What else happened on Game Day?

After I posted my Game Day post, I was called into one of the offices to have a final meeting with the nurse who was organising the last few details that needed to be covered before I went in for surgery.

This was mostly administrative.  All of my details were checked and I was given a red hospital band for each wrist that had all of my personal details on them.  It was red to indicate that I had allergies (alcowipes and fabric bandaids).  Apparently I had one for each wrist for easy access to my details while I am in the operating theatre.

I was then given a bag to put my clothes in and was told that I needed to have a shower with special soap and get into a hospital gown, booties and a cap and moved into a waiting room bed.  My husband was allowed in this room with me and we had a few minutes to chat before they wanted to wheel my bed to the theatre waiting room.

In the theatre waiting room, I was introduced to the anaesthesiologist and her assistant.  The next level of prep was to put me underneath a 'huggie blanket' that pumped hot air around me to raise my body temperature.  With the longer surgeries one of the things that they need to keep a close eye on is body temperature dropping.  Apparently by starting warmer, the risk drops.

As I lay waiting, slowly getting more toasty warm, people would come past and put different things on the end of my bed.  There were leg gutters and the foot pump machine and another blanket.   I didn't know what the gutters and the foot pumps were about until some time later.  It all seemed a little bit surreal.

The surgeon came in to have a quick chat too.  We talked about which side I wanted him to do first, the one that was causing me the most pain and went through the reason that we needed to make this decision before going in.  After the first one is completed, the surgeon and anaesthesiologist make the decision to continue making sure that I am doing well under the anaesthetic and any additional risks or concerns are assessed at this time before they cut the second side and get started.  He marked both legs with a marker pen indicating that I had chosen the right one to be done first and said he'd see me soon.

The anaesthesiologist came back and put a arterial line in and told me that we wouldn't be too much longer.  Not long seemed like a very long time for me.  I didn't have any of my personal belongings so I couldn't read, my husband hadn't been allowed in this area, so I had no one to talk to.  I was too wired to sleep so that was out.   I wasn't nervous, just ready to go in and get things going.   I resorted to eavesdropping on the nurses conversations to keep myself occupied.  Not the most ethical activity but my brain was buzzing and there wasn't much more in this sterile environment that I could do to pass the time.

After cooking for what seemed like forever, it was time to be taken into theatre. I was wheeled in and shifted over to the theatre table.  Everyone seemed happy and cheery and I took that as a good sign.  The operating table was covered with an air mattress type thing making it strangely squishy.  The thing that surprised me was how small the table seemed.  I still haven't figured out how the whole process went as far as how I was positioned for the surgeon to work on me and whether I actually lay on one operated side as the other was completed.  It's another of those questions that I really wanted to ask the surgeon but think it's probably a little silly to want to know these kind of things and keep my mouth shut.

I sat on the side of the operating table as the theatre assistant stood in front of me explaining that soon I would be given something that would make me feel a little drunk and not too worry, he would make sure that I didn't fall off the bed.  The fluid was injected via the drip on my left arm and I started to feel a bit more than a little drunk.  The feeling was quite pleasant and they spoke to me, keeping me in the loop about what was going on.  The spinal was next and I recall leaning forward with the theatre assistant making sure I didn't fall forward in my drunken state.  I don't remember it actually being put in.

The next thing I remember is waking up in ICU.

28 Days Post Op: Going Home Day

Today was the last day that I would be woken at 6:00am, 6:15am, 6:30am, 6:45am, 7:00am and 7:15am at which point I would usually be kicked out of bed.  Hospitals are like alarm clocks set by some evil person for an ungodly hour with a snooze button that keeps going until you are forced out of bed.  Going home day is exciting as well as a little bit daunting.  I was pretty confident that I was ready for it, though it is hard to know how I'll be able to handle everything until I got here and settled into a routine again.  I think it might take a few days to get to that point.

Prior to leaving the rehab doctor came passed to ask about the drama that we had last weekend.  Since I was actually at the point of getting out of there, I didn't see the harm in talking about the issues that we had.  I didn't really want to get into it while I was still there as I didn't want to have to deal with people that I have had issues with if they knew that I had made a complaint about them.  The doctor wants to address issues like these when they happen so that they can be fixed.  I understand what he was saying and had I been at a fully fit and independent state, I might have done so but having to still have to stay there and be reliant on these people, I really didn't want to rock the boat.  They were still able to identify the bad advice nurse since I knew what day I blogged about it.  I also told them about the 'good chance to be normal' comment and the other things that happened during the infamous physio session.  I'm not sure if there will be further training or what the repercussions will be but thankfully I won't suffer any consequences for it.  The doctor asked us to speak to the head of nursing about the issues as well, and she said that many people feel the same in relation to 'retribution' and fail to comment which doesn't help them improve the level of service provided.  Apparently it doesn't happen but I can't see how it wouldn't change the way that the spoken to person would react the next time that they had to deal with me.  Anyway it is all done now and I'm home!

On the way home we stopped past the mobility place and got the last couple of things that we needed for me at home.  I am now equipped with a granny wheely walker so that I can carry things around the house, specifically the kitchen and have a perch stool to sit in while I'm in the kitchen.    The main issue in the kitchen was that I am physically able to cook or make a cup of coffee or whatever it was, but I couldn't actually carry something out of the cupboard or the fridge as I am using both hands to use crutches.  The wheely walker means that I have a tray to put things on and both hands are still on the walker while I am walking.  Problem solved.

Stopping on the way home meant that I was in and out of the car twice which was an achievement.  Getting home seemed like an even bigger one.

27 Days Post Op: I am so outta here in the morning

Tomorrow is going home day and I have finished my in patient rehab program.  The goals have been met and I will be able to cope with being at home.  There is still work to be done to get where I want to be and that will be under the care of the fantastic people at Body Leadership Australia.  I don't mean to sound like an advertisement, I just miss them and this change over point really marks achievement (as in I've learnt the things I need to learn to cope on the outside) and a change in philosophy for my rehabilitation program to one that I am more comfortable with and positive about.

The things that I have learnt / reinforced from this hospital stay are:
Private cover is worth every penny:  I think that if I was in a shared room I would have gone absolutely crazy.  I also think that public might have discharged me sooner than now when I wouldn't have been completely prepared to go home.  (This is based on some of the horror stories that I heard over morning tea in the rehab gym - absolutely crazy - they weren't about Mater Public but even so)

Don't book in for major surgery a couple of weeks before Easter or other holiday period: Even if you think you are going to be out before the holiday period, don't risk it.  Not as many services are available during holidays even in hospitals.  I hadn't really thought that I would be in here this long though if I had of been asked before hand, I would have expected something like rehab in a rehab unit to be an essential service.  Apparently it is not.  Even in a Private Hospital.  Disappointing huh?

People who complain about TEDs have never had to wear Venosans:  TEDs are a walk in the park in comparison.  The policy of my rehab doctor is TEDs for night, Venosans for day.  I'm sure they are excellent at doing the job of keeping clots at bay and are no where near as much difficulty as a clot but it doesn't mean that I have to like them.  I certainly don't like them being put on me. (Hip restrictions means I can't do it for myself either so there have been times where I've been flicked or there has been a part that is overlapped and digging in during the process of struggling to get them up my leg.

If the nurses have reason to ask you if you want a movicol, it's probably a good idea to take it.  If you don't know what I am talking about, don't ask.  I just hope that one day if you are asked you remember this piece of advice.  Especially if you are being fed codeine.

If someone offers to bring you breakfast/lunch/dinner accept:  Don't be a martyr.  Too much hospital food has to kill you.  It can't possibly be good for you.  I have been told that this hospital has better food than the others in Brisbane.  While this may be true, four weeks of it is far too much of it.

Stand up for yourself:  You have to know what your medication is, what your treatment process is going to be and anything you are supposed to or not supposed to do and if anyone tells you otherwise, correct them.  It could be dangerous not to know.  People make mistakes.  Don't be the one to suffer from them.

Accept that you can't do it all and accept help graciously:  This is a hard lesson to learn for the independent and stubborn like me.  I'm in hospital for a reason and that reason is stopping me from being the independent person that I am.  I hate being reliant on others however that being said, I am grateful for those that helped me and didn't make me feel like I was a burden to them.  I am especially grateful to my husband who helped me at least maintain some dignity and the little sanity that I have left.  I could have done this without him and survived but I would have been somehow less me at the end of the process and very probably on anti-depressants and in worse physical shape.  I don't know how people do things like this without the kind of support that I have and I hope that I never have to find out.

I'm probably still a little close to the situation since I'm still here so I may not have figured out yet all of the things that I have learnt out of this experience.

26 Days Post Op: I'm Boring

I've got nothing.

Today was just a day.

I woke up, went to rehab, had lunch, went back to rehab, rested, had dinner and now I'm online for a while before I go to sleep.

I'm pretty worn out from a big day and I guess there will be a few more days like this until I am back on top of things.

One more full day to go tomorrow and then the next day I go home.

25 Days Post Op: The Home Visit

Today I got to go home for the first time in almost four weeks.  I went for about an hour with an occupational therapist to check things out in anticipation of me getting out of here on Friday.  My big achievements that were made today were getting in and out of a car twice, getting up my front stairs at home and getting up the inside stairs and out of the house twice.  (We really were only going to do it once as the point of the exercise wasn't to practice multiple times, just to check out how to handle things - but nothing ever goes smoothly and there were of course issues with the alarm that had to be sorted out before we could leave - typical)

We have sorted out the shower chair and I have figured out a place to put the crutches so I can get them to get out and we also sorted out the raised toilet seat as the toilet was too low and I would have violated hip restrictions without the higher seat above it.  These are the main two things that needed to be sorted out so that I can actually survive at home.  Good news was that our bed is also the right height and the only thing we really need to sort out is another comfortable chair to sit in when I am up.  We are going to look at one of those recliners that tips you out but I think we will need to go and actually look at some and see what is comfortable and high enough that doesn't dip back to much at the back of the seat.  We'll get home first and worry about that one early next week.

I am becoming more confident on crutches and though it is tiring to walk around, my stamina is increasing and I think that is making the other hurdles a little easier to overcome.  As my mobility is increasing, my hip flexors seem to be getting a little stronger as I am starting to see that there is a slight difference in the amount that I can lift my feet off the ground.  Today I spoke with the Physio that will be in charge of managing operation awesome (bugger normal!) also known as my home program and once targets are met the ongoing maintenance program.  It isn't going to be any problem at all to be re-assessed and an appropriate program written to strengthen up these stubborn little muscles that haven't yet joined the party.  I am looking forward to working with the Body Leadership Team again as I really have missed working with those guys!   Speaking of people I miss working with, I miss Pilates too - though that might be a little while before I am back to my usual schedule.  I can at least do bridges now (pelvic curls) and they are slowly getting better even if I am a little way of my pre-surgery capability.  It's unlikely that I will be using the bosu or a fit ball for a little while yet!  It's a step at a time at the moment and I know that once I'm home and under expert guidance that I will be making those steps at the right time and maximising the benefits that I will receive from the new joints in the long term.

Pain meds were reduced today and so far I am going ok.  The nights are the big test and those haven't been reduced yet so I am pretty confident that we are on the right path.  Today was a big day and so far there isn't much pain.  There is some muscle fatigue and aching though this is to be expected and isn't anything that is going to keep me awake.  I am hoping that what I feel now continues to be the worst of it as it certainly is manageable at this level and the level of activity I can do before it gets to this level is significant enough to see progress.

After the excitement of this morning I had a quiet gym session this afternoon with the regular drills.  We didn't do steps again today as there were probably as many today as the amount we did in practice yesterday.  I'm sure we will be back on them tomorrow and in the 'fine tuning' mode to work on not using the grounded leg to provide the extra clearance space required by pushing up on the toes slightly.  I'd guess and say I'm probably about an inch off that and I would expect to see that amount picked up in the next week.

All in all a good day with the slight exception of the possible cold germs that I may be carrying.  It might just be the really dry air-conditioning that is drying my throat out and causing me to start to lose my voice.  At least I hope that is all that it is and as soon as I am back in my regular environment everything will go back to normal.

It is time for sleep now.  It has been a really long day.  I hope I'm worn out enough to sleep in more than two hour blocks like last night.  Fingers crossed!

I just figured out that since I don't have to stay here all Friday and today is already gone, the countdown was actually wrong.  I only have two whole days left, Wednesday and Thursday!!

24 Days Post Op: 4 Days to go in Rehab

Today is the first day that I have been able to consistently get my feet in and out of bed.  Last night I didn't have to buzz for help to get out of bed which was completely awesome.   I also had too many chances to practice last night as I was pretty restless and was up four or five times.   Part of being able to do this is down to the fact that they forgot to lock me in for the night by putting the side rails up on my bed (they got two late transfers from another ward and were rushed of their feet - so I smiled and nodded and didn't remind them!).  Even though I had mastered the in and out of bed thing,  I would have still required assistance as you can't actually put the rails down when you are in the bed unless you are able to contort yourself over the side and lift a latch to do so which I really can't as to get to where it is placed would violate my hip precautions.  

This really was the last thing on my absolutely must do goals list before I can go home.  The extra couple of days is going to be good to solidify the progress and start to put a new plan in place as to what I want to achieve next.  I'll need to talk to my real Physio about that one and put a proper home plan in place so that I am maximising the results that I achieve.

I also had real food smuggled in for me today again.  It was awesome.  I miss real food and am counting down the hours until I can have it all of the time.  I'm not sure what my nutrition has been like while I've been here but do doubt that the meals are nutritionally balanced and designed for optimum health.  If they are, they certainly don't taste like it.  Having said that, dinner just arrived and actually looks ok.  The broccoli and carrots look real.  I might just eat those!  I still need a few more vitamins and minerals to help with the healing.

The rehab assistant turned up as we were finishing eating to take me for a walk which I politely declined opting to walk with my guests today.  It still surprises me that they have asked considering that I haven't received that level of attention on holidays before today with them expecting my husband to assist.  I wonder what has prompted the changes.  It is a little bit too late really given that I am going home in just a few days.

I had an interesting talk to a registrar today that will be presenting my case as a case study for his physician's exams.  It seems that emotional responses to chronic illness now feature as part of a patient assessment.  I'm not sure when this cropped up in the medical process but I am glad that it did and I hope that it filters throughout the medical profession as this seems to be where a big void was when I was diagnosed.  There seems to be more information sharing these days as well, making patients more informed about the medical process and what is going to happen.  It isn't completely there yet, google still helps (and probably hinders in a number of occasions) and the number of reputable medical resources online are growing.  Take Mr McMinn's site as an example of valuable medical information in relation to the procedure that I have had done.  My surgeon pointed me in this direction to find out more about the process and the prostheses which is something that couldn't and wouldn't have been done a decade ago.

Tomorrow is my home visit and I'm a little nervous about getting in and out of the car.  It's not something that I have done before and I'm not sure how I'll go.  It's something that I wish we could have tried before the actual day though there is no real way to do this without them actually organising a car and bringing it to the front of the building where the patient transfer vans pull up.   I have to decide tomorrow whether or not I should organise an ambulance to get me home or whether we should go in the car.  I'm leaning towards patient transport to get in the first time.  It also means that even though I can get up the front steps, I won't need to be able to get up them that day as I will be stretchered in and will actually be able to do some more work on building strength and mobility and be both physically and mentally prepared before we go out into the real world.  I'm a little bit worried about going out too early and not being strong enough to hold my own.  At the moment my pace is more than slow and the idea of being pushed around scares the living daylights out of me.  I'm sure like my progress so far, things will come together and I will know when it is going to be ok and until then, I'll at least be in the comfort of my own home.

I suppose it isn't surprising that I have new anxieties as the next change to my situation changes.  I have to keep reminding myself that it was a massive surgery and progress isn't going to be immediate. Apparently the mood swings are quite a normal part of the whole process.  For some reason it came up when I was talking to the rehab doctor today and he wasn't overly concerned and reminded me that I have had a major surgery and there will be emotional ups and downs as I get through the rehabilitation process.  I have been reasonably even the last 48 hours and I'm hoping to at least get through until I get home before something else sets me off.   The disparity between what the appropriate emotional response is to a catalyst to what actually happens is lessening but there is still a way to go yet.  I'm not sure I made the right decision in not following up my request to speak to a social worker or not.  I'm sure that I will work through these issues, just not sure if I should have sought more help to get there.  I guess I will see how I cope when I'm in my own environment again and just keep an eye on the mood swings and enlist the help of friends to give me the heads up if I start to head too far into a slump.  It's important that I keep a positive attitude to speed up the recovery process.

I'm still hoping that I will meet my end of June goals though right now I can't imagine walking without a mobility aid.  It's crazy that I can't because only a few days ago I couldn't imagine getting my feet into bed.  I really shouldn't have these hangups as my progress should be proving to me that I am on the right path.  I guess that's really why the physio upset me on Saturday.  Even though I really didn't have doubts that I would get there eventually, I still can't imagine progressing that far and I didn't like being told that I just had a 'good chance' as it's made me actively think about the little things that are niggling at the corners of my mind as the main part tries to stay positive and focused on what needs to be done.

23 Days Post Op: 5 Days to go in Rehab

I am pretty wrecked this afternoon.  I did a big session at the gym this morning back onto my terms and with my goals.  There seemed to be a little bit of back tracking which might be because I was more forceful about what needed to be achieved today or maybe she realised the normal comment was out of line.  I'm not sure but the positive side of things was that it went better and I achieved what I needed to achieve.  The next time I will be in the gym is Tuesday afternoon as the morning will be my home visit with my OT.  Tomorrow is yet another public holiday and I will be doing my exercises on the ward and going for walks. I have friends coming in with real food and they can take me for a walk (like a puppy *smirk*).   

The big 'I did it moment' today was getting my feet into bed twice today.  I'm not quite sure I could manage it now as everything is ready to fall asleep but I got them in - twice.  Out is pretty easy now provided the rails are down.  I'm not quite sure why they want the rails up still when I go to bed as I'm not rolling anywhere yet.  I guess it might just be one of those safety requirements that they need to follow for certain patients.  It just means that I still need to buzz the nurses when I wake up between 3 and 5am for a bathroom break so I can get out bed.   

I am allowed to get a pass out of here now to go across the street for lunch or a coffee or whatever provided that I go in the wheelchair.  My husband suggested we do this for lunch today but I wasn't keen  as I think it is already going to be hard enough to come back on Tuesday after actually going to the house.  It's probably a little backward, but I figure that if I just stick to my routine here, the days go quickly and the five days left will be over before I know it.  As it stands it's not quite even five really as I should be kicked out in the morning.  That will probably depend a lot on whether we still go for patient transport or not.  That is going to be decided on Tuesday as the getting in and out of the car thing hasn't been attempted yet.  I don't care if I have to go home in an ambulance so long as I get there and get there this Friday coming.   

22 Days Post Op: 6 Days to go in Rehab

Today was the day that I changed physios.  I'm not overly thrilled about this and I'm not completely convinced that it was my preconceptions that have caused the problem.  I wasn't looking forward to it as I work well with the guy that I was working with up until today.  Today marked a major change and apparently everything I was doing was wrong and apparently if we fix these bad habits now 'there is a good chance you can be normal'.  Bah.  Who says stuff like that?  There was never any doubt in my mind that I am going to be normal.  I despise that word and it doesn't accurately convey my meaning.  There was never any doubt in my head that the outcome would be positive.....  until now.  It annoys me (much stronger language), that yesterday was such a positive day and I was ready to smash it again today.

I understand the philosophy of getting things done the right way the first time, however, there are some times where you need to just figure out a way to do something to cope with life.  I've been doing this for twenty years.  It might not be normal but you know what, I had a good life.  Saying I might end up normal implies that I wasn't.  This might not be how it was meant though it really was a freaking stupid thing to say.  I'll do what I need to do to cope for now and then I will go back to working with my regular awesome physios who will correct me without being condescending, who will actually work with me to not only cope and get through life but achieve the positive outcomes that I am determined to achieve and who will listen to me when times get tough and inspire me to keep going.  I will believe them because I trust their sincerity and their professional skills.  There will be no fake platitudes as they will actually know what my progress has been like and be skilled enough to know what my limits are and help me push through them without making me feel like a failure. (eg setting realistic targets, one step at a time, letting me be involved in my own program and understanding how we need to get where we need to go).  Two of  my best friends, one being my husband, want me to request a change from the new physio and I'm not keen to do so while I'm here.  I know this might seem like I'm going back on my idea of being your own advocate but I don't want to rock the boat when I'm so close to being out of here and being in charge of my life again.  I will be mentally prepared for tomorrow and I won't let it upset me again.  I'm sure that the current physio knows her stuff and her methods work with some people but they don't work with me.  There are only four days of gym left before going home and I can grin and bear it.  I'll try my best and do what I have to do to be the model patient.   If I can wrangle it, one of them might be able to be a handover session.  I'm going to ask about that tomorrow and see what is possible.  I am not a failure and I won't give her the power to make me feel like one.

The big thing we need to cope with is stairs and my home visit on Tuesday.  Frankly it doesn't matter if the heel on the bottom leg lifts a little from the ground to get the top leg onto the stair at this point.  (My quads are strong, I have good balance and am stable so it isn't a falls risk)  I am working on hip flexor strength to lift the leg and it might not be where it needs to be by Tuesday, so what should we do?  Skip the home visit?  Delay going home?  I'd like to swear here but I have refrained from doing so thus far with this blog (at least I think I have), so I won't though I am sure you know full well what I'd like to say here.  28 Days in hospital is enough for me.  I'm out of here.  I'll get in the freaking house any freaking way I can and then once I'm in I'll work at it until I get to where I need to be.

I have so many bad habits from years of compensating for my diseased bone on bone hip joints.  I have already gotten rid of one and am working on the others that appear as I get fatigued.  Apparently it's better to do nothing than something if it is wrong.  I'm not a professional and not qualified to comment about anything but my own experience.  I disagree with that particular professional opinion that this is the case in all situations.  Obviously you don't want to do something the wrong way if it will cause injury or possibly cause stability to be affected thus increasing the risk of a fall but the fact of the matter is I am going to need to compensate to some degree until I heal fully and my strength returns.  For my mental health it is better for me to try something and at least achieve it even if I did 'cheat' this time and work on doing it properly especially if it means that I can actually get inside my house.  I also think it's better for me to be moving even if the range isn't up to what it should be.

Isn't it better for me to at least try to continue rather than give up?  If I had of done that I wouldn't have done any exercises as up until a few days ago I needed freaking assistance to actually get pretty much any of it done.  From the very beginning of my rehab I've asked to give things a go even though I knew I wouldn't be able to do it completely, I just wanted to see how far I could get and how close I was.  When I couldn't quite get there I was getting encouragement and we would work on it and you know what, the next day it was a little bit easier and I could do it a little bit better.  If you beat the will to try out of someone in rehab you aren't going to get good results.  Mentally the patient has to want it and want to be there otherwise what's the point?  

21 Days Post Op: 7 Days to go in Rehab

Wiped out from rehab today.
Had a good day, worked hard and progressed.
Will need to update tomorrow - need nap time.....

20 Days Post Op: 8 Days Left in Rehab

Today the target of going home next Friday has been finalised so the countdown is on.  Obviously this requires a couple of targets to be met.  The big one is the stairs.  Both my Physio and Occupational Therapist agree with me in thinking that this really is a reasonable target that I can meet.  

There have been a couple of positive changes today.  The main one that I noticed is that I didn't require assistance to complete some of the bed exercises which I have been getting a little bit of help with.  It wasn't easy and I wasn't working to my full range, though I was still actually getting somewhere with them which wasn't happening yesterday.  Mostly it was the right leg that I was needing light assistance with for the leg bends where you keep your heel on the bed and for the abduction for the left just to get started off.  I got through them today without assistance which was awesome.  Some of the reps didn't quite look as good as the assisted ones but the milestone is actually being able to do them.  I'm hoping this is an indicator that not only am I getting stronger but that my brain is connecting it all together properly so progression will continue along at a speedy rate.

I have started on little steps today, ones that are about half the size of normal steps so at least I am started on the path towards getting out of this place.  I had two sessions down in the gym today that involved a lot more practice on crutches.  I am getting a little more stable and can already see the difference from when I started yesterday.  I'm still a little way off using them unsupervised.  Unfortunately I change Physio's next week as the person that I have been working with for the last two weeks was actually a locum to replace the person who is actually assigned to me.  It is a bit of a shame as I have a good working relationship with my current Physio and I think that he knows what I am capable of and what to push me to do so that we are seeing results.  (It wasn't his fault that the gym was closed and he wasn't scheduled to work!)  I am sure that the other one is good - it just takes time to get into a routine and build a working relationship with a new person and I don't want that time to detract from the benefit from time that I spend with the Physio.

It looks like I will be going on a home visit with the OT next Tuesday where we will go through everything in the house and see what additional aids I might need to purchase or have installed to assist with me living back at home.  I think that we have an idea of most things that will be required, though there may be some little things that I hadn't considered.  We will need to test things out like getting in and out of the shower, moving around the kitchen and even getting in and out of bed.   It's amazing how many little things that you take for granted and it isn't until you do something like this that you realise the full magnitude of what you need to adjust in your life.  I had wrongly assumed that the limitations that I had before and the things that I had learnt to overcome difficulties would be all of the same things and I would be fine.  It turns out that even though I am reasonably well prepared, there is more than that and I am now aware of what I need and will continue to need for the next month or so as I continue to heal.

19 Days Post Op: On Crutches

Today all of the physios and occupational therapists were back at work so it was a busy day.

The day started of with the cancellation of my home visit with the occupational therapist, which wasn't completely surprising as I commented in a post a couple of days ago.  I haven't started with stairs and I need to get up seven before I can actually get into the house.  I thought she still might have gone to check things out but apparently that is only needed if major changes need to be made.  This started of the cascade of tears, even though I knew I couldn't go and for a little while longer while I explained why I am so upset about the whole thing.

I've always been a fan of keeping someone's expectations low and then over delivering so that they are thrilled by the improved time line.  It doesn't work like that in hospitals.  I will have missed two check out dates on Friday and this makes me feel like failure even though logically I know that the dates were unlikely to be met by any bilateral especially given the holiday period.  (The second one might have been possible if it weren't for all of the public holidays) I was also down because no one could tell me what my interim goals are.  I want to see progress and have something to measure by.

I need to know that something is happening and be involved with my own recovery plan.  This can be the little things that change in my rehab program like adding in side stepping or marching or getting dressed without my husband's assistance or whatever, just so I know what the progression by smaller more achievable goals that I can take pride in what I have accomplished and used it as a means to stay positive and focused on the development path.  I also need to know about what needs to be done at home before I get there.  I need to regain control of my situation and have things to take charge of rather than being so reliant on others to sort things out for me.  I don't like that and I don't think it is good for me.  It makes sense to me and I don't understand why there isn't more patient involvement in the recovery process.  I believe that ownership really is a big part of maximising the returns of the process.  I mean where would I be now without the 'prehab' or without the second gym session each day, both things that I have done or pushed for myself that haven't been requested of me?  Scary to think that I might not even be where I am now.  How many more weeks in here would I be looking at?

In my gym sessions today we started on crutches.  They aren't the easiest things to master, mostly because I am completely uncoordinated.  This has absolutely nothing to do with the surgery.  It usually takes time for my brain to figure out things like this the first time.  I was a little wobbly and I think that I am going to need a fair bit of practice to be confident that I am not going to fall on my face but I am a little more positive about the whole thing than I was yesterday.  I think that because things were starting to drag out so much longer than I thought they would I was starting to get a little afraid of how difficult things would be and maybe that I wasn't strong enough and I would end up injured.  I think this links back to my earlier comments about involvement.  If I know the path, I can deal with it.  When I don't know what the hell is going on and what I'm going to do I end up dwelling on what I can't do and making it a much bigger issue that it probably is.  I'm not sure if I am just a control freak with issues, or whether this is normal in the situation that I'm in now.

I needed a nap after this mornings session and woke up reasonably refreshed.  This makes me happy for the sole reason that I have worked to capacity and had accomplished a lot more today.  I went back down in the afternoon and had another go at it all and am tired again now so hopefully I should sleep well.

The OT came back again this afternoon and went through what she thinks the plan should be to work towards going home.  She's pretty much in tune with what I think it realistic, as in the end of next week, and has started to plan to work with me to achieve that goal.  We will be covering more functional things like actually getting by day today at home without having so much assistance with things like meals and being in an environment that isn't completely accessible.  

I feel like we might actually be getting somewhere now.

18 Days Post Op: Bad Advice

I've had a rant in the past about being your own advocate.  I was on that warpath again this morning after a 2:00am argument with a nurse, who told me to do something that clearly violates the 'Bilateral Hip Precautions' sign that sits on top of my bed.  I could have done what she instructed me to do which some people would I guess but I didn't.  It was bad advice and I wasn't going to take any risks with my new hips.

Basically she wasn't fit enough to assist me to get my feet in and out of bed and was trying to get me to put the stronger right foot under the left to move it off the bed. (I really don't require a great deal of assistance, it's down to gentle guiding as I am holding most of my weight now - at best guess from my best helper, when I'm tired it would be lucky to be a kilo and a half of weight).  What she wanted me to do was in clear violation of the hip precautions as I am not to cross either foot past the mid-line.  I have been given at least a dozen worksheets with pictures with large crosses through them that have people with crossed legs just in case I don't quite understand the concept.  This shouldn't be anything new to this woman as this ward is for rehab and there are always hips being done here.  Maybe there is only one bilateral a year, but even so, it's pretty clear as to what I shouldn't be doing. I said I wasn't allowed to do that and was given a bit of a sigh and at three am, I was silently screaming profanities in my head.  If it hadn't of been the middle of the night and had my brain been in gear I might have been a little more eloquent about the issue than 'I'm not allowed' to at least explain, but in the middle of the night when you've just woken up and you need to pee, reason and alertness usually isn't present.

There is a reason for the precautions - it's to reduce the risk of dislocation.  It's not just because I don't want to do it.  I just don't want to end up back in surgery and starting this whole process again.  I don't think my mental health could handle that.

Getting back into bed I had a minor panic and a 'you've pushed them too close together (my feet)' before we'd even got halfway there.  I received a rather stern lecture about how I should do it so that she didn't have to so so much to assist with my feet in future.  The way I have been doing it is fine with other nurses, wards-men and exactly as I was instructed by the physios but apparently that was too freaking difficult for her and I got told how her way was better because I'm too hard on the nurses. (almost a direct quote - it's better for nurses health if I can do it properly - though I have to wonder why the wardies prefer the physios way if it was physically harder - so I'm not sure what the go is other than she was a cranky ass who was physically unfit for the physical requirements of assisting patients)   Not good for my mental health at the moment to be spoken to like that.  I know that I am unreasonably fragile, but come on, she was unreasonably stupid and mean.  I think that I would have been in better condition than her pre-op which really does make me question how she manages to do the job when there are people in this ward that require more assistance than I do.  I guess she doesn't normally get the hard cases and probably wouldn't have answered the buzzer for me last night if my regular nurse hadn't been on her break.  I didn't realise this though and when I awoke again at 5:45am and needed to get up to go again, I tried to fall back asleep until shift change so I could get someone else to help me out.  When you start to think about needing to go though, it really makes it difficult to get back to sleep.  I lasted about ten minutes, by which stage I thought my bladder might explode and I couldn't possibly wait another half hour, I buzzed again.  It wasn't even as though I could even attempt to do it myself as the rails on the side of the bed were up and you can't put those down when you are actually in the bed.   The nice nurse arrived and I nearly cried in relief.  She assisted me out and commented on how much better I was getting and that I was almost doing it all on my own now.  After getting back in bed, I passed out with relief, feeling a bit better about myself and my  progress again.  I had prided myself on becoming low maintenance to the nurses, it was something that showed how much I had progressed.  I don't need that much assistance anymore, just in and out of bed, teds and meds and these things don't really take too long in comparison to higher dependency patients.   Somedays it seems that the better you get at looking after yourself the more you get shafted (it's not just the gym, its now the grumbles at requiring one assist - even though my chart still says two assist).


The whole situation highlights once again how you need to understand what is happening to you and what treatment you require to ensure that the right processes are followed.  Speak up if you think that something is wrong.  People do make mistakes, it isn't always ignorance, stupidity or laziness where errors occur.  If you know what should be going on around you there is an extra person there to pick up an error before it can occur.  Disaster can easily be averted if you know yourself and your treatment and stick up for yourself.

I should note that on the whole, the nursing staff are excellent.  There have been a couple of moments like this with one or two that really change the whole experience.  It's a shame that poor organisation and a few people really unsuited to the job taint a group of truly extraordinary people.

17 Days Post Op: Where's my Rehab?

The gym was open today with one physio, though apparently I don't get to be on the list because I have advanced enough that I can do my exercises on the ward.  I am quite disappointed that I miss out on the opportunity to advance because I have been working hard and have been motivated to do so without supervision.  I still require assistance to do some of the exercises and this is left to my husband.    There is also the matter of correcting and advancing.  This isn't something that I can do with the help of my husband.  We need the professionals to help out.  This is why I am here right?  If I am not getting the help I need, how am I going to get out of here?

I have to wonder what would happen if it wasn't possible for my husband to be here so much to help out.  Would I receive a higher standard of care or would I still be left to my own devices to figure it out?  I don't know which it would be but either way I'm not very impressed.  I understand that staffing and services are reduced on public holidays but I think it is a little odd that a rehab ward can't provide rehab for all of its patients for a four day period.  My doctor seemed surprised that I wasn't scheduled for the gym today, though I'm not sure this will go anywhere.  I'm not sure what good it will do to talk to him further tomorrow about it as there won't be any physios on at all then until Wednesday.  The regular physio that I have been working with that is on leave had expected me to be assessed in his absence and the exercises added to.  This wasn't the only indicator today that the wheels have fallen off over the holiday period and nobody really knows what to do about it.  The best I can do in the meantime is continue to do the set exercises and hope that I've at least built up a little more endurance that will be noticeable when I get back into the gym on Wednesday.

Wednesday will probably not be a great day for me emotionally.  I will try to stay positive and not let it get to me.  If I am aware that I might be a little out of sorts and why, I think I will be in a better place to deal with it and get on with what I need to do here.  The reason will be that I was supposed to be up to going with the Occupational Therapist on a home visit in preparation for going home on Friday.  The home visit will still happen, I just won't be able to go.  It's also highly unlikely that I'll be going home either.  Then we roll into yet another long weekend, meaning the gym is unlikely to be open next Monday pushing back any hope of going home to much later in the week.

Logically I understand that this is where I need to be right now as I really couldn't cope at home just yet.  The absolute minimum that I need to achieve is to be able to step over the step into the shower and be able to get my feet in and out of bed.  These are the two things that I really can't go without.  With patient transport, the front stairs wouldn't be an issue though realistically I need to be able to get in and out of the house.  I just need to keep working and eventually I will be home and this will soon be a distant memory.

16 Days Post Op: Happy Easter

Today I had REAL food for the first time in over two weeks.  My lovely husband made real Spaghetti Bolognese and brought it in for lunch today which was so much better than anything I have eaten in over two weeks.  This comparison isn't really fair as his spaghetti is awesome compared with other real food and not having the unfair comparison made to something that really isn't food.  I was also brought in home made apricot slice (again awesome) from a friend and left overs from my brother's bbq last night from my mum.  The fridge is full and I might be free not to suffer from hospital food for at least tomorrow.

I don't think that hospitals are good places to get well.  The environment needs to be more like a resort or spa retreat where food is highly nutritious and tasty and the appropriate combination of activity and restful sleep can be maintained.  I know this might cause further overcrowding when people don't want to go home though I really do think that you might be able to kick some people out a bit sooner as they improve a lot more quickly.  Positive people heal quicker than depressed people, right?  Well, the food would be enough to depress anyone after more than a couple of days.  Pair that with the interrupted sleep and dry air conditioning and surely that isn't a really good recipe for recovery?

To overcome the disadvantages of being here, I need to find things that I can do that will keep my mood  happy and positive about my progress.  First off, I'm going to be starting with real food with real vitamins and minerals and we are going to go outside in the sun and get me some vitamin D.

15 Days Post Op: Mini Meltdown

Since I wrote yesterday, I've been a bit down.  It's not as bad as it was on a few of the days in the 'missing week' though that period of time was intensified due to low haemoglobin and adverse drug reactions and that isn't a reason to disregard it anymore.  I have to take ownership of how I feel this time and nothing is going to be a quick fix.  I guess I just have to think about what it is that is actually the issue and work out what I can do to either fix it or get over it.  I am probably being a little hard on myself but that wouldn't be completely out of character.  I had high expectations pre-op which were probably a little stupid.  I don't necessarily think that I was naive enough to think it would be easy.  I just thought it would be easier than what it actually is.

I've had a bit of a think about why last night and today have been more difficult emotionally than normal and I have a couple of ideas.  I'd say a big part of the reason is that the rehab gym is pretty much closed for the duration of the public holidays with only one session on this morning.  I seem to find it more difficult to keep it together without the external validation from the Physios who are adding things to my program as I am progressing.   (Just telling my I'm doing great doesn't work - it sounds just like something that is said to make me feel better with no underlying truth - I need to see the progress and have someone else see enough of it to professionally say that I am ready to move forward.)  Another part is frustration setting in as I struggle to do the most simple of tasks like get my own feet out of bed without assistance (which I haven't managed to do yet).  Being in hospital is isolating as well.  Normally I have a choice as to whether I want to be social or hibernate and this isn't really a choice that I have right now and I don't have the interaction that I normally do with people I know and I'm struggling a little with this too.  It could also have a little to do with the change in general routine from being a night person to being woken at six in the morning every day.  Or maybe even partly the food which I am pretty much sick of especially after so many weeks pre-op eating a healthy diet full of fresh food.  Or even a little bit of worry about how much longer it is going to be before I can work again and have the income coming in, or how long it will be before I no longer rely so much on my husband to help me so that he can go back to work.

Yesterday I was on my own at the bar outside my hospital room running through the exercises myself while my husband watched on to make sure that I didn't fall over or do anything stupid like that.  I'll need to do this again this afternoon as well since the gym was only open this morning.  I'm not sure there is enough in my ward program to progress while the physios are away.  I'll have to increase the duration and repetitions and hope that this helps.

I didn't really feel any progress today and have started to wonder just how long I might be stuck in this place before any sense of normality returns to my world and I can at least be at home.  I hadn't planned on being here this long and had expected to be at home today based on the information that I was given pre-operatively.  The estimate of seven to ten days that is typical for one hip has been blown out of the water.  I had in my head that it would likely be two weeks though I hadn't considered that I might be looking at three or more.  Even when I wrote an email to one of the businesses that I do some contracting work for telling them that I would need the backup to stay in place for another couple of weeks, I still didn't really consider that I might actually be in here for a month.

Last night it sank in.  If I'm not starting on crutches yet and can't lift my feet more than an inch or so from the ground I'm not likely to make the end of next week.  I'll keep working on it and maybe we will see some leaps and bounds that aren't expected, though I don't want to get my heart set on it especially when

I feel a bit low still today about the whole thing.  I miss my life, even as it was with the daily arthritis pain. I know that I couldn't have gone on indefinitely like that and logically I know that this really is the only decision that could be made and now really was the only time to do it, but that doesn't help at the moment.  It's probably just a bit all too much at the moment and hopefully it is a phase that I can kick myself out of and get on with it.  I do know that at some point in the near future I will be able to look back and the gains that I have had will have made this all worthwhile.  I just want to be closer to that day and further away from this one.  In the meantime, I guess I just have to keep faking it until I make it.

Today was better than yesterday.
Tomorrow will be better than today.
I will be home soon.
This process will be a distant memory soon.
Life will be better once I get stronger.

14 Days Post Op: Good Friday

Public Holidays mean that the rehab gym is closed.  I still have exercises to do, though it is a little more difficult without some of the equipment.  I have four days of this to work through and hope that the schedule that I am on sees at least some improvements.  Up until now I have seen a change every day and I hope to continue to see these things happen.  I'm a little worried that it won't run as smoothly and as quickly while the physios are away.

The big improvement today was being able to shower and dress independently.  Thankfully I have had my husband to assist me with this, so it hasn't been as much of a big deal as it could have been. (I'm not particularly happy with the idea of someone other than my husband help me with this.   Hopefully by being able to do this myself now, I can be a little more independent and put less pressure on him to be here first thing in the morning to assist with the getting ready process.

Between being out of bed at 7:30am and getting ready and sitting out of bed until my husband arrived around eleven, I was pretty much wiped out for a while.  It sounds strange but sitting out of bed requires significantly more energy than sitting up in bed.  I'm not quite sure why.  I had a bit of a sit back in bed and took advantage of my husband being available to give my feet and calves a bit of a massage with some moisturising cream.  It is ridiculously dry inside here and my skin is peeling.  It's truly disgusting.  It might also be some of the cleansers and tapes that have been used over the past couple of weeks that have assisted in this process as I do have quite sensitive skin.  I probably should have started this moisturising process a lot earlier to prevent this, however, it wasn't something that I'd really thought about happening.  I don't think that the compression socks are helping much with the skin they cover either.

After lunch, I actually went outside for the first time in a week.  It was a bit strange to be out in the open.  We didn't go too far, just out of the front door of the building.  I went in a wheelchair as I'm not quite up to that walk yet especially since there isn't any seats downstairs that are the right height for me to sit on while I've still got hip precautions.  I'm not sure how people do this when they are out of hospital but haven't yet had the precautions lifted.  I don't know too many places that actually accommodate for the higher chairs and toilet seats that are required.  I guess by the time I get home, I'll still want to be in going through my own physio program, working on the strength and ability to hopefully ditch the crutches at six weeks so there won't be a great deal of time to be looking at spending too much time out and about.

After getting back to my room from downstairs, I got stuck into the first set of exercises for the day.  This pretty much tired me out again and put me back into bed for a bit of a rest a chance to catchup with a friend that came to visit and to post for today.  I am still planning to do another set today to hopefully replicate the level of activity that I have been doing in the gym for the past few days.  This might wait until I've had a short siesta though :)

13 Days Post Op: Surgical Dressings Removed

This morning the rehab doctor decided it was time to remove my surgical dressings as I am healing well. I have some photographs though I'm not yet sure that I particularly want to show that much of my upper thigh and bottom to the world :). I'll think on that and decide another time. The wounds are a little longer than I estimated, mostly because I really couldn't see them. They would be approximately 12 inches long. They don't hurt, I just feel some pulling when I move which is pretty normal. There are little pieces of tape across the wound that sit side by side down the length that will apparently just fall off when they are ready. The tape might even be part of what the pulling sensation is.

We also discussed going home. The target for now is next Friday. I still have a lot of work to do and the doctor seems confident that it is a reasonable goal. There will be an assessment of this on Wednesday after all of the public holidays to see that we are on target. The rehab gym is closed a lot in that time, so I am hoping that there will be enough Physios for me to get the assistance that I need to meet the progression targets in the next five days. Each day my routine increases, I just hope it's enough!

12 Days Post Op: Progressing Well

I am progressing reasonably rapidly at the moment.   I still require some assistance to survive the day, though the amount of effort required from the 'assistant' is reducing as I am starting to be able to use more of my own strength.  I am still a little way off being a superstar of the rehab process but I think I at least deserve a gold star for effort!

The main area where help is required is to get in and out of bed.  My legs are still too heavy to move around from a laying ore reclined position in bed around to the side of the bed without a little help.  It still astounds me as to how much weakness that there actually is.  I understand the concept that I was cut open, bone sawed off, extra pieces put in and all sewn back together again, however, I just can't seem to grasp how this makes all the muscles go to sleep.  I understand that muscles will waste if they aren't used but still it hasn't been that long since they were used properly.  I guess that I have underestimated the amount of activity that I actually did do in a regular day even if there were a few lazy ones back to back sometimes.

It really is a vicious circle that needs to be broken out of as quickly as possible as when you are weak, activity is difficult, slow and you do less of it.  The less you do, the less you can do.  As an example, Pre-surgery simple activities like going to the bathroom aren't a planned and executed event, you just go and think nothing of it.  Post-surgery they are. In addition, middle of the night trips become a major exercise so returning to sleep isn't particularly easy.

I don't think that I started down that path of doing less and less, which is extremely positive.  I was lucky that even though I was ill for the first week post-op, I had the encouragement and assistance that I required to get started on the path to recovery.  (Even when I was high on oxycontin the first time I had it ever and was freaking out and throwing up, I still tried something.)  Each day I get stronger and have both more ability and more endurance to complete the exercises and add new ones in.  I'm hoping that this continues for a while yet as I still have a number of old skills to remaster.

The big one is walking.  I am currently using a rollator/gutter frame that looks like this to walk.  I am using significantly less pressure through my arms and walking is slowly becoming more fluid.  It is more difficult to walk in the rehab gym on the bars, though this too is getting easier as time passes.  The bars are a prelude to crutches which I will need to be an expert on before I am allowed to go home.  My left side is still recovering from a bruised nerve and is weaker than my right side.  There may have also been a pre-existing weakness in this side that I wasn't aware of as it was the side that had the most joint damage.  Thankfully I was still able to have the BMHR on the left and it didn't have to be changed to a total hip.  Surgeon's skill or luck or likely a lot of the former and a little of the latter, I don't know, I am just grateful as it will make revision a little easier.  As I walk without pressure through the arms, I fall into the left side as the hip stabilisers aren't there yet.  I have added in other exercises to start to encourage these guys to fire and work a bit harder.  The residual numbness in the left side is almost gone, so hopefully we will soon see strength returning a little quicker than it has on this side so far.

Sleep is still difficult and is likely to continue to be for a little while yet.  I have started to get into a little bit of a routine in which I am able to get about 3 hours before waking to get up and move around for a bit and then back to sleep again a half hour later for another 3 hour stretch if I am lucky.  There is always further little sleep time depending on waking times, though this can be as little as an hour.  I manage a nap in the afternoons before the afternoon rehab session or in the early evening before my 10pm meds.

I am spending a higher than normal amount in bed and suffering muscle tightness in my mid and lower back.  The periodic muscle pain is pretty much all there is as the actual hips themselves are pretty much pain free.  There is still a lot of swelling left and ice is one of my best friends.  As I understand it, this is pretty normal and will continue to be this way right throughout the rehabilitation process.

11 Days Post Op

I'm starting to get settled into a rehab routine. I'm down there in the mornings for a hour or so and then have a slightly shorter afternoon session after heading back to my room for lunch and a rest. I've added exercises in each day so there is obvious improvement which is a positive sign that things are on track. I am pretty worn out after today's efforts!

I started the day a little fatigued as it is difficult to sleep without rolling to one side and there was soreness in my legs from yesterday's efforts. I discussed pain management with the ward doctor and rehab doctor today and have decided to hold out a bit longer as is as I'm not really keen to take the jump to a morphine based drug after my run ins with his friends oxycontin and endone. Not being a doctor, what I don't understand is how ibruprofen is considered a 'strong' anti-inflammatory. I would have thought that even the Voltaren that I was on was more powerful than that. Maybe it isn't and it's just different -I don't know. It's hard to tell right now if the other joints are acting up due to rehab and healing for the hips or whether they are doing this on their own. It's most likely the former. Either way it's a pain (pun intended) and one that hopefully won't impede my progress. If it comes to that, I'll reconsider the drugs as I want to be recovering as quickly as it is possible for me.

After rehab, meals, showering and other daily essentials (naps in this category), there isn't a great deal of time for much else so the days go reasonably quickly. One day blends into the next with energy levels depleted and little desire to do much else than rest and prepare for the coming day with anticipation of what new things that I might be able to do as the new day dawns.

Waiting for PT

10 Days Post Op

My new regular activity is waiting for the Physio. In the mornings we go for an hour and the schedule isn't completely fixed, you just have to wait your turn. Patience isn't exactly my strong suit. To pass some time I thought I'd play around with a blogger app so you'll need to forgive iPhone typos and odd corrections.

I woke up early this morning with the fire alarm going off followed by a "don't panic we are sorting it out". There wasn't major panic but I did wonder how they would get us all of here if they had to given that you don't stay at the rehab ward for no reason. The pre-six alarm means that there are two nurses to deal with 14 patients on this floor so it could be interesting. I'm sure that there would be documented emergency procedures and people would come from other parts of the hospital. Curious though. Firetruck was here in what seemed like under a minute so I guess that factors into their emergency planning. It was nothing and we were advised of that much about five minutes later. It was probably just some idiot smoking in the toilets or something.

Apparently someone is coming to get me so will continue a bit later on today.