaposition with how I'll be in half a day's time.

But my hips are built the way they are built; this surgery is a necessity. People have more complicated, emergent, painful, dangerous, experimental surgeries every day; some come out with outstanding results, some come out with complications, some don't come out at all. I have done what I could to prepare for this, I have chosen a fantastic surgeon and an excellent hospital; there is nothing more for me to do now other than trust the experts. The ball (of my hip)* is in Dr. Millis' court now.

*(Sorry, I just couldn't resist.)

Thursday, March 12, 2009

Pain Scale

There is, apparently, no objective pain scale to be found on the Internet. Instead there are many angry nurse blogs complaining that there is no objective pain scale. And that patients who are clearly not in agony still say "10" when asked what their pain is on a scale from 1-10.

In order to avoid confusion on this issue, below is the pain scale I will be using throughout this blog.* Maybe I will post it by my bed in the hospital so the nurses tending to me can also benefit from its clarity.

0 - No pain.

1 - Conscious of occasional discomfort in the affected area, but discomfort is tolerable and does not inhibit daily activity.

2 - More steady discomfort in the affected area, however still tolerable and not inhibiting of daily activity.

3 - Some pinching, throbbing or sharper spikes of pain in the affected area, perhaps causing a brief wince. Discomfort still tolerable but beginning to make you think about favoring that area while moving/bearing weight on it.

4 - Overall higher level of pain. Activity of the affected area limited in an effort to lessen pain. Mildly distracting but non-strenuous daily activities like talking and reading are still possible.

5 - Pain level has become distracting, causing irritability when talking, inability to concentrate on reading or other activities. You are definitely not moving/bearing weight on the affected area. Mild sporadic profanity begins.

6 - Now you are getting pretty pissed off about this pain. Where is the f'ing nurse?!

7 - Tears, gasps and desperate mewing in between sobs. Mommy evoked.

8 - Wailing and white knuckles. God(s) evoked.

9 - You begin to think you have chosen the incorrect hospital for appropriate pain management. Lawyer evoked.

10 - Someone has lit your body on fire and is now attempting to put it out by beating you with track shoes. (Flip-flopper.)

*I reserve the right to alter or amend this pain scale if it turns out that writing it while not in pain, pre-surgery, on a Friday afternoon after lunch, has led me to grossly underestimate and/or mischaracterize any or all of the aforementioned pain levels.

Wednesday, March 11, 2009

Last Tennis Match

Five days to go.

Tonight I played my last tennis match before surgery. This time last year I was playing tennis two or three times a week, and was in the process of signing up for the three leagues I played in last summer, including one that I captained all the way to Sectional finals.

In the last couple of months I've played tennis maybe once every two weeks, with mixed results in terms of post-match pain. The decrease in my tolerance for a vigorous tennis match has definitely been one of the most saddening manifestations of my hip problems. I am hoping this surgery will bring me back to the courts as frequently and as capably as ever.

That said, of course I played some of my absolute best tennis tonight. Always good to go out on a high note.

My preparations for surgery are pretty much complete. I am on track to tie up all loose ends at work by Friday; I am on my way to being packed for what I expect to be six weeks away from my apartment in the city. I have not bought any of the equipment recommended by many other bloggers -- the grabbers or the sock donners or the bath chairs. I figure I will get (a parent to get me) what I need if I need it. I already have crutches from hurting my knee two summers ago. So my bag is mostly full of books and lounge pants.

My hip pain has been pretty minimal these last few weeks. It comes and goes, sometimes not seeming related to my activity level. During tennis yesterday I felt discomfort in the back of my right hip, or maybe in my lower back on the right side as a result of some compensation for the right hip. I also felt a sort of soreness on the outside of my hip, which is unusual. And afterwards of course the anterior labrum (basically the front of my hip, right at the crease when I lift my thigh) gave me some pain, which was to be expected.

My left hip has also piped up with a few twinges in the anterior labrum a few times this week. But none of this pain has been at all severe -- usually about 1 to 2 on a pain scale -- so it hasn't inhibited my activity more than to warn me that I should think about easing up.

Mentally I've been mostly unaffected by next week's events, other than a gradually receding paranoia that I will suddenly be felled with a cold and all my preparations and planning will be tossed out the window as my surgery is postponed for months and months. But as the days count down and I remain healthy, even that worry is fading.

Monday, March 2, 2009

Two Weeks to Go

Today was my third and final autologous blood donation prior to the surgery. I was glad to see that my iron-rich diet and iron supplements had raised my hematocrit level to 13.4 for this donation. My blood pressure was low, though: 90/60. My blood pressure has been lower and lower at each blood donation. I'm not sure why, or if I should be worried about it.

In any event, today's blood donation was much better than my donation during my pre-op visit to Boston. Today I was at the New York Blood Center again and I had the same technician, Skip, as I'd had during my first autologous donation -- the guy knows what he is doing. The whole process is as quick, efficient and painless as puncturing a vein and draining a pint of blood can be, I suppose.

I have also learned my blood type as a result of these autologous donations -- I have B+, just like my mother. And my secretary, for that matter. Strange to think I have gone 29 years of my life without knowing my own blood type. Only 10% of the U.S. population has B+ so it is even better that I have three units of my own blood standing by during the surgery.

Today's autologous donation was the last preparatory appointment I had on the books prior to surgery. Now I just wait two weeks, continuing to keep as healthy as possible, and continuing with iron-rich foods and iron supplements to get my hematocrit back up in time for the surgery.

I also found out today that my insurance (Anthem Blue Cross) has authorized the surgery as "medically necessary," which is an important step in having the entire expensive procedure and inpatient costs covered. All the contact with the insurance company was handled by the hospital, so luckily I was spared much of the wrangling that some women have had with their insurance companies over this surgery. At least for the time being.