Almost 11 months post op.

The snow today made me think about our trip to go snowmobiling the night after I got home from the hospital. Yes, I've skipped a lot here, I just didn't get around to it, and now here I am, looking forward to my 1 year post op followup and xrays.

I was instructed by Dr. P to stay on crutches, toe touch weight bearing, for 6 weeks. No movement restrictions, as long as I wasn't in pain. I didn't realize for quite a while that my hip flexor had been cut and reattached - it just didn't occur to me to ask about it, and I didn't know that it was something to even be concerned about. I'm lucky to have a job that I can do from home, so I was back working full time the Monday after I got out of the hospital. Full time included naps during the day, though. The hospital in Philadelphia set me up with visiting nurses, and they came twice a week. A physical therapist came once, and I wasn't sure if it counted against my 20 visit limit, so I told him not to come back. Dr. P said the PT before weight bearing really didn't accomplish much anyway. In retrospect, I should have called my insurance company to check, and I'm fairly sure now that it did not count against my limit.

It took me about a week, I think, to *ahem* get things moving again. The nurses kept asking me about it, and Hunter even brought me home a bottle of magnesium citrate, which is the stuff people take before a colonoscopy. The nurse told me not to take it, unless I want to sit in the bathroom all day and be miserable. Senekot ended up doing the trick. Thank God.

It seems I'm one of the few people who actually *lost* weight during my recovery. I lost about 12 pounds, and I'm not sure why. Maybe because my husband was in charge of food for so long. Maybe because the painkillers made me feel like garbage. Maybe because my liquid intake quadrupled during those weeks. Hunter made me drink lots and lots and lots. Which was a good thing. It was just hard in the morning... before he went to work, he would bring me a big mug of hot tea, and a big glass of milk. I would have to somehow drink the milk before it got warm, and the tea before it got cold. Also, he bought Ensure for me, and would count them every day to make sure I was drinking them. I ate one or two oranges a day, and he would leave a meal in a microwave container on the top shelf of the fridge, so I could reach it. I have a big Sigg aluminum water bottle, which he would fill every morning, then check when he got home to make sure I was drinking water. He took really good care of me.

First day home

It was so nice to be back home. Hunter just had to go snowmobiling the next day, and dragged me out with him. All I wanted was a shower, and I don't remember exactly why, but didn't get one that day... and I cried hysterically about it. Realized shortly afterward that it was the Oxycontin messing with my emotions. I didn't take another one of those, and never ever want to again! I made it down our stairs, out into the snow, up into the F250, and an hour drive north to the farm. Then up Haley's stairs, where I sat in the recliner the whole time I was there. They were very nice, but told me later that I looked like hell that night (pale, exhausted, etc). I'm sure I did!

In the hospital

The first thing I remember from being in my hospital room was repeatedly taking the oxygen out of my nose, and Hunter making me put it back.  It tickled, and I didn't like it.  Other than that, I was pretty comfortable... except for the numbness.  That drove me crazy.  For the first 24 hours or so, it seemed like someone was in my room every 15-30 minutes.  Maybe an exaggeration.  They would often have me move my toes, to make sure everything was good.  It was difficult, and I didn't think they moved enough, but they were pleased.  I eventually had them turn it way down, just to make sure feeling would come back.  For some reason it was on my chart that I had a morphine pump, but I didn't.  The nurse(s) asked me about it a few times, then dropped the subject.  I was just on the epidural for pain.  

The catheter didn't bother me a bit, I really didn't even notice it.  The first 'food' I got was broth, apple juice, and hot tea.  Not a great combination, but I wasn't allowed solids yet.  I refused to drink the broth, which made Hunter mad, but I didn't think it was all that appetizing at the moment.  

I slept on and off through the night, with visits at odd hours from nurses, residents, and finally Dr. P early in the morning.  I was running a temperature, my blood pressure was way low, and my hemoglobin was low.  I had received my own blood, plus what was recycled, during surgery already.  Dr. P was hopeful that my hemoglobin would rebound on its own.  

Wednesday= uneventful, and went quickly, with all the activity in and out of my room.  I stayed in bed the whole day, and continued to run a fever, although I really didn't notice much.  I wasn't too impressed with the food, but I did enjoy the hot tea with each meal.  The nurses were awesome, kept me with plenty of water, and soda if I wanted it.  Only problem - a nurse came in with apparent orders to remove the catheter.  Hunter and I both said no, since Dr. P had said I wasn't even supposed to get out of bed for another 24 hours.  Hunter began to get a little worried, and we watched more closely who was doing what.  

Sometime early Thursday morning (we're talking, 4 in the morning or something ridiculous), an ortho resident came in and turned my epidural off.  I have no idea why, I was too groggy to ask or stop him, and Hunter was sleeping.  It takes awhile to wear off, and I told the next nurse who came in, which was within the hour or so.  She said something about how they always do stuff like that, but aren't supposed to, and turned it back on.  Again, a little worried about what was going on, but no harm really done...

Thursday I finally got out of bed.  They took out the catheter and epidural that morning,  and I got up on a walker.  The PT lady was very nice, she adjusted my new crutches for me.  Unfortunately, either the catheter or antibiotics gave me a yeast infection, and I had no idea until I stood up.  I felt something running down my leg, and had to tell the PT lady, who got the nurse, who cleaned me up.  I felt awful about that, but I know they see much worse.  

Note:  I did have issues with the epidural again.  They took it out, and left.  I realized I was left with no pain management whatsoever, and managed to get 2 lortabs within about an hour.  Those had no effect, and the pain basically came in unabashed.  Dr. Parvizi came in about 45 minutes after I took the lortabs, and was a little surprised that's all I had... he said I needed oxycontin, and would have it ordered and sent to me.  Cue another 45 minutes waiting.  During this, a resident came in to take the dressing off my incision, and told me it was going to hurt.  I told him there was no way it could hurt more than I already did, and I smiled through it.  He said he'd made grown men cry before by taking the dressing off.  Finally I called Dr. P's nurse on my cell phone and explained the situation, and I had the pill within another 10 minutes or so.  After that things were taken care of more quickly... I don't know what went on with that whole ordeal.

Ayway...I sat in the chair for an hour or so, with no problems.  They came back later and actually took me to the PT room in a wheelchair.  Hunter tagged along, to watch and learn.  We tried steps.  They had a neat set of wooden stairs set up, probably about 10 or so steps, near the middle of the room.  First she showed me how to do it with two crutches, which left me with nothing solid to hold on to.  I didn't like that.  Next, sitting on the bottom step and climbing them on my butt, one at a time.  Nah.  Finally, one crutch and a railing, which was perfect.  I got back to the room, exhausted.  

Later Dr. P came to check on me again, told me in nicer terms that I looked like hell, and ordered a blood transfusion.  I was worried because I had read that it might hurt, but I didn't even notice it really.  I got my uncle's blood, and some random donor.  The cool part was, my aunt came to visit while I was getting my uncle's blood.  She stayed a while and talked to us, and was nice enough to take Hunter home with her so he could get a good night's sleep.  That night I slept more, the nurse visits weren't as many and obtrusive as they'd been.  (At some point that afternoon/evening I finally got a shower, which was the most awesome thing ever.  I really didn't care that the nurse had to help me strip, I'd lost all inhibitions by that point.) 

Hunter came back in the morning, Dr. P visited and said I looked much better, we went to PT again.  Totally mastered the stairs (Hunter said I flew up and down them, and the PT lady's jaw dropped), and learned all the OT stuff.  I got the sock putter-onner, shoe horn/sword, grabber, and leg lifter.  She showed me how to get in and out of bed, in and out of the shower.  After this session, PT released me, which meant I could leave if I wanted, or stay if I wanted.  I was not pressured either way.  Hunter and I discussed it, and didn't see any reason to stay another night.  We got my prescriptions, and he ran down to the pharmacy before they closed.  Right as he came back Dr. P popped in again, and was surprised to see me leaving.  He called me a 'very strong young woman' and seemed sort of impressed.  So, surgery on Tuesday afternoon, and I left at about 8:30 pm on Friday... not too bad!  

The drive wasn't bad, I had enough drugs to not notice it much.  I did have to get out and pee at one point at a rest stop, which gave Hunter a small heart attack, seeing me on crutches while that tired and loopy, but we managed.  =] 

1/27/09 - The big day!

The big day arrived.  We made it to the hospital by 7, and went in to register.  We were soon sent to another room to talk to a nurse and get checked in, check paperwork, etc.  We had the issue with the blood donations, but she got that straightened out, as described a couple posts ago.  

By 9 I was in pre-pre-op, laying back on a bed in a little area with a curtain, with Hunter sitting next to me.  We talked about anything and everything but the surgery, and he didn't want to be there at all, it freaked him out.   A nurse came by to see if I needed anything shaved, and someone gave me my hospital gown to change into, as well as those goofy little grippy socks.  

Around 11 or so I was taken back to preop.  A room lined with beds, just outside the operating rooms, with a central hub surrounded by doctors and nurses.  This is where I met the anaesthesiologists.  The one guy was a resident/student/something, I don't remember exactly what, but he was really cute!  He was the one who tried to put my IV in.  And I do mean 'tried.'  He started in the back of my hand, and claimed to have found a great vein.  It didn't work.  He apologized, then tried again a little farther up.  Again, it didn't work.  He apologized profusely, and my hand at this point was covered in bandages from the failed attempts.  On his third try, the head anaesthesiologist came to help, and the two of them together got it in.  I didn't mind, but at the same time hoped he wasn't doing the epidural!

After they got the IV going, the epidural was next.  I was wheeled to another area for this.  I had to sit on the edge of the bed and arch my back like a C.  I think there were 4 or 5 people watching/helping.  I was glad they did it while I was still awake and cohesive, so I knew for sure that it hit the correct leg.  

Back in pre-op, I had everything stuck in me that needed stuck in me, and was sitting and waiting again.  Dr. P rushed in, did some things at the desk in the middle of the room, talked to a few people.  I had only seen him once before, so I didn't expect him to recognize me, but he did.  He looked over and smiled, came over and looked over the chart, we talked a bit, and he autographed my leg with a marker.  He said he had seen the CT scan, and the correction would be difficult, but he felt like he could get a good outcome.

I was wheeled back into the surgery room at about 1 pm.  There seemed to be a billion people in there.  The anaesthesiologist told me they would give me something to help me relax.  I saw 3 guys hoist me legs straight up in the air to put in the catheter.  

The next thing I remember, I woke up while they were I guess putting me back together.  Twilight sleep apparently means that you can, and probably will, wake up at some point.  It was weird, nothing hurt, and I wasn't particularly bothered by being awake, but I did talk to the anaesthesiologists behind me and let them know I was awake and could feel things.  The one surgeon by Dr. P was pushing down on my hip forcefully with both hands, and I could feel pressure.  I could also feel a sort of grinding, like if you rubbed two pieces of granite together.  

I ended up being awake enough at the end of the operation that they actually asked me to help them get me onto the other bed to go to post-op.  Whatever, I didn't really care.  My surgery ended up taking less than 2 hours, and he was very pleased with the results.  It went better and more quickly than he'd originally expected.  Hunter told me later that Dr. P called him on his cell phone to let him know I was out, and things went well.

Post op was interesting... they kept checking whether I could feel/move my legs/feet, and the antibiotic they gave me through the IV made me itch like MAD.  I complained of the itching, and they gave me Benadryl through IV.  That's the best stuff ever, put me right to sleep.  This repeated several times, and I didn't get out of post op until around 10:30-11 at night.  This was partly due to not having a room ready yet, too.

While I was having fun itching and sleeping, Hunter was repeatedly getting booted from waiting rooms.  They closed at different times throughout the evening, so they'd bump him to the next one.  In one there was a woman screaming, so he just left and went to another.  Finally they let him in my room, before I got there, and he was napping.  

Getting ready

I did what I could to get ready for the big day. We considered buying a freezer, since we only have the small one on top of the fridge, but ultimately decided not to. I managed to freeze 2 chicken pot pies, 1 venison pot pie, and 2 lasagnas, all in aluminum foil pans so Hunter wouldn't have to clean them. They really came in handy.

We had just bought a new sleep number bed, so we moved the old bed out into the living room. I borrowed a TV tray from Hunter's sister, got the raised toilet seat and shower transfer bench in place, and got the house cleaned up pretty well. It's hard to know what you'll need until after you've had the surgery. Everyone kept telling me (mainly my mom, really) that I should get a walker, but I never did, and I don't think I ever felt the need for one.

Hunter still did not want to go, but he had already agreed to and I wouldn't let him back out. He thought he'd be in the way and bored, and should just be at work. He even offered to take me there, drive back home, then come and get me when I was ready. I thought about letting him just so he wouldn't whine and complain, but I didn't, and I ended up being really glad he was there. I packed enough stuff for him, a change of clothes for when I left the hospital, my basic toiletries, a can of spray shampoo (I did use this, it was nice to feel not-as-disgusting for a bit), my laptop so Hunter wouldn't be too bored, my brand new Millenial crutches, my blood donor card thingy so they'd know to get my blood... probably a few other things that I've forgotten by now.

We had to be there at 7 in the morning, so we left the house at 1 am. We could have stayed at a friend or relative's house in or near Philadelphia, but he likes to drive at night for some reason.... with the eating restrictions before surgery, I always think I will be really hungry, but I wasn't.

Pre-op appointments

Hunter drove me out to Philly for my pre-op appointments, about a week before my surgery date. We left super early in the morning to make it there for the first one. They were spread out with plenty of time between each, just in case. I started with the Jefferson one, where I answered questions, filled out paperwork, then saw a nurse, answered more questions, talked to the anaesthesiologist, and gave blood and urine.

That one took probably an hour and a half or so. Then off to the cardiologist, where I filled out more paperwork, answered more questions, and had an EKG. I was early getting there, but it didn't matter. The cardiologist informed me that she would be checking on me while I was in the hospital. I believe I did see her every day that I was there.

Finally I had to go to the hospital for a CT scan of my hip. I had taken an MRI cd with me to my appointment with Dr. P, but it didn't show him what he wanted to see, and wanted me to get another 3d image of my hip so he could see it before surgery. We were super early for that appointment, but I explained that we had just gone from one place to the next, and they said they could probably work me in. I waited maybe a half hour, the scan took about 5 minutes, and we were out of Philly by 1:30 in the afternoon. Not bad at all!

Giving blood - more difficult than it should be!

I was told I might need 2 pints of blood for my surgery. I originally thought, for whatever reason, that if I wanted to make an autologous donation, I had to actually be in Philadelphia. After a call to the Thomas Jefferson blood center, I learned that this was not true. I signed papers and coordinated a visit for my uncle to TJ, since he is the same blood type. Then I had papers sent over to the Red Cross here in Pittsburgh, so I could make a donation myself.

My papers were apparently sent to someone who either didn't know what to do with them, or just didn't want them. I was referred to another office, then another, then told to just call Central Blood Bank. Red Cross sent my papers to CBB, and they turned out to be much easier to deal with. Little did I know, big problems loomed ahead...

I made an appointment, and the scheduler and I talked back and forth a few times afterward, because TJ did not want to accept the blood from them. Finally they agreed to take it. I went for my appointment, and the actual donation took forever. The nurse kept adjusting things, and we decided that my low blood pressure was probably the culprit. After about 45 minutes, we finally coaxed a pint of blood out. Nice. I left, thinking I could cross this off my list of things to be concerned about.

The next day, the scheduler called me again, and TJ had amended their prior statement. They would take the blood, but they would not submit an insurance claim for it. The bill for testing and shipping (approx. $300) would come to me, I would have to pay it, then try to get my insurance to reimburse me. What a pain in the rear. Hunter and I decided it was worth dealing with to get my own blood, though, and it was already done, so there wasn't much I could do about it.

Fast forward to my surgery date (which I will describe in more detail later) - when I met with the nurse in admissions, I had my card from CBB with the tag number of my blood, so they would know to get it out for me. I gave her the card, she said it wasn't noted in my file that I had donated. She called the blood center at TJ, and they vehemently denied knowing anything about it. Thankfully she wasn't taking no for an answer, and argued with them until they checked again. They somehow had it dated for sometime in February, so it wasn't on the list for my actual surgery date. Geez. At least they had my uncle's blood ready.

10/08 - Appointment in Philadelphia

I managed to get an appointment with Dr. P in Philly in end of October. I'm in Pittsburgh, so it's either a drive across the state or a short flight. Thankfully a terrific old friend from high school/college lives in Philadelphia now, and even though I hadn't seen or spoken to him in 8 years, we picked up right where we left off years ago. Seriously, a true friend. I flew to Philadelphia on Tueday evening. Dr. P only sees patients on Wednesdays. My aunt and uncle picked me up from the airport, took me to eat at Geno's, dropped me off at Jamie's, and from there the adventure began.

Jamie got me to my appointment Wednesday morning at the Rothman Institute in downtown Philly. I filled out my paperwork and was taken back to the exam room in a reasonable amount of time. A doctor came in and checked my chart, asked me lots of questions, looked at my xrays, checked my range of motion, etc. Everything was set up for Dr. P to come in, then he left.

I waited a short time, then Dr. P showed up with several other doctors in tow. He briefly scanned my MRI, dismissed it as not showing him anything useful, then turned to my xrays. He verified yes, dysplasia, and yes, a PAO would be a good idea. He said he would do it, and expected a really good outcome, due to my age, size, bone density. He told me that on a scale of 1-10, dysplasia-wise, I'm at about a 5 or 6 (with 10 being the worst). Then we got into the serious surgery discussion. He listed all of the things that could go wrong, including damaging the sciatic nerve, and he hasn't done that yet on anyone, but it's bound to happen eventually, and he hoped I wouldn't be the first one he does that to. Next, he pulled out his Blackberry and looked through some dates, offering me something only a few weeks away. I felt I needed more time to prepare, and wanted to wait a bit longer before asking off work, so we ended up scheduling for January 27th of 2009. So, that was it. I went with a nurse and had xrays taken - standing up, and digital, which I'd never seen before, and was really cool.

Dr. P struck me as calm, straightforward, very nice, willing to answer any and all questions thoroughly and honestly. Another trait that occured to me, but I find difficult to put into words - it's like he's so professional and knows so much about what he is doing, he almost comes across as flippant. He literally glanced at my xrays for a moment, and read through the file, before telling me that he would perform this major operation, and have a good outcome. I'd almost rather have seen him pore over the information, make some sort of measurements, something more... In the end, I had the utmost faith in him, and rightly so.

Jamie took me on a day long sightseeing tour of Philadelphia before dropping me off at the airport that evening. I told him before I left that it was the most fun day I'd ever had. It's still true.

10/2/08 - This shouldn't be so difficult.

Still trying to get my xrays sent out. Dr. C is the newest doctor in the practice, and according to him, the only one who outsources patients, so the paperwork isn't always that efficient. It took about a month to get my information out, which was a little ridiculous. He asked me what the holdup was, and I basically had to tell him it was his office.

In the meantime, I'm still checking for information, reading all I can. There isn't as much out there about Dr. P as there is about Dr. M, so I'm considering going to see both. I might as well, right?

At this point, I'm confined to doing basically nothing. Treadmill, elliptical, stationary bike, all aggravate my hip quite a bit. It took me awhile to realize that was the problem, since it was a delayed reaction by about a week or so. I'm getting more and more frustrated by the paperwork, trying to schedule appointments, figure out time off, and how on earth I'll get to the appointments.

Scar massage

I'm breaking the timeline to add this while I'm thinking about it. I'm currently 8 weeks and 1 day out of surgery. I did not know about scar massage until last week. My scar is rather tender and tight, and I was not aware I should be doing anything to it. Google 'scar massage' or 'scar therapy' to find more information, and don't let your scar get all lumpy bumpy like I did.

9/10/08 - Dr. C - followup

Well, I had my appt today w/Dr. C... I think it went well. He started out telling me to go to Dr. P in Philly, and said "since it's so close..." I told him I didn't want to base my decision just on convenience, and he changed immediately, telling me to go check out Dr. Millis in Boston. Actually he said if I'm driving there, go to both and see what I think. He's sending a letter to Millis explaining what's going on. I didn't know, Dr. C has actually done the operation before with the guy who invented it (Ganz) while Ganz was here in the US, and he *could* do it, he just doesn't have the facility ("I'd need fellows and assistants and all kinds of extra people around.")

He was amused that I watched the surgery videos online. He said, "did they have green gloves on?" I said I didn't really notice (I went back and looked, they didn't seem to) and he said the video is Swiss if they're wearing green gloves. Yeah, basically I have to avoid impact type exercises... elliptical is low impact, but he said it'll still make me sore.

5/25/08 - First visit with Dr. C

Went in, had xrays done, etc. The helper guy, I think he said he was a DO, came in to get information, check pain, range of motion, write some things down. Then the doctor came in with the xrays. The first thing out of his mouth was, "You were a first born girl, right?" Well, yes. So, to make a long story short, I don't have enough bone covering the hip joint, so it relies on whatever soft tissue is above it for support, which will eventually wear down, leaving me with bad arthritis by my 40's. Arthroscopic surgery probably wouldn't help (his specialty) but we might do an MRI later to see if that might be an option. He said I need this other surgery, which is a major open surgery (periacetabular (Ganz) osteotomy), and nobody in the Pittsburgh area does it, I'd have to go to either Philly or Boston. They cut bone and shift it around, using your own bone and tissue instead of replacement.

Now I'm going to go to PT for the next 8 weeks, and go back to him again afterward. He was very nice, though. After he told me everything, he just stared at me for a minute and said, "you look sad." I said, "Well, yeah." He was very good about explaining everything, answering questions, and acting concerned, unlike the guys I saw in AL.

A couple minutes after he left the room, he came back with the DO, because apparently my condition was spectacular enough to warrant a mini training session. He twisted my legs back and forth, showing him my range of motion, quizzing him on different technical medical things (it was like they were speaking another language!). My favorite parts were "...if I moved your leg like this, you would tap out by now. But see, this doesn't hurt her!" and "..so from now on, when you think of hip dysplasia, think of her, and remember these xrays."

Also, the topic of childbirth came up, and he said that in the 80's and 90's, someone with my condition was told not to even think about getting pregnant. He said now it's really a non-issue, but it's going to be really painful because of the added weight. He said the only reason I'm not in more pain right now is because I'm thin (he must have said 20 times "well, you're thin" "since you're thin" throughout the visit). He did say I'll probably have to have a c section.

My Periacetabular Osteotomy

I originally didn't intend to journal this, but I've realized that I have forgotten bits and pieces along the way, so I'm going to recompile everything from various emails and communications, and attempt to date them appropriately. Partly for other potential PAO candidates' information, and partly for my own archive, since it is likely I will need to go through this again.

How did this all start? I first realized there was a problem in late 1999, when I began having persistent bilateral hip pain, and went to an orthopedic doctor in AL, back home. After xrays, exams, and being sent to a pediatric orthopedic specialist in Huntsville, the diagnosis was bilateral dysplasia, and I was advised not to engage in high impact activities, and take ibuprofen when needed. I was told my option is a hip replacement when the joint wore down and became unbearable. That is all I knew for a long time.

Fast forward to 2008. The pain had come and gone through the years, but was more persistent and increasing lately. Now in Pittsburgh, the sheer volume of doctors in the area was overwhelming, and I had no idea how or where to choose someone to go to. What was the point, anyway, I didn't want a hip replacement yet, right?

After years of persistent sinus infections (chronic sinusitis) (trust me, this is related), I happened upon a wonderfully terrific ENT specialist, and had a septoplasty and turbinate reduction. Endoscopic sinus surgery, where he cut a bone spur off the left side of my septum, and reduced the turbinates, giving my sinuses more room to drain. Holy miracle, batman, it made an incredible difference. I continue to see him for allergy issues, and have grown to trust him quite a bit... I mean, I did allow him to dig around and cut things in my head, right?

I noticed one day that there was a large orthopedic practice in the same building as the ENT office. I asked my ENT doc, Dr. S, if he knew any of those guys, and he had a pretty good opinion of them. I decided to give it a shot, and checked out the practice online. After looking at backgrounds, specialties, etc., I purposely chose the youngest doctor in the practice (Dr. C). This was based on the fact that the ortho guys I'd seen in AL were old and miserable, and my ENT is only a couple years older than me, and the most caring healthcare provider I've been to yet. I thought maybe he just hasn't been in it long enough to become old and jaded. Anyhow, back to Dr. C - sometimes things just work out. It turns out that Dr. C and Dr. S both went to school together at Notre Dame, and had nice things to say about each other. Apparently, in my unorthodox doctor choosing method, I picked a major hip arthroscopy specialist, as well as a extremely knowledgeable hip expert.

I know from reading on hipwomen that a lot of women are misdiagnosed or not given all the options that are available. I am so lucky that I happened upon a doctor who was able to give me an option that I didn't know was available... and more importantly, was able to give me hope.