Friday, August 28, 2009

7 Weeks - First Steps

Dr. Mayo said on Tuesday that the gaps in my pelvis have filled in with enough healthy bone to support my weight while walking. He suggested that I start bearing my full weight on the right side but continue to use two crutches for balance and because my muscles are weak. He told me that after I build up my muscles I'll be able to drop down to one crutch, then a cane, then walk unassisted in a few weeks.

Never known for my patience, I have been trying to walk without crutches whenever possible since I got home from the appointment on Tuesday. My balance is just fine. Due to muscle fatigue I still use two crutches for long distances and one crutch for medium distances. Oh the joy of one crutch; I can go to the corner coffee shop at work and carry a latte back to my desk all by myself! My caffeine addiction, which has been dormant for 7 weeks, is now back in full swing.

When I got home Tuesday night I took a few steps without crutches, figuring it would be a disaster. I made it across the room lurching like a drunken sailor. After that I couldn't help myself; I started walking without crutches whenever I was going a short distance. Yesterday I left the crutches in the car when I got home from work, and I've been walking totally unassisted in the house for two days. I've been going up and down stairs normally (just 2 steps to get in and out of the house, and 14 if I want to go down to the basement). My right quad is a bit sore, but I can't even call it pain. I am limping due to weakness, but it's getting better each day. I can lurch really fast when necessary, although I do prefer to go slowly and concentrate on NOT lurching.

The first couple of days I could not stand on my right leg without support - it was just too weak. Starting today I can balance on just the right leg for about 10 seconds with no other support. I did this several times throughout the day - in the shower and while waiting for the elevator at work. I also tried toe raises. I could do just one the first day and now I'm up to three on my right leg with no assistance from crutches or the left leg.

I've noticed that my lordosis (swayback) appears to be much improved. Since diagnosis I've thought the mysterious swayback was my body's way of providing a little extra femoral coverage where none naturally existed. Now that I have normal coverage, my body appears to be realigning itself. I'm shocked at how much realignment has occurred in such a short period of time. My lower back, which has almost always hurt throughout my life, doesn't hurt any more and feels more stable than ever. My clothes hang differently -- almost normally! -- straight down my back, something that has not been the case since I was a teenager, when I started recognizing that I had a deformity but did not know the cause.

I can't wait to get some real strengthening and stretching exercises from PT on Tuesday. Meanwhile I will continue these first steps. Of course walking through the house with hands free means I have no more excuses for not cleaning, so it looks like tomorrow I'll be spending some quality time with the vacuum.

Tuesday, August 25, 2009

7 weeks ... 7 screws

"Damn, screwed again!"

Today was my 7 week follow-up appointment with Dr. Mayo -- the first time I've seen him since I left the hospital. X-rays look good with not 3,not 4 or 5, but SEVEN screws holding my right leg on. In this view it's hard to see more than 6, but believe me, there are 7 in there. I had no idea there was that much screwage in my pelvis. (Everyone insert their best rude/lewd comment here.)

Dr. Mayo says I am free to drive now, which is a good thing since I drove myself to and from the appointment (6 hours roundtrip). My coverage angle has gone from 5 to 30 (anything >25 is normal). The pelvic bones that were cut apart are now fused together enough that I can put all my weight on my right leg without damaging anything. However, he doesn't really want me walking unassisted yet; he wants me to wait until I see the physical therapist next week because otherwise I'll have more difficulty getting rid of my limp. My PT appointment is Tuesday and I am looking forward to learning how to walk again.

I have a long list of things I am not supposed to do for a month or two or three, and other things that I am never ever ever supposed to do for the rest of my life. The never evers include stairmaster, lunges, squats, and running. Dr. Mayo also frowns on yoga, and doesn't want me to ever do it, a bummer. Using extrapolation to ice, the never evers means I won't be doing sitspins (one of the few things I do/did well, oh well), lunges, hydroblades (ah, another thing I did well) or jumps of any kind for the rest of my life. There are a lot of dance spin and lift positions that will also now be out of the question. While I am allowed to bend my knees, anything that gets down very low and stays there would be considered a squat. I am not really sure how this will play out. This is likely to impact choctaws and my ability to generate power, not to mention how I look. I may be able to technically do the steps, but they won't look good (and they will be more difficult) if I can't fully bend my knees.

But now back to reality: walking. Must walk before I can skate. I did try walking with just one crutch and even took some steps with no crutches just to see how bad it would be. Well ... it's bad. It's beyond a limp; it's a lurch, and there is no strength at all in my right leg. It is going to be fun times in physical therapy, that's for sure.

Dr. Mayo thinks I'm doing very well so I must agree that I am. I am not discouraged, just realizing yet again what a long uphill climb this will be. Today we discussed timing for my left PAO. He thinks we may be able to do it in December, which is sooner than I thought (I was thinking February). December is great because I'd like to get it over with. I am going back in 2 months so they can evaluate my progress toward PAO#2 and then we can decide on a date in December. Oh boy, surgery just in time for the holidays!

Sunday, August 23, 2009

Cost Cutting

I am looking over the bills I've received for my PAO. I thought you'd all be amused and/or appalled by some of these numbers. Note that I have not yet received a bill from the surgeon yet!

These numbers all represent pretend money in many ways. For example, I pay 20% co-pays on pretty much everything, but my "out of pocket maximum" is $1,500 per year, meaning that most covered, in-network charges I incur over $1,500 are paid by Aetna. I also have to pay a $350 deductible. Prescriptions have their own deductible. And, if I go "out of network," there are additional maximums and deductibles. All of my care to date has been "in network" with a few things just not covered by insurance at all, such as $600 for autologous and directed blood donations.

So far I've actually paid about $2,000 for out of pocket maximum, medical deductibles, and prescription deductibles. I have also paid about $3,200 for non-insured but necessary expenses that I would not have incurred without having a PAO (blood donations, assistive devices, vitamins, pool membership, hotel in Tacoma for family members, gas to and from Tacoma, meals in Tacoma.)

The total hospital bill (5 night stay in a private room which was billed as "semi-private" and a huge list of undisclosed "incidentals") is a whopping $109,000. The negotiated rate that Aetna paid is just over $30,000. The hospital had to make some margin of profit on the deal just to stay in business. That leads me to ask, what was the true cost? Had I paid this out of pocket with my 50% cash discount the hospital would have realized an additional $25,000 profit over what Aetna paid. Luckily I did NOT have to pay out of pocket, and really, how many people would have actually paid a bill like that despite signing a payment guarantee? I was prepared to pay if necessary but I realize most people could not afford to.

In addition to the hospital bill, the charge for the anesthesiologist was in the neighborhood of $3,000 (my cost = zero since insurance covered in full). Prescriptions were billed out at about $600; my co-pay was just under $200 ($150 of that just for Fragmin which is considered by my insurance plan to be a "specialized" drug). A huge supply of narcotics only cost me $20; that's a bargain considering what each pill sells for down at the bus mall on 82nd Street. Medical equipment was billed at $600 but this does not include the CPM machine since I have not yet seen that bill (my cost for equipment will be zero because insurance will cover it all). Various x-rays and lab tests were billed at a couple hundred dollars (again, my cost = zero).

I will probably go out of network for physical therapy (see my prior post), which means I'll be paying for much of that out of pocket, about $50 per visit. Aetna may add my PT to their network but I'm not holding my breath.

The bills keep rolling in. I'll publish a grand total in a future post.

Saturday, August 22, 2009

They're Back

Blue is annoyed by the smelly new cat toys.

My skates came back from Harlick yesterday with new tongues and other refurbishments. I put the laces in and put the sharpened runners on and then tried them on (on crutches, with no weight on the right of course).

Now the skates are propped up against the wall next to the bed. I see them when I wake up. Probably a stupid idea because I won't be using them any time soon. I had hoped Harlick would keep them longer because then I couldn't even fantasize about doing the Austrian Waltz over Labor Day weekend. Now I ponder when I'll really be able to skate.

Seems like as soon as I can walk, I should be able to skate, but I don't think that will really be true. Walking will be an iterative process; first bearing progressively more weight with one crutch, then bearing all my weight with one crutch or a cane, then lurching along without crutches or a cane, and finally walking with a limp that should diminish over time. I am not sure at which point I might want to venture onto the ice. But at least now I'm fully equipped when the time comes.

Wednesday, August 19, 2009

Moving Stairs

Today I went to the mall next door to work on my lunch hour to get a sandwich at the food court. I walked in the door and was confronted by ... an escalator!! I pondered this for a bit. Would I be capable of getting on and off the thing? Hmmm. Stairs are tricky enough with crutches, but moving stairs? I opted for the elevator, which I had never even noticed before. I had not noticed the handicapped buttons that automatically open the doors either, but let's just say my consciousness has been raised.

On a totally different subject, I read the following in a study discussing how to diagnose DDH in babies and young children. The following applies to children who are already walking:

"Dislocation of both hips may present with increased lumbar lordosis ["swayback"], prominent buttocks, and a waddling gait. Physical findings may include a stable "clicking" hip."

Describes me to a "T" before my PAO. It may just be my imagination, but I think my lordosis has resolved significantly since the surgery. As for the big butt -- well, I am a skater. I think that's here to stay.

[Link to the entire article]

Monday, August 17, 2009

Six Weeks: Swim, Swam, Swum

I know that I am blogging way too much lately, but so much exciting stuff is going down. Today was my first pool outing since surgery.

I am lucky to have a warm water therapy pool just a short drive from my house. They also have an olympic-sized pool right there for when I graduate from the baby pool. For now though I'm happy as a clam floating around in the 98 degree bathwater.

I wasn't really sure what to do when I got there. Not only was I the youngest person by at least 30 years, but Dr. Mayo did not give me any pool exercises and he actually seemed reluctant to even let me go in the pool when I asked him. He said I could go at six weeks (yeah, that's Wednesday, but come on ...) but didn't tell me what I could and could not do. So I stayed with my usual restrictions. No straight leg raises or abduction or weight bearing ...

Wait a minute. Weight bearing? If I walk in the pool am I really weight bearing? In theory I am allowed to put up to 44 pounds on my operated leg. How they came up with 44 pounds is beyond me, and it's not like I am able to tell accurately how much weight I'm bearing anyway. I have just stuck with the concept of "toe touch" until now. But in the water I did some actual walking in the shallow end.

It was very odd. My body is so used to NOT walking that every time I stepped on my right leg my torso would scrunch up in a futile attempt to not bear weight. Even in the pool I had a pronounced waddling limp. It got better over time, but boy, if this is any indication, real walking on land is going to be, um, rather challenging. I had hoped walking, which I've been doing for almost half a century, would be a skill I might easily reacquire. Now I'm thinking not so much.

Over the course of an hour I did lots of floating, some range of motion exercises, a little walking, more floating, and some paddling with just my arms in a feeble attempt to get my heart rate up (kicking my legs did not seem like a very bright idea even though it's not on my restriction list).

Today was the first time in almost six weeks that I've done any activity which resembles exercise. I am sure that I overdid it. Based on the pain that's just starting to become apparent in my right groin and buttock, I'm sure I will find out in the next 24 hours just how much.

Let's get physical

I have been in search of a physical therapist who is conveniently located, takes my insurance, has worked with dancers/skaters, and has worked with PAO patients. The first three things are easy to find, but it seems none of the in-network PTs have ever worked with a PAO patient. This is not insurmountable, but I'd really prefer someone who has been there and done that. After all, this is NOT your grandmother's hip replacement, yadda yadda yadda, and I don't want the person responsible for my rehab to treat me just like the resurf and THR hippies (no offense to y'all).

I know there are many surgeons out there who don't even prescribe PT, but mine does and I think there are many things a good PT can do for me. It's not that I'm lacking in the motivation department, or that I don't know how to go to the gym and sweat. I just want some guidance. For example, they can point out that I'm limping and teach me how not to. Or, they can evaluate where my body parts might be out of alignment or unbalanced and show me how to fix it. These are all things that I might notice through trial and error, but I'd rather leave their diagnosis and cure to a trained professional. I know my body pretty well, but I don't claim to know how to fix it when it's broken.

I finally found someone out of network who has worked with not one, but TWO post-PAO patients. She clearly has a good understanding of the challenges I will face, and she said that her PAO patients both did remarkably well. I've made an appointment with her and will ask if I can contact the PAO patients as references. She is working on getting Aetna to add her to their network. Now all I need is clearance from Dr. Mayo to start PT at my follow-up appointment on the 25th. Bones, heal thyselves!

Sunday, August 16, 2009

Journey back to Tacoma

I judged a skating test session yesterday, which is significant in many ways. It required a 5-hour car trip (I did not drive, although I did drive to and from my ride's house, about 10 miles total, with no problems). It required me to crutch around an ice rink, which is not exactly even footing. And, it required me to sit in the cold in an uncomfortable chair for 2 hours. Ironically the skating took place in Tacoma, which is where I had my PAO surgery just 5 and a half weeks ago. Those 5 and a half weeks feel like a lifetime!

I was a little nervous about this expedition, but I know that finding judges, especially dance judges, who aren't on vacation or at a competition and are willing to travel to Tacoma in mid-August is not an easy task. Of course I agreed to do it for the free food. (Just kidding, although the chocolate dipped strawberries were wonderful.)

Everything went just fine. I was a bit tired when I got home, and a tiny bit sore, but all in all I'm none the worse for wear. This was a good trial run since I have a lot of judging gigs coming up: a local test session August 30; refereeing a competition in Utah in mid-September (which will include my first plane ride post PAO); and judging Southwest Pacific Regionals, Pacific Coast Sectionals, and Junior Nationals (in October, November and December respectively, and all requiring plane travel).

I am now confident that my hip can handle all of this travel and judging, and I hope to do most of it without crutches or cane. Then at the end of the qualifying competition season it will be time for PAO number two (right now I am thinking early February, after Nationals). I hope to be recovered enough from that to judge Adult Nationals in April.

Tuesday, August 11, 2009

Five Weeks

Here's a quick update on my hip status at five weeks post right PAO:

~The scar itself looks amazing; it's just a pink line. There are itchy red dots around it though - probably some kind of rash, definitely not an infection. I'm putting on neosporin/cortisone and will call the doctor if it doesn't go away soon.
~I have very little pain and have not even taken Tylenol in weeks. I still don't have anything that feels like bone or internal joint pain. It just feels like soft tissues adapting, and I have tightness in the muscles and near the scar, especially first thing in the morning or if I move suddenly or if I'm on my feet (well, foot) for too long. I hear an occasional click when I externally rotate. No other hip noises though.
~I wore fitted jeans and low-heeled boots to go out with friends on Saturday night. My scar did not hurt from the waistband and I did not have an issue walking in "real" shoes. I am not going to wear high heels any time soon though.
~I made zucchini bread this evening all by myself, thanks to the bar stool in the kitchen and my handy backpack for carrying stuff.
~I went in to the office Monday for 4 hours. My butt hurt from sitting in a real chair for that length of time, and when I got home I was tired and took a nap. I am going back in tomorrow and Thursday and will try to work longer hours as tolerated.
~I am sleeping a bit better but still not back to normal. I can sleep on my back and on my left side. I rolled over onto my right side just to see what would happen and it didn't hurt. I am not really supposed to do this so I have not made a habit of it.

Range of Motion Illustrated:
Range of motion is much better than I thought it would be at five weeks, although I have no real basis of comparison. I can bring my right knee toward my chest (I can get it closer than shown in this photo, but not while taking a picture of myself!):

My external rotation has improved since my four week report; however, it's still not very good, as expected:

While lying on my stomach, I can grab my right foot with my hand and touch my butt with it. I can cross my right leg over my left. I haven't figured out a good way to stretch my hamstrings, which have been historically tight; I have a feeling they will be very tight when I'm able to really try.

I am very pleased with my progress, excited to get in the pool in a week, and anxious to start bearing weight and doing real exercises. I am curious how much my pain level will increase with additional activity and weight bearing since it feels like I'm doing a lot of nothing right now.

Sunday, August 9, 2009

Back to work

I'm almost 5 weeks post RPAO, and I'm going back into the office part-time tomorrow (I've been working from home part-time since week 2). I work for a financial services company doing product development, so I do a lot of sitting during the day either at my desk or in meetings. I am lucky that my job does not require much standing or walking since I'm still on crutches. Sitting may be difficult for long stretches but I am prepared to deal with that. I had originally planned for 8 weeks off work so I am happy to be ahead of schedule.

Next milestone will be going to the therapy pool starting next week. I've joined a pool near my house and I look forward to walking in the water and doing some easy range of motion exercises.

Long-term goal: If I continue to do well, and physical therapy goes well, I would like to try putting on my skates some time in October. Harlick is refurbishing my boots and should have them back to me next week. My goal is to do some light stroking and edges. It all depends on my strength and balance. This is a pretty aggressive goal for someone who is still on crutches, but it's something to shoot for.

Friday, August 7, 2009

Post #100

Last night I went out with friends and climbed 8 outdoor steps to get into the restaurant. When I got to the top, the people eating out on the patio clapped for me. Talk about earning your beer!

Wednesday, August 5, 2009

Driving under the radar

Well, I couldn't help myself. I was in my parents' suburban neighborhood. The streets are wide, people drive slowly, and there were no other cars on the road. The worst that could happen -- I could hit a mailbox, or maybe a trash can. So I drove around the block, and it was just fine.

I am not supposed to drive for two more weeks, but I had no problem moving my operated right leg from the gas to the brake and back again. I even drove several miles home from my parents' neighborhood in traffic, and all was well. I even had to slam on the brakes to avoid an idiot driver, and was able to do so.

I will be a good patient and promise not to drive long distances or on the freeway for two more weeks, because I could tell my thigh muscles were getting tired by the time I got home. But now I know it's safe for me to go to the grocery store, the post office, the coffee shop, or even the office, which I've promised my co-workers to do part-time starting next week (I was going to carpool with my Dad). Just knowing I can go places on my own feels so liberating!

Tuesday, August 4, 2009

Four Weeks

Clearly I haven't spent the past 4 weeks working on my tan

I am halfway to my post-op appointment where, please God, I will find out that I can ditch at least one of the crutches. I am 2/3 of the way to being able to drive and go in the pool. I have stopped the insane sweating. I am done with the hospital bed. I am so done with the iron supplements.

I am starting to feel pretty normal, other than being unable to get the song "Tennessee Waltz," complete with Lawrence Welk-type orchestration, out of my head. It's been two weeks since I took any pain meds so I don't think this is opiate-related, but I have no other explanation.

I also have this overwhelming urge to go shopping. I don't have the stamina to shop or try a bunch of things on, and I don't even know what size I will end up being when all is said and done; I'm not about to actually go to the mall. So what is driving this shopping desire? I think I've been watching too many episodes of "What Not to Wear," which is shown in reruns two or three times each weekday. I think Stacy and Clinton would agree that a brand new hip deserves a brand new wardrobe, so if anyone wants to nominate me to be on the show you have my blessing. Shut up!

Sleeping is still not a sure thing, and before this I was a really good sleeper, so I'm perplexed and not quite sure how to fix it. I've ruled out heavy drinking and sleeping pills, for now. I am still unable to find consistently comfortable sleeping positions throughout the night, and often wake up long before dawn. But that's OK! I can take naps any time I want to.

Not that I'm just sitting around doing nothing all day in my jammies, although occasionally that happens. I confess that I have read my share of People magazines, although I draw the line at The Enquirer and I've avoided the most ridiculous daytime TV shows. (Note: "What Not to Wear" should NOT be categorized as crappy daytime TV.) Most days I try to be as normal as possible by getting up, showering, making an attempt to tame my hair even though blow drying is out of the question, and putting on "real" clothes from the loungewear family (i.e., sweats).

I attempt to sit upright each day for as long as possible. I try to get up and walk around throughout the day and/or get out of the house if someone is willing to come get me. I'm not yet ready to walk in my own neighborhood since our streets are not well paved and the terrain is hilly. I am able to shower standing up on one foot. I can do light housework, such as cleaning up cat barf, doing laundry, and washing dishes. Monday I even vacuumed half of the main floor (it is possible, just takes a while) and cleaned the upstairs bathrooms. I actually sat on the floor and scrubbed from there - it's easier than mopping upright.

Which leads me to ... I can sit on the floor and get up from the floor using my good leg. It's a neat party trick.

I have not yet tripped, fallen, or accidentally put my full weight on my right leg as so many PAO patients do. In some ways I wish this would happen so I could test out my hip, but I know it's not ready. Don't worry mom, I'm not planning to actually do this.

My upper thigh is still numb, lumpy and a bit swollen. The scar looks really good and doesn't hurt when I touch it. I occasionally feel odd twinges of pain in my outer hip which I imagine are screw heads poking me, but since I'm not sure what screw heads feel like this could all be in my mind. I feel odd pulling sensations in my muscles. Sometimes my knees hurt, especially at night. I know how important strong quads are to keep the knee joint stable; my quads are not just weak, they are pathetic after four weeks of atrophy. My hope is the knees will be just fine once I build the muscles up again -- I've never had knee problems and don't want to start now.

I actually feel like I could walk just fine without my crutches, but I'm not going to be a fool and try it. There will be plenty of time for walking. I'm sure I'll look back fondly on these lazy, boring days when I'm in the midst of physical therapy hell in September.

Sunday, August 2, 2009

An excellent PAO article

This article was written by a medical student and PAO patient. This is a great PAO primer if you are preparing for surgery or as reference for your friends and family so they can understand what you are talking about.