Monday, 28 April 2008

Daily Living - Progress Report (3)

Its 4 weeks since my discharge from hospital and about 5 1/2 weeks since the operation.

I am able to manouvre with a greater degree of flexibility as each week passes. My right leg still twists around 45 degrees from straight ahead when left to dangle. I experience much less popping of ligaments and only have a muscle spasm about twice a week and then only when I move too quickly. I am able to use the crutches to reach areas inaccessible to my powerchair and hardly ever use the zimmer frame now. I am able to stand up directly from the chair on one leg with relative ease and this is now my preferred method of relieving myself when the need arises - no more use of an improvised urine bottle. I still wash over the sink while seated in the chair but have managed one steam shower.

I think all sutures have now either dissolved or been removed (it took 3 attempts on different days - probably due to the tight stitches being covered by swollen tissue which gradually resolved and caused their reappearance.) En-route one stubborn clear suture seems to have caused superficial infection which was worrying given the possibility of a return of the sepsis that has troubled me for the last 4 1/4 years. That all now seems under control and the District Nurses finally "discharged" me from their care on Friday evening.

Having crossed the final threshold on Saturday, and managed to scooter my way around our front and back gardens, I returned to the attempt to "climb" the stairs leading up to our converted loft area yesterday evening.

A little like NASA's careful attempts to land a man on the moon my approach was to test each step on the way before committing to the final attempt. So with my wife ready at the top of the stairs I made my way up by sitting down and levering my way up one step at a time. As I approached the top we faced the problem of how I would stand up without taking any weight through my filleted right leg.

In the event the adjustable height shower stool bought 4 years earlier came to the rescue.

I could not manage to lever my way up to the seat at its usual (highest) setting but by reducing it to its lowest height I could just manage to haul my way up backwards to sit on it. Then by twisting slightly I was able to move through 90 degrees and stand up. At this stage that was all I wanted to prove so after a brief rest we attempted the "re-entry".

I was able to stand at the top of the stairs and experimented with which step I should aim my right foot at ready for my left to join it after a brief transfer of weight. I was able to stand with my weight on the banister to my left which was horizontal and some of my weight on the right hand (sloping banister). I needed to feel confident that my right hand on the 30 degree sloping banister would not give way and once I did I was able to support my weight and hop through with my left leg onto the 3rd step down. I could then resume a seated position and begin bumping my way back down to the ground floor.

I am still not able to do these things unaided but it is quite an achievement nonetheless to have resumed a greater degree of normality.

The next goal will be to sit in my car as a passenger and escape briefly into the nearby Peak District. If I can manage this then I might be in a position to cancel the ambulance that is booked to take me to the follow up out patient clinic in just over 2 weeks time.

Saturday, 26 April 2008

The Final Frontier - Smashed! :-)

Its my birthday and because of the recent turn of events it seems like all of them and all my Christmases have come together.

I've already mentioned how being able to bend my knees up made movement easier and particularly the transition into and out of bed. In the last few days I've been confident enough to stand up from the powerchair without needing to use the zimmer frame. I demonstrated this yesterday to the GP who visited (one week later than planned) to carry out a prescription review and to the district nurse who came later at the end of the day to remove the one remaining suture that had been missed before.

Buoyed up a little I decided on the spur of the moment yesterday to see if I could manage to "climb" the stairs that lead up to our converted loft area where we have a video projector and Nintendo Wii among other things. I enjoy "playing" golf on the Wii when the images are projected onto an end wall. It's also where I used to watch football and other sports. I refer to this as my "executive box". We have some friends from Germany visiting next weekend and thought they might enjoy "playing" some of the Wii sports and other games. I need to be up there however if only to act as gaffer and bark out instructions how to get the various pieces of kit working together.

With my new found flexibility I thought I might be able to sit on the first few stairs and straighten enough to lever myself up one at a time in a seated position. I tried up one step then down one step, following the physio guidance to first time users of crutches after hip operations. "Good - up to heaven, Bad down to hell". Essentially this means lead with the appropriate leg when going up or down steps while supporting weight on crutches ( or in my case my 2 arms on the step behind or in front depending on direction of travel). It worked!

The steps up to the converted loft area turn through 90 degrees so I checked that I could manage this as well. Despite this working out I decided against going " all the way" as I would need to stand up at the top from a seated position and work out how best to get seated from a standing position to come back down. I think this will be possible with help to fetch and carry the necessary aid such as crutches, zimmer frame or small stool.

Well that was yesterday and this is today - my birthday. My wife and I had decided if the weather was good enough last weekend to try to see if I could get out into the garden. When I tried with the physio 2 days before we could not see how it would be possible without 2 people standing by. However we did not try opening up both inside doors that lead into the porch. When we tried that this morning I had a less encumbered route using the zimmer frame. As before I first tried moving down a step at a time and making sure I could return safely before committing to the move. This worked for the first change in level and I then tried the final hurdle and once again felt secure enough in my ability to return ( albeit backwards) that I finally made the greatest leap of my recovery period and got all the way outside where the mobility scooter was waiting for me.

In the 90 minutes that followed I was able to help my wife in the garden as she tidied up, moved plants and planted some new ones. Our bungalow is built on a slope and below the lounge/ dining area is a garage space the land continues to fall away and beyond our front garden is the roof of a neighbours bungalow. Our drive however continues to the right of this bungalow and slopes down to the road. I scootered down to see if the neighbour at the bottom was in and in his absence scootered back up again. A few years back we replaced a series of gentle steps with a slope to link the 2 gardens so I can use this with the scooter to get all around the garden and fetch and carry tools and garden waste.

While I was able I also scootered into the garages we converted into a play room complete with snooker table exercise bike and multi gym. It is also full of furniture from both children who are both in rented accommodation at present. In addition this garage is where I keep a reasonable wine cellar. I have not been able to manage it for about 6 months despite occasional deliveries of cases of wine. I was at last able to sort out 3 such cases and will when I get the chance update the spreadsheet I use to manage the cellar.

One other thing I was able to accomplish while down there was to load Ubuntu (a linux distribution that I've been impressed with recently) onto one of the old computers that I keep in the garage (mainly for wine cellar and wood turning purposes - I keep wood turning videos and patterns on it for reference purposes as the lathe is in a room off the other garage).

It was a great feeling of release and of getting back to normal that I was able to share with another neighbour who came out to wish me well.

We did not try the car this time but that is going to be the next step in my expanding universe of activity.

Thursday, 24 April 2008

Almost There - but not quite yet

Its Thursday and the physio has just called around. In preparation for her visit I had a go on the elbow crutches for a few minutes before she arrived. I have felt better balanced recently with more control over the otherwise jelly like behaviour of my filleted right leg so thought I would experiment.

When she arrived we reviewed the email advice on the amount of weight bearing that should be aimed for, and what this meant for me. She was not too keen on me using crutches - not because of the weight bearing issue but concern over upper body strength. When I said I had experimented and was no stranger to using crutches - having spent about 4 years of the last 27 getting around on them - she thought it worth seeing for herself.

I manoeuvred out into the corridor and demonstrated my ability to balance for a count of 3 on the 2 crutches with both feet off the ground. I then proceeded up and down the corridor without my right foot touching down at all. The physio agreed that using crutches on the level was no problem at all. We both realised that coping with a step or two would be a different matter.

We discussed what exercises I had been doing and when I was still not able to push my foot forward when on the ground she decided it was time to demonstrate another exercise I could do. This meant both of us getting onto the double bed. This is something I can do with relative ease now and the physio was forced to admit admiration for my bedroom gymnastics!

The new exercise involves lying flat with my right knee bent and pressing down on a pillow folded in half. By pressing the back of my knee into the folded pillow (which acts as a fulcrum) my right heel should lift off the bed. That's the theory - try as I might - even when I felt there was some gap it was probably a couple of millimetres and not that visible. So definitely something to work on.

I asked if we could see what I might be able to do about getting out of the house. I demonstrated with the zimmer frame the limited extent to which I could move between the 2 front doors. We both realised that while I might be able to manage to get out of the 2 doors on crutches and manage the 2 steps down that would be involved I would not necessarily manage the return journey and certainly not at this stage unaided. So we looked at getting out though the conservatory into the back garden. We tried with zimmer frame and with crutches and even with the shower stool to see if it could be used on a small step as a half way house for the return "leg". But neither of us felt confident enough without a 2nd helper on hand.

As a result of these first attempts at fleeing the nest - with all the trepidation of a reluctant fledgling bird - we agreed to try again in a week's time provided the physio was accompanied by a colleague. In the meantime no doubt my confidence and control will improve still more so hopefully I shall manage to cross the final frontier then.

Sunday, 20 April 2008


Yesterday one of my short term goals was achieved. I finally managed to manoeuvre into the steam shower and sit down on the bench seat to enjoy a relaxing aromatic steam session. (A few drops of lemon having been added to the small recessed tray on top of the steam outlet )

I achieved this goal by backing in to the shower cubicle and bringing the zimmer frame right up to the perpendicular edge of the shower tray( instead of struggling to position it on the angled edge inside the shower tray that I tried on my first attempt). To turn the 90 degrees and back onto to the marble bench seat however required temporary use of a plastic shower stool ( purchased 4 years earlier when the hip was originally revised). I did not sit on it and then transfer as I had intended but instead was able to prop myself up using the 2 recessed hand grips on the sides of the seat and shuffle my feet through 90 degrees before reaching back for the bench seat and slowly subsiding onto it. I stayed there for 20 minutes stopping the temperature at 38 degrees C.

If the weather was more encouraging to family gardening I might even try to achieve another short term goal which is getting out of the front doors and onto my mobility scooter.

When I do I will attest to the fact as these are important goals on my slow path back to being a human again instead of a poor imitation of Davros of Dr Who and Daleks fame.... "determinate!"

Friday, 18 April 2008

Good news or bad news and passing it on!

The good news is that I received an email from the Orthopaedic Consultant's secretary who after speaking to both the Consultant and Senr Registrar was able to write "both said that you should be touch weight bearing only (less than 20% of your body weight) until your next clinic appointment in May". I've passed this on to the community physiotherapist. I also feel a little more confident about trying to manoeuvre both into the steam shower and out of the front doors when the time comes to try again as I had previously interpreted the advice as 0% weight bearing.

The bad news came when the district nurse came to remove the one remaining dressing over the exit hole of the previous freely draining sinus. She was concerned that it is red and discharging fluid which smells offensive and has deteriorated since her last visit on Tuesday. I pointed out to her what I thought was another suture along the incision line which she was able to trim and in the process of trimming pulled it out. She also then noticed a suture remaining over the sinus exit hole which also pulled out easily.

As one of the GPs from the local practice is due to call around this lunch time for a medication review, BP and blood sample the District Nurse has left a note ( on some recycled paper I keep in the study - a stack of A5 sized sheets from A4 one sided printed matter) asking the GP to review the wound and asking "does he need oral antibiotics?". The District Nurse was hoping to discharge me today instead she will arrange for another visit on Monday.

So the questions are: is this a sign of internal sepsis returning or is it superficial - maybe associated with the non dissolving suture? and what if any antibiotic would be appropriate both now and after a swab ( if one is taken) has been analysed?

While the district nurse was writing her note to the GP in the opportunistic manner described I was receiving calls from my son who was setting up remote access on my mother and sister's computer (in Harlow) so I can provide support when required (from Sheffield). We had earlier "proved the concept" using his own set up and mine and tried to transfer this to their equipment.

How different this is to the way the NHS tries to keep in touch. It did occur to me again that the NHS makes a very poor relay team as messages get dropped all the time. In these circumstances if the patient does not keep picking up the pieces and passing them on perhaps the "race" would never finish.


Its now over an hour after the latest time the Dr said she would visit so I rang the Surgery and explained the background. Despite the DR herself phoning and arranging the home visit it was not in the Surgery diary ( perhaps its because the Dr herself made the appointment over the phone and was then distracted). I was told that she had made a number of home visits and was now in her room with a patient. The Practice Administrator said she would speak to the Dr but it might mean another Dr may phone to see if he could advise what to do over the phone! Fortunately I still have 2 brands of oral antibiotics one of which proved less and less useful - both are what are called broad spectrum so hopefully the more recently ( and still in date) product could be used over the weekend if no Dr is able to visit from the practice. Yet another example of baton dropping - this time when being shuffled from one hand to the other of the same "runner"!


A further call to the surgery towards the end of the afternoon elicited some of the facts behind the missed home visit. The doctor concerned had to spend more time on more home visits than planned as as mine was for a medication review it was understandably thought could be deferred. We learnt that a blood test was planned for Tuesday and after that the doctor would visit to review the medication etc.

In the meantime the need for a doctor to visit to check out the District Nurse's concern had been noted and the most approachable and sympathetic of the surgery's doctors had agreed to phone to discuss and if necessary to visit. This doctor also knew more about the complex history than others and had a more immediate recollection of the salient facts. After a short phone call he agreed to call in after his last planned home visit which was nearby. In the event it was about 7:30 when he arrived and about 7:50 when he left. He examined the wound and spotted yet another suture around were the sinus had exited and been cleaned away. There was a little blood and even less discharge on the dressing that was removed. There was insufficient for a swab. After a call to the on call orthopaedic team it was agreed to keep a careful watch. If it pus developed then my wife could take a swab using the kit provided and drop off at the local hospital. We would then await an analysis before starting on oral anti biotics. If over the weekend the area became red and hot then we could start using the antibiotics still in date and left over from before the operation. In this event I would need to call the doctor to speak to him at the surgery on Monday. We talked about me sending an email ( yet another!) to the Orthopaedic Surgeon along with a digital camera image of the troublesome wound area.

Having covered all bases in this way both my wife and I felt comforted and the "elephant in the room" of possible amputation receded from our thoughts. We had discussed it and I had spent some time this afternoon as a result imagining life with one leg instead of being a one hip wonder. I came to the conclusion of this happened it would be the final posting and definitely not the excuse for a sequel!

Thursday, 17 April 2008

Nice and Kneesy does it (some of the time)

Over the last few nights I have managed to manoeuvre around in bed with relative ease - a sure sign that my filleted right leg is slowly returning to some usefulness!

As the swelling continues to recede and the ligaments seem to strengthen I get far less muscle spasm then before. I seem better able to hold my right leg in an upright position instead of it flopping over to the right so I guess that my adductor muscles are getting "stronger" ( less weak would be more accurate!).

As a result of this my confidence increased to the extent that I experimented with drawing both knees up while sat in bed. This transferred pressure areas so was a relief after spending an hour or two in one position flat on my back. Although I did not manage to sleep in this position I was able to gradually let my body roll to my left and was able to get into a foetal position in bed. Not surprisingly that is a position in which I can manage to get to sleep.

One adjunct of this increased maneuverability is that I am now able to slide my right leg down the bed from the bent knee position and reposition it so it is upright while flat on my back.

This in turn has contributed to a greater degree of flexibility in ankle rotation and also to a greater ability when sitting and standing to raise my right foot a greater distance from the ground. This is important because I now feel that I can manage to lift ,what was a dead weight of a right leg, a few inches off the ground and if well enough balanced on a zimmer frame could manage to cross a threshold or two.

My wife was sufficiently buoyed up by this to experiment with the zimmer frame and demonstrate how I could manage to negotiate the front doors. This "piloting" proved that it was technically feasible if I was able to hop a little. However I was at pains to point out that I also needed to feel secure enough to trust that I would not stumble. A case of one small step for a woman - a giant leap (of faith) for a one hip wonder. Fortunately my wife could see the sense of this temerity on my part.

A day later however I thought I might be able to manoeuvre into the steam shower we have in our bathroom. In the space that was previously taken up by a bath in its own enclosure we have for the last 18 months had a large walk in shower with a bench seat at one end. The cubicle was roofed and fully enclosed so we could plumb in the necessary equipment for a steam outlet.

This has been a great asset much appreciated by the family. As well as a steam room we can add oils to a small recess on the steam outlet and create a relaxing turkish bath. As I am unable to stand I will need to use a plastic stool in the shower for normal use. Up to now however I have drawn my power chair up to the large sink in the bathroom, which fortunately overhangs the cabinet by about half its depth and so is ideal for a wheelchair user, and washed while seated using flannel and towels.

This morning, with my wife ready to assist in the event of any problem, I tried transferring from wheel chair to zimmer frame (positioned inside the shower cubicle). The shower tray has slightly sloping sides so the zimmer frame could not be positioned as close to the wheelchair as I would prefer and required too great a leap of faith for me to try to walk into to the shower so we gave up that first attempt.

However on reflection I think that for the next attempt I will try to "walk" into the cubicle backwards. The outside slope of the shower tray is perpendicular so can be closer to where I need to step with my good leg. By positioning the shower stool ( which we bought and used 4 years ago when the right hip was initially revised) inside the cubicle I believe I will be able to back onto it and then either close the door and start the steamer or transfer from it to the bench seat as in normal use.

In a way - even though I have no formal rehabilitation programme worked out pending clarification about the extent of weight bearing that I should aim for - the ability to draw both knees up while in bed has proved a major milestone for me. It has enabled other movements and in passing has strengthened under used muscles. The physiotherapist who saw me at the start of the week did take a sympathetic approach to my rehab by saying that things would improve naturally as I felt more able to do things and so it has proven.

In conclusion its almost, but not quite, a case of "nice and easy does it all the time" (with apologies to Nordon and Muir!)

Monday, 14 April 2008

Daily Living - Progress Report (2)

So 2 weeks down and after some ups and downs I am still progressing. The community physiotherapist visited this morning and I was able to report a couple of things.

First I had experimented using elbow crutches albeit nervously and with my wife walking in front of me in case of any stumble. I did this without my right foot touching down at all but do not want to repeat it by myself until told its OK by the Physio. I also managed to make it half way out of the front door to collect post using the zimmer frame but had not tried to negotiate the half step to get me down to the level of outside.

Second I had become increasingly aware that while the swelling in my upper leg was receding nicely and was now soft the same could not be said of my lower leg. Having a history of superficial thrombo phlebitis in both lower legs I was beginning to worry about this and made extra efforts to rotate my right foot while seated. Unfortunately this served to exacerbate a painful right ankle. I mentioned my concern to the district nurse who visited on Thursday to change dressings and remove an additional suture I had felt an inch or two below the dressing for the incision. This suture was removed and the entire area redressed. Having used a heparin based cream called Hirudoid in the past to help "dissolve" away the blood that might have been clotting in my leg I said to the nurse I was running out and asked if this could be added to my prescription. She examined the leg and agreed although swollen and reddish it was not hot to the touch. It would however need to be watched carefully. She agreed to sort out the prescription even though she had not come across Hirudiod before but thought it might be useful for other patients in the future. I have in the past been readmitted to hospital following a hip operation for a similar condition - so wanted to avoid this if possible. In the event the pain in my right ankle was so great that my wife and I decided I should stay in bed to rest it. So an early night on Saturday was followed by all of Sunday in bed. Not only did the pain go but the swelling below my knee also began to resolve. I could make out the shape of a calf and when I "shook a leg" parts of it wobbled convincingly enough to believe that the bed rest was working. My wife and decided therefore that in addition to using Hirudoid and doing foot rotation exercises I should plan on a couple of hours of bed rest during the day until the swelling disappeared completely.

I explained all this to the physiotherapist who was booked to attend on a weekly basis. We discussed realistic goals such as getting out of the front door to use the mobility scooter around the garden, and possibly using elbow crutches and finally getting into my car albeit with someone else driving. I demonstrated my prowess with the zimmer frame and was shown a couple of exercises I could do while seated to develop muscles in my upper leg.

We could get much further however because of uncertainty about the extent to which I was expected to weight bear. The hospital referral letter to the community physiotherapy service had a one line description along the lines "1st stage hip revision - to gradually weight bear" I mentioned the concern expressed by the Senior Registrar about not weight bearing given the extent of bone loss and cement used. After a while we agreed I would email the Consultant's secretary to seek clarification and ask for a copy of any advice to go to the community physiotherapist.

Once we have this clarification she can plan a sensible programme for me for the next few months. In the meantime she agreed I should use the power chair rather than the zimmer frame but should include some use of the frame up and down the corridor to maintain strength in my arms which would be useful for when I do progress to using elbow crutches.

The then unabated swelling below my knee had concerned my wife who wondered what she would come home to after work on Friday. We both experienced a welling up of the frustrations about my current state that had up to then been kept beneath the surface. This taking stock caused me to see myself as others do and degenerated into self pity and loathing as well as a fuller acceptance of the millstone I had become to my wife limiting what she could do and dragging her down too. Of course this is a common problem for sufferers and carers alike and is unavoidable. We have however come through that - for the time being at least - and continue to soldier on together in the hope of better times ahead.

So with that in mind I must now make ready for a couple hours bed rest and foot exercises to continue the progress.

Thursday, 10 April 2008

Comings & Goings

After a disturbed night where I finally managed to get off to sleep around 4:30 a.m, today has been one of comings and goings.

The Health Care Assistant arrived to collect some more blood. I had earlier in the week been asked by the anaemia team at hospital if I could ask for serum ferritin and iron profile tests to be carried out at the same time. I rang the local surgery yesterday and a note was made of this request. In the event the message got through and the Health Care Assistant turned up with the necessary "Green Form" for these tests. This is noteworthy because collaborative sharing of information and willingness to be flexible has been allowed to lapse in recent years.

We talked briefly about gardening and computers and because she had not been able to make use of her notebook computer since her son had upgraded it from XP to Vista I showed her Ubuntu and Open Office and gave her an installation CD for both, which would get her back to being able to produce the odd invoice in Word and to use the Internet and email again.

When the she was about to draw blood the phone rang and it was the community physiotherapist calling to arrange a home visit for Monday.

Shortly after the Health Care Assistant left the door bell rang again. I was expecting the local hairdresser to call in on her way to opening up her shop. By the time I transferred from office chair to power chair the visitor had turned to leave.

On her way back to her car she spoke to a neighbour who confirmed that the man who has just had an operation lives where she had already rung the door bell. My neighbour had himself the previous day been to the local hospital for a hernia operation on a day patient basis but he was on the ball enough to realise that she meant me.

By the time she got the door a 2nd time I was waiting to gesture her to make her way in.

After making a cup of coffee I positioned my chair in the middle of the kitchen and she placed her bag of tricks on the breakfast bar and started to trim my hair.

When it was cut I found a soft broom and like a knight with a lance on horseback I proceeded to chase the fallen grey hair into a neat pile ready to dispose of (probably by feeding to the worms in our organic composting kit).
Before she left the hairdresser brought the post in and I saw that my imminent out patient appointment with the renal team had been pushed back by 6 weeks. Unfortunately as she left my son's cat who we had been looking after for the last 6 months decided to sneak out.

After having soup for lunch I settled back into the study and a few minutes later my neighbour let himself in and we compared operating notes for a couple of hours. As he left I asked if he could see if the cat was nearby and if so to leave the door open for him to return if he wanted. The cat was patiently waiting right outside.

No sooner has the cat settled down to a bite to eat than the front door has just opened - its my wife returning from work.

So now , before I have even published this posting I can tell her all about the comings and goings of this day as well.

Tuesday, 8 April 2008

Crossing one threshold

After a fairly uneventful night's sleep I spent the first 30 minutes awake waiting for a painful (and stiff) knee to settle down. After 30 minutes or so of gentle stretching - helped by my morning tablets which included some painkillers -, the pain subsided.

The District Nurse called to check on the incision dressing. It was a different District Nurse and one I have not seen before. She was however accompanied by the same trainee as on Thursday. No sooner had they entered than the phone rang and an Anaemia Nurse from the kidney institute of the local hospital rang. She asked how I was feeling as the last blood count they had (taken while still in hospital) had my Haemoglobin level as 7.8. I mentioned that I had some blood taken the previous Tuesday and was due to have some more on Thursday.

Having negotiated on the relative urgency of booking an ambulance for me to attend the clinic for an iron infusion - it was agreed to wait the outcome of the next blood tests provided they included Serum Ferritin and Iron Profiles and the results were copied to the Renal Team.

The 2 Nurses and I then made our way to the bathroom. I got out of the power chair and used the zimmer frame to stand up and drop my trousers and boxer shorts. To my surprise this was met by appreciative "ooh"s. Realising this was unlikely to have directed at my physique or any part of it suddenly coming into view, I joked that dropping my trousers doe snot always have that effect. They were in fact admiring both the length and neatness of the incision line and the suturing before commenting that the surgeon obviously took his time not to leave a nasty scar.

In the middle of the afternoon my wife dropped in for a few minutes and we tried to see if I could manage to cross one threshold and make my way into the conservatory. Although the floor is level there is a metal ledge for the door to locate against when closed that would mean lifting my filleted right leg and right foot about 4 inches off the ground.

In the event this was managed and what is more we also managed the return trip. I still can not contemplate doing this myself without anyone standing by in case of problems, but it was a start. It is also one step nearer to becoming mobile outside of the house.

The longest journey has now begun with that single step.

Monday, 7 April 2008

Daily Living - Progress Report (1)

OK its now 1 week since I returned home and 18 days since the operation to fillet my right thigh.

I thought it would be useful to take stock on a weekly basis to assess the extent of a return to normality. Aha! there's a bit of a problem there - first define normality.

Well a year ago normality was walking ( or rather waddling) with a walking stick about 50 metres before feeling discomfort. About 8 months ago normality was using 2 elbow crutches. About 6 months ago it was recognising I had become housebound and using a powerchair to get around indoors. 4 months ago it was increasingly being confined to bed. A brief period of respite occurred after the long term anti biotics were changed and I was able briefly, in the run up to the operation, to walk with one stick and was also be able to stand for short periods which allowed me among other activities to return to wood turning for a while.

Given that the filleting was the first stage of a 2 stage process I do not expect to be where I was a year or so ago for at least another 8 months or the end of this year.

My medium term target for normality therefore is to be able to get around with crutches, including travelling in a car (driven by someone else) or even managing to use a bus to get into the city centre.

So against this reasonable medium term target of normality what has the last 7 days seen?

Well with the swelling reduced but not gone completely I am able to manoeuvre into and out of bed without too much trouble.(albeit with the aid of the red slinky "transfer sheet" that would have been a godsend if used on the ward in the early days after the operation).

I can move around the house as well as required now that I have return to using the power chair. I have not yet managed to make it into the garden or to cross the threshold of either the front or back doors. Once I can do this and use elbow crutches an acid test of "normality" will be my ability to top up the squirrel proof bird feeders in the back garden.

Toileting and washing are manageable, although at night I still prefer to make use of an improvised urine bottle and associated bucket instead of getting into and out of bed when required. I have not yet had a shower or bath ( I was told not to have a bath for a couple of weeks after returning home) but hope to manage a steam shower in the next week.

I can sort out tea making and even making beans on toast if required, although most days I just need to reheat or microwave soup or leftovers for lunch.

My sleep pattern may be returning to normal, which was 8 hours sleeping through. For most of the last 8 months however "normal was to wake every 2 hours ( with pain) and after a waking gap of 30 to 90 minutes to resume sleeping for a further 2 hours. Sometime I would managed 3 such iterations per night.

This pattern was reinforced while in hospital and has continued through until last night. The waking periods however have tended to be 20 - 30 minutes and I am no longer waking up with pain. Last night I did manage a 3 hours session of sleep and am encouraged that this will not prove a one off.

During this last week I was able to complete the transfer of broadband provider from BT business Broadband to the Post Office. Our home LAN consists of 4 PCs 1 laptop, 1 Wii games console and up to 5 Internet cameras. The cameras are increasingly important as they allow me to have advanced warning of anyone coming to the house. I have reinstated 2 cameras for now. One camera points down the drive at the front of the house and the other is adjacent to the front door.

The post office set up is intended for 50+ novices so comes with a modem or wireless modem router which sets itself up after recognising the telephone line it is connected to. The router however uses a different range of IP addresses to that I have used in the past. Prior to the changeover I used fixed IP addresses for all resident equipment and allowed a couple of guest addresses to be allocated for visiting laptop users. All wireless activity was encrypted using WEP keys. I firmly believe its easier to learn something new for the first time than it is to "unlearn" something when updating systems.

I think I have been very good at "unlearning" and adopting new paradigms, particularly when it comes to IT and software. This is just as well as all resident devices needed to be "reprogrammed". I also had to arrange for Internet cameras to be swapped around. My wife who hates wires nonetheless agreed to do the "labouring" required while I acted as a remote gaffer issuing instructions.

I do not envisage any similar technical challenges this week. However I am about to try to arrange for a local hairdresser to visit at home to cut my hair - she had previously said that this might be possible but I have not yet put it to the test.

I also intend emailing 2 hospital consultants this week to see if forthcoming out patient appointments might be managed over the phone instead, supported by the GP surgery's Health Care Assistant visiting to take any blood required for monitoring purposes. There is a meeting on Friday afternoon that I would love to attend but do not think this will be possible. I will therefore try to submit comments and observations to others so they can be discussed if appropriate. Another meeting in 2 weeks time, of a Clinical Audit Patients Panel, is something I will try to see if it can be relocated to my house instead of its proposed location in health authority offices.

I have not yet heard from the community based physiotherapy service but rang the hospital on Friday who said they would look into it but knew that there was a long waiting list for the community service and told me that normally they get in touch a day or two before the start of a domiciliary service.

Finally I should report that the pops tweaks and twinges has lessened considerably. As a result I do think I am now in need of advise as to what I can and cannot do to accelerate further progress. I am still unable to rotate my right leg easily although I do try to tighten adductor muscles now and again. When I do "stand" upright ( on one leg) the right leg is turned out about 90 degrees. This would be quite acceptable if I was a talented ballet dancer but is a little disconcerting in my present state. You may have noticed that I excluded ballet techniques from my definition of normality!

More progress reports will follow on a weekly basis.

Saturday, 5 April 2008

Thawing Out Nicely Now!

16 days after surgery and although still swollen my right leg is beginning to thaw nicely.

I started to notice yesterday that it was looking less like the leg of a Michelin Man as I could gradually discern a knee reappearing followed by the top of a calf. At the same time the feeling of having a 2 inch strap tied tightly around the middle of my right foot started to ease up.

When I wriggle toes and tap my right foot it stretches things that have seem fixed and begins to send messages of mild pain, that have so far been absent, to my brain.

Instead if being interpreted as a useful indicator to stop doing something this pain bores right through to my conscious thoughts as "ooh - that's good .... some feelings at last, its good to feel alive".

I realise this might sound somewhat masochistic but I remember having similar thoughts as a child on a frosty morning when the tips of my exposed ears would feel like they had been stiffened by an iron rod. Even more extreme was the thawing out process on Saturday evenings in Winter when after working all day on local market stalls and having loaded up unsold produce I would stow away trestle tables, canes and tarpaulins ready for next time. Even with gloves the ends of my fingers would turn white. They stayed that way during the bike ride home.

Even with my hands around a hot mug of tea the finger ends stayed white. but by the end of Dr Who however, as the blood once more seemed to pump through them, I experienced a numb sort of pain that felt like the bones had been replaced with iron bars.

That feeling is once again returning to parts of my right leg and I am experiencing similar emotions now. There is a reawakening of numb pain and at the same time a welcome that things are getting back to normal. I know that in time , perhaps another week, the messages to my brain will be of the boring "everything OK" nature that makes the conscious mind forget about the existence of various appendages. But for now its a case of "ooh!" allied to "its good to be alive" - Thawing nicely in other words.

Prescribing Nightmares

Today I repeated a monthly routine of stocking up 4 weekly medicine packs. Each has 7 daily containers which are further subdivided into sections for morning, mid day, afternoon and night. Each daily container has a sliding top. For the last 4 years I have allocated around 1000 individual tablets each month into appropriate sections. 200 of these were antibiotics ( 2 x 500 gram tablets 4 times a day). Now that I no longer need oral anti biotics the task has become a little easier. It still requires careful concentration and takes about 1 hour to complete.

Even with this careful approach I usually manage to mis-allocate 1 to 2 tablets each month. An error rate of 0.1 -0.2%. I am more conscious than most of what medication I am on, what it is for, when and with what it should be taken. I am therefore amazed that medication related incidents are not more of a problem than appears.

The nurse in charge of the drug cabinet on any in-patient ward is often rushed and/or interrupted by patients who want to draw attention to one need or another that has not been attended to earlier. Occasionally the nurse gets called away to help with another patient in another area of the ward or has to "cadge" or borrow tablets from another drug trolley to be able to complete the task. In my experience it is equally likely that the drug trolley will be left unlocked on these occasions as that it will be locked before leaving it unattended. I believe that under these conditions the error rate will be higher than what I manage to achieve when I have no such distractions.

Is this a real problem if the error rate remains less than 1 in a 1000? Well I think it is. A method of quality control which is increasingly being used in commercial organisations is 6 sigma. (based on the number of standard deviations from an average value that describes a distribution of actual measures. In statistical terms 3 standard deviations usually includes 99.99% of values in a normal distribution of measurements). 6 sigma companies strive to design and operate processes with a failure rate of 3.4 per million or less!

To be fair, my most recent in-patient experience had fewer drug related incidents than usual but nonetheless did follow the trend I have experienced since 1982 of having to query some of the tablets dispensed to me as part of the usual ward "drug round". There were 4 unreported incidents this time around:

  • Despite several weeks before producing a list of current medication from my G.P. the ward did not have all of my medication available. I brought in a week's supply in daily drawers - not in original packaging.
  • My steroid treatment was interrupted after the operation and it took a couple of days to resolve. Interruption to steroid treatment can compromise a patient's immune response to infection so I had to prompt for the treatment to be resumed. When it was resumed the ward could not dispense the 7 mg that I was prescribed (1x5mg and 2x1 mg tablets) as it only had 5mg and 2.5 mg tablets. For the rest of my stay therefore we "raided" the daily drawers of the weekly pack I brought in with me and when that ran out my wife brought in a second weekly pack. In the event the difference between 7mg and 7.5 mg daily was not too great a problem but given the advance notice of my regular medication I could not understand why this happened.
  • I have chronic anaemia due to renal impairment. I have been receiving weekly injections delivered to my home and stored in a fridge to help boost my iron stores and haemoglobin levels. A few months back the weekly dose was doubled to 2 injections each week. My wife and I decided I should have the double dose at the same . My wife brought the double dose in pre-filled syringes ready to store on the ward. Unfortunately the drug card was written up for the single dose only. So on the day after the operation I was given a single dose instead of the double dose I expected. We discussed this with several nurses and eventually it was agreed that I could have the second syringe 4 days later. By this time the ward had ordered their own supply - but only a single dose each week! Knowing I would return home before too many weeks elapsed my wife and I resolved to sort things out once we returned and to be grateful for whatever the ward staff felt able to provide.
  • The anti hypertensive regime that I am on includes furosemide ("water tablets") and enalapril among other medication. It was important to stop taking the enalapril the night before the operation and to restart the next day. In the event my blood pressure readings tended to be on the low side of normal and it was decided in the Post Operative Surgical Unit to stop the furosemide and restart the enalapril . Only 3 days later when a renal physician visited me on the ward did he say that the furosemide should have been restarted first and then, only if required, the enalapril. So 5 days after admission I reverted to my normal daily medication albeit taken at different times and supplemented by some of my own tablets.

When the ward pharmacist visited we discussed these events in a calm manner and both of us understood and agreed that the level of drug related incidents in hospitals generally is significantly under reported and left matters like that. Its just a fact of hospital life..... sadly. Perhaps once MRSA , C.difficile and other hospital acquired infections are sufficiently controlled attention might shift to reducing the level of errors related to hospital administration of patient drugs.

Now don't get me wrong my recent experience of potential drug administration problems is one of the better examples - honest! I won't bother to describe in detail the others but will just relate 4 earlier examples:
  1. In 1982 I queried why I was being asked to take a large dark blue tablet I had never seen before. When I could not understand the explanation that was given I flatly refused! Now this was apparently one "incident" that was reported, I guess because the nurse concerned needed to cover herself in the event of any problems. The next day however the nurse manager for the unit did come to see me and apologise, she confirmed I was right to refuse the drug as it was a powerful unlicensed one but with toxic side effects intended for another patient. She was happy when I confirmed that I would not pursue the matter any further. I was naive in those days and would not agree so readily any more.
  2. In 1995 I was admitted as an emergency and mentioned to the staff concerned that I was on some medication for hypertension that was prescribed when I was working in Saudi Arabia and although not much used in the UK was still available but should not be stopped suddenly as it would cause a "rebound" in blood pressure levels. Sure enough having been denied this particular medication for 4 days, despite daily protestations on my part, the predicted "rebound" occurred and I was discharged with uncontrolled hypertension and a referral to the general medical unit. It took the best part of 18 months to reintroduce then gradually wean me off the drug and onto a different regime.
  3. After the emergency admission brought on by a warfarin induced massive bleed (described elsewhere) I was nursed on the urological ward for about 5 days. At this time my renal function had worsened to the extent that I was due to be added to the transplant list and was being prepared for regular dialysis. ( Over the last 4 years for a reason no clinician yet understands the situation has reversed considerably) I was at the time on a restricted diet and had to avoid food high in potassium which my kidneys could not cope with and if the levels were too high it would have implications for my heart. One way of ameliorating the effects of phosphorous in food is to chew calcium tablets with meals, particularly those which included meat. It was important that the calcium tablets were chewed with the food as this would help "bind" the phosphorous" and it would not therefore be as much of a problem. For 3 days I persuaded the ward staff to leave the calcichew tablets at my bedside and I would chew them with meals as required. On the 4th day a rather officious staff nurse decided that this could not be allowed so she confiscated the calcium tablets. As a result meals came and went and I could not bind any phosphorous content as before. What is more - as if to add insult to injury - the same nurse would do a drug round 2 hours after I had eaten and ask "Have you had your calcichew yet?" When I said no because you had taken them away she would "dispense" 2 and wait for me to chew and swallow them. She assured me she was after all responsible for the safe use of my medication while under her care!
  4. When the post operative sepsis struck for the first time I was very ill and my renal function plummeted. The orthopaedic doctors completely failed to notice this and surgery was delayed several days. In fact they were ready to discharge me until the renal team were consulted at my insistence. They "rescued" me and I was transferred to a renal ward where I had dialysis for 2 weeks during which time the infected wound was cleaned out under anaesthetic.

    When my medical history was taken by the junior doctor my wife who was present at the time (and a doctor herself) commented that the junior doctor took no notes, When my wife questioned her the (self assured) junior doctor said it was OK she found it better to write them up afterwards.

    For 3 days thereafter in my weak and feeble state I succumbed to the nursing staff fitting a mask over my mouth and using a nebuliser to aid my breathing. I questioned this and was told "its OK the doctor has written you up for it". Eventually my wife queried this and discovered the junior doctor had written up a misleading medical history and added asthma to my list of ailments! Once we stated that I had never had asthma the treatment was withdrawn. We think the junior doctor confused me with another patient who was probably denied his nebuliser over this period.

Less you think I am just plain unlucky I will relate one further example that was relayed to me 3 years ago - by my favourite District Nurse. At the time I was a Patient Governor with the local Acute Hospitals Foundation Trust. We shared a number of concerns and I was told of a patient she had gone to see who "went off" with bad heart palpitations and needed to be readmitted as an emergency. The reason was that the patient had been fitted with what is called a "peg" on the ward which allows quicker absorption of medication direct to the digestive system ( I think!) Because the medication can be delivered to where it is most needed it doe snot have to be taken by mouth and as a result can be more effective at lower doses. Having run out of the lower dose version of the medication ward staff had prepared this patient for discharge by crushing the (higher strength) oral form of the tablet and forcing it into her via the "peg".

Interestingly I was unable to follow this incident up and it remained unreported. The reason? Patient confidentiality! The District Nurse had no right to pass on the patient's name or hospital number to me and she complied with this restriction for fear of losing her job. As a result whenever I mentioned this problem to the hospital's pharmaceutical, nursing and general management staff I could not substantiate the details and the "story" was dismissed as "unsubstantiated and anecdotal"!

This is one more example of why I believe Patient Confidentiality is in danger of being abused by some professional staff ( keen not to have their actions judged by others) rather than being to the benefit of patients themselves.

I did warn at the outset that this was an X rated Blog .... so as they say on Crimewatch "don't have nightmares".

Friday, 4 April 2008

Therapeutic Benefits of Blogging

Its just after 4:45 a.m. and I woke up about 30 minutes ago with an itching feeling all along the incision line running down my right thigh. I had been lying on it asleep for the last 5 hours or so and could not easily get any relief.

The previous afternoon my favourite District Nurse (who I had not seen for about 3 years) arrived with a trainee to change the dressing over the incision and to remove any remaining sutures that had not dissolved. There were about 6 and from the description given to the trainee they had been pulled relatively tight and had overgrown slightly with granulations. It sounds worse than it is and the Nurse was able to remove them skilfully and without any sense of tugging. Earlier that morning I had begun to experience an itching along the incision line which I put down to (1) the drying out of the adhesive of the 2 long dressings covering the wound and (2) the taut drying effect of cut tissue under repair. (I had begun to think about the possibility of applying lanolin or similar to soften the affected skin.). This feeling was relieved by the change of dressing and removal of the remaining sutures and I thought no more about it.

I have already described how of all the circles that describe my current existence the one related to my time in bed is the smallest of all. So despite the expanding world that resulted from reinstatement of a foot plate to the power chair described in an earlier post I woke at 4:00 a.m. wanting to get some relief from the itching but unable to move sufficiently until I got out of bed. What stops me at present from extending my world outside of the house are the thresholds of both front and back doors, Each would require lifting my right leg over a ledge about 3 inches high while striding toward the zimmer frame 1 step down. Although I do think I will manage this in a few days time I did not feel so confident at 4 in the morning!

The realisation that to all intents and purposes I was "trapped" inside the house caused a mild panic attack and feelings of claustrophobia. As a result I felt compelled to get up and after making a cup of tea in the kitchen, moved to the study where I Was able to open a window and hear bird song through the conservatory that the study window opens onto. A cool breeze also helped and the feeling passed.

It was 4 1/2 years ago that I had my first ever experience of claustrophobia. The cause was being inserted into an old style MRI scanner closed at one end, with little air flow. I slid in, on my back, head first toward the closed end. The width and height of the tube into which I was inserted was not much bigger than a coffin. Only my feet protruded into open air. I needed to stay still inside this tube for around 30 minutes while the scanner thumped and bumped around me. Fortunately a follow up scan a few months later made use of a more modern scanner which was only a couple of feet in depth and was open at both ends so my experience should not cause anyone else nightmares as the chances are there are not many of the old style scanners still in use.

The reason I needed the scans is a sorry tale in itself. I had already waited over 3 years for the operation to revise the right hip joint that had lasted about 23 years but had loosened and protruded into the pelvic cavity. (This would require a degree of remodelling of the pelvic bones to restore the damage that had occurred.) I had complained about the long wait and had an unsatisfactory exchange of letters with the local hospital. When I was eventually admitted I did have some doubts as to whether my treatment would be affected by complaining. As a result I think I was more anxious that I had been for any previous operation.

The night before the operation my heart rhythm was abnormal and required a single tablet (amiodorone)to restore normal sinus rhythm. All heart monitoring both immediately before and after this lone event were normal. (I have since discovered that about 1:10 cases of atrial fibrillation are one off events and need no further intervention once corrected) The operation was postponed and I was started on the standard therapy of warfarin, which thins the blood. I was required to attend a clinic on a regular basis to monitor the thinning effect of the warfarin and for the level to be adjusted up or down until a satisfactory balance had been found. The operation would be re-arranged once a satisfactory level of warfarin therapy had been established.

In the event within 1 week of starting on warfarin I was admitted on a Saturday afternoon as an emergency with symptoms of renal colic. I was placed under the care of the urology department and given oral morphine to alleviate the pain. On the Monday morning my Haemoglobin had dropped to 4.2 (A normal value for a male is around 14) it became obvious then that I was suffering a massive bleed into muscles in my back and this was pressing on urethra and kidneys - thus causing the colicky pain (the Soas muscle was the one affected in this way). Fortunately the warfarin was stopped immediately once this was realised and I was given a dose of Vitamin K which helps the blood to clot and prevents serious bleeding. Heart traces again showed that I had no problem and it was agreed that I should have no further blood thinning regime.

The clinical judgement to start me on warfarin was standard practice and the clinicians concerned (even in the light of its consequences for me) have said they would have to do the same again. I know that warfarin therapy continues to be one of the most fraught and hazardous of medical interventions and that what is required is a decision making strategy that works out for the best overall even if not in specific cases. However there is no escaping that this is yet another example of an iatrogenic (caused by doctors) condition that I have experienced and could have done without.

I could also have done without the claustrophobic feeling brought on by being inserted into an old style closed MRI scanner which the urologists insisted on before pronouncing an all clear for the orthopaedic surgery. The surgery in turn resulted in post operative sepsis and the resulting and recent filleting of my right leg from which I am currently recuperating.

With that realisation I have not only come "full circle" but fortunately I have also managed to put behind me the claustrophobic feelings that caused me to get up so early this morning in the first place.

I had not fully appreciated the therapeutic benefits of blogging until now!

Thursday, 3 April 2008

Liberated by an Expanding Archipelago

I was reflecting yesterday on how my world had again contracted and drew a diagram of small connected circles. The diameter of each circle represented the degree to which I could move or more accurately stretch from a seated position. I drew a small circle to represent my office chair from which I could reach a couple of PCs, DAB radio telephone and "at a stretch" a printer.

From this central circle I drew a very short line to an even smaller circle which represented the toilet I would visit a few times during the day, slowly pushing my way around behind a zimmer frame. Another short line led to another small circle in the kitchen where my wife had arranged a flask of cold milk next to our kettle , jug of cold water and tea, coffee and sugar before leaving for work in the morning. A slightly longer line to another very small circle represented my journey to bed each night. This was the smallest circle of all - once in there was no moving out until the next morning, courtesy of improvised urine bottle and bucket by the bedside should it need emptying during the night.

During the months leading up to being overwhelmed by the post operative sepsis I was aware of the contracting nature of my world. At first travel by bus was sacrificed and I relied entirely on using the car. Then I relied on other people driving and finally became housebound then confined to bed. At the same time I came to rely first of all on a walking stick, then 2 elbow crutches and finally invested in a powerchair to get around the house. This chair took some finding as it is a rather neat design with small wheels, a thin base which houses a lithium ion battery similar to those in laptops, and a central adjustable column on which is mounted something resembling an office chair. It doe snot look at all institutional which was important to my self image. The difficulty in acquiring it was due to the fact that this "shopper chair" designed to disassemble quickly for use around local shops was replaced by an all in one folding design which required tubular steel struts and braces. As a result it looked very much like an institutionalised wheelchair.

After a few abortive orders I eventually found a dealer who still had one of the old design in stock. When it arrived the delivery van driver announced "its the only one left in the country still on sale".

For about 4 months before becoming bed ridden this extended my world inside the house and I had planned on using it once I returned home after the filleting of my right leg. In my pre op chair riding days I had removed the footplate from the front of the chair and was able to pull my knees up to place my feet on the flat platform beneath the seat to which the wheels and battery were attached.

I had removed the footplate and its support bar to the garage which I could not get to when I came out of hospital. So on Monday, Tuesday and most of today (Wednesday) the chair remained unused and as a result my life remained proscribed by the small archipelago of very small islands in which I could "live, move and have my being" that I have just described.

This evening my wife - bless her - found the discarded footplate and support bar and we managed to reassemble it. Once back in place I was able again to make use of the powerchair. Of course I did need the help of a strange long handled and stiffened loop that I was given by the occupational therapist to help lift my right leg ( imagine a dog lead around the head of an invisible dog and you'll get the picture) onto the footplate - but I was temporarily overcome by the sudden explosion of my personal space.

I have since travelled to most rooms in the house and looked out of windows onto men cutting trees in neighbouring gardens, birds using the squirrel proof feeders we have around our garden and squirrels hanging upside down in the feeders we have given up on as offering any sort of deterrent.

My personal space diagram now has longer lines leading to more and larger circles. I am still housebound of course but suddenly "the world has opened up" for me once again! In time I guess it will extend outside the house to our garden where I can use a mobility scooter to help with chores. Later still I hope to manage to travel in my own car again - albeit driven by others.

I hope you now understand why I really do feel liberated by an expanding archipelago and what is more one with potential for further expansion in the weeks ahead - hope springs eternal!

Tweaks, Pings, Pops Snaps and other Painful Sounds

Almost immediately I was transferred from POSU ready for return to the orthopaedic ward I realised that I would have to get used to ligaments being stretched, tendons cracking and other connecting tissue around my knee reacting to the slightest movement. Unfortunately all of these twinges were accompanied by peculiar feelings as things dropped into place for a while and announced the fact with the strangest of noises. Added to this was the readiness with which such muscle as remained would go into spasm at the slightest provocation.

Over the next 9 days I would gradually regain some muscle tone and as the swelling reduced was able to extend my limited range of movement. For most of that time however I had to support my right leg under the thigh as the dead weight of the leg being pulled down by gravity was a painful reminder of the extent of damage, to the soft tissue of my right leg, both before and during the operation.

Any transition from bed to chair or back again and standing up to plod short distances behind a zimmer frame with front mounted (alloy?) wheels was difficult for most of the time that I spent back in the orthopaedic ward.

Given time I could manage but unfortunately although there were a few exceptions most of the nursing staff had insufficient time to let me move at my own pace. As a result I would be pulled and dragged or encouraged to "get it over quickly". On one occasion the nurse who came to assist getting me out of bed came complaining that unlike her colleagues she had not had a cup of tea yet and that although one was waiting for her it was getting cold. I suggested she return after she had her tea, but she would not have it. This was even more galling because the morning before the hospital's coordinator for patient lifting and handling was attached to the ward and both skilfully and patiently assisted me getting out of bed. She adopted positions that allowed her to support the dead weight while I controlled the pace of movement from straight leg to bent and to from the middle to the end of the bed.

Movement around the hospital bed was difficult as the contact points (buttocks, elbows, heels, knuckles etc) sunk into the mattress and had to overcome the inertia of the less than slippery sheets. Perhaps this is why I was given a slippery red tube when I left POSU. ( I later discovered at home that when placed under the dead weight of my contorted right leg it could slide around with barely any effort. - so that's how it works , what a good idea, just a pity that advise about using this simple solution had not percolated down to the ward staff - no doubt in a few months it will have done).

Knowledge of appropriate patient lifting and handling techniques among nursing staff was very random. Sometimes without me needing to ask a nurse would automatically provide support without trying to force the pace of movement. I was very grateful for this whenever it happened. At times a nurse would need to be reminded to take it slowly and would oblige but this was not the hoped for and ideal automatic empathy that I just described. These nurses were sympathetic. Then there were the nurses who have seen it all before and believed in tough love. Funny whenever they "helped" I seemed to have more problems with involuntary muscle spasms as well as having to endure all those tweaks, pings, pops snaps and other painful sounds.

One day I came across an empathetic male radiographer who not only seemed to instinctively realise what a wimp I was but patiently and skillfully took the weight of my right leg while together we manoeuvred my body onto the x-ray table. During the process I experienced various twinges and popping sensations and what is more the radiographer felt them too! At last someone who was not only empathetic but could also experience the feelings even if only in a vicarious manner.

Despite my previous experience of 4 hip replacements I had not realised until I became a "one hip wonder" the importance of both skilful and empathetic handling and lifting by nursing and other staff. In the light of my recent experience I have therefore come to the conclusion that aditional attention needs to be given to patient handling and lifting during basic nurse training and updating courses.

Wednesday, 2 April 2008

On The Post Operative Surgical Unit

The operation for the filleting of my right thigh ( to remove infected bone and soft tissue along with the metal implants that had contributed to the 4 years of post operative sepsis) took a little longer than planned.

I was given an epidural ( for the second time in my patient experience) for which I was glad. Because of the past history of Crohn's disease my previous experience of General Anaesthetic followed by days of lying flat in bed has been that I would be sick for many days and then bloated.

I now know that these conditions contribute to pseudo obstruction of the bowel - for me at least. The treatment for this has in the past involved the insertion of a tube into my stomach through my nose with a small bag attached to collect stomach secretions until the pseudo obstruction resolves itself. The devise is called a nasal gastric tube. Not only is this process painful but to my mind moves me significantly, toward the alien end of the human/alien life form axis!

The other contraption that has a similar effect is the insertion of a "central line" into the side of my neck. This contraption consists of a plastic tube from which a number of other plastic tubes split off to be connected to monitoring devises and/or therapeutic equipment like kidney dialysis machines. I have had a central line inserted three times ( in fact during each of the last 3 operations) fortunately all done while under the influence of an anaesthetic.

I have never had to endure both nasal gastric tube AND a central line at the same time and think If I did I might never re-emerge as human but would remain completely alien - in my mind at least!

Because of my history of renal impairment I was due to be nursed after recovery on a recently opened Post Operative Surgical Unit. This is less invasive then intensive care and is separate from an associated High Dependency Unit. Its purpose is to provide a facility to enable constant observation, monitoring and specialised treatment after an operation.

I went down to theatre around 1:00 p.m and recall 3 occasions when the general anaesthetic must have worn off sufficiently for me to hear the sound of hammering ( to remove the old implanted hip joint) and feel the effect of the hammering moving me up ( or down) the table. I mentioned this afterwards to the Senior Registrar who commented that yes I had tried to "assist at times". I asked if this meant was I talking and giving advise? To which he replied "no you just decided to flail about a bit!"

Around 8:00 p.m I regained consciousness. I noticed my wife was sitting at the end of the bed. I think I acknowledged her but was unable to converse much at the time. I gathered however from the discussion she was having with the young doctor attending to me that the operation had not gone altogether as smoothly as planned and that I was in a state of shock. All I can remember is that Martha - the nurse assigned to me - was asking questions and I that I felt very cold.

I could see that to my left was a computer screen split into about 8 displays of what I assumed were traces of heart rhythm, blood pressure, respiration among others.

I was aware that in response to saying that I felt cold Martha reached behind my head to the right and I felt warmer. I noticed that in place of a sheet and blanket I was under a series of plastic / paper tubes about 3 inches across. There must have been sealed double layer around each tube and it was into this space that warm air was circulating to warm me up.

I next looked under this arrangement and saw my right leg, which I could not feel. The word "akimbo" came to mind as did the image of Meryl Streep in "Death Becomes Her" after tumbling down stone stairs shortly after becoming to all intents and purposes immortal. It was not a pretty site. My right foot was turned completely out. The outside of my right knee ( slightly bent) was lying flat against the bed. I also noticed how swollen my right thigh was. I am used to the swelling involved in normal hip replacement but this seemed more excessive than normal. All in all I had no feeling of my right leg belonging to me and what sensation I did have was analysed by my brain as a lumpy mattress on the right side of the bed!

I was vaguely aware of saying goodbye to my wife as she left. Richard the young doctor returned from time to time - on one occasion he had to re site an arterial cannula. This, along with the central line inserted in my neck allowed very accurate monitoring of various vital signs. I could see the small contact that was reattached after the cannula was successfully inserted and remember thinking about "nano technology"

At this time I therefor had a venous cannula through which I was receiving fluids, an arterial cannula for monitoring purposes, a catheter, an epidural line into my back, a central line on the right side of my neck. In time each would be removed as I would revert to being increasingly human again. Fortunately there was no nasal gastric tube to achieve a full house!

Around 2:00 a.m. I think I had recovered sufficiently to be conscious and to my surprise was asked by Martha if I wanted anything to drink. I assumed this would mean, as I had experienced before with a very dry mouth, sucking on a sponge lollipop followed by sips of water at 15 minute intervals. To my surprise Martha was offering to bring me a beaker of coffee complete with spout to aid drinking. What is more I was even brought some toast and marmalade!

About 6:00 a.m I became aware of staff coming and going and handing over. Richard introduced me to Amy who would be taking over from him and would ensure I was fit to return to the ward later that morning.

A few hours later Amy returned and ensured I had some more food - in this case some vegetable soup which as she said would do me "more good than all these fluids and drugs were putting inside you."

I was shown a red silky half sheet that was in fact a roll of smooth cloth. Amy said that this should accompany me to the ward and be used to assist in moving me around the bed when required. It was never used for this purpose and was in fact discarded. I did however make sure it was taken home with me ( it was labelled "for single patient use only" so I assumed it was disposable) as I thought it would help me get into and out of bed with my swollen unco-operative right leg.

I will reflect on the potential benefit of this patient handling "device" in later postings as I recount my experience of differences among the ward nursing staff in their understanding of the importance of patient handling techniques generally but particularly for those with no hip joint.

Tuesday, 1 April 2008

The full (summarised) medical history

To put my current health status into context I have reproduced below a summary of significant health events in my 58 years of life. This is important because I have "multiple co-morbidities" -or in other terms a lot going on.

I am reminded of the description in I Claudius of the reason for his relative longevity being that the various maladies that plagued his body could not agree among themselves which one would claim the credit for finishing him off!
The sad fact is that the 5 ( and counting) hip operations I have had were avoidable. They were iatrogenic - in other words caused by doctors!

In my 20's I was treated with episodes of steroid treatment for what was then diagnosed as Chrohn's / colitis with associated poly arthrithides. In other words I had a form of irritable bowel disease which also affected my joints. About 15 years ago I underwent an operation for the removal of the affected sections of bowel and have suffered far fewer symptoms ever since.
Despite concern with bowel function being replaced gradually with concerns about renal function the damage caused by the pulses of steroid treatment in my 20's has occupied much of both my time and that of the local health service in the last 20 years.
It seems to be accepted now that on and off treatment with steroids in young people can cause necrosis of blood supply to the head of femurs. The result is that the surface of the rounded end of the hip bone ( or femur) becomes knobbly because it is denied a normal supply of blood cells. This then rubs up roughly against the cup into which the rounded bit of the hip bone rotates and as a result movement becomes restricted and painful.
Having attributed my hip problems to a poor understanding of the side effects of steroid treatment in young people I am not in danger of descending into pitiful victim mode. I understand that the extent of medical knowledge at the time meant that different consultants really were acting in the best of faith and also realise that had I not been treated with steroids when the Crohn's disease first manifested, I would probably not have survived very long.
So here, for the record, is a summary of what I gathered together (as part of a PhD study thwarted by the post operative sepsis 3 1/2 years ago into the implications of lifelong electronic health records):
For what its worth as a patient with "multiple co-morbidities" I have no problem at all with confidentiality if it better helps overcome the otherwise disjointed nature of the health care I am likely to receive. In fact I sometimes suspect that when clinicians seek reassurances about patient confidentiality it is really their own actions that they are seeking to suppress from the possible judgement of their peers.

Baby Boomer - Less Hip these days

This first posting is by way of an explanation of both the name and purpose of this blog.

After 4 hip replacement operations in the course of 27 years (2 of which would be regarded as successful and 2 as being troublesome) I succumbed to a post operative infection. After 4 years of large doses of antibiotics taken by mouth this eventually overwhelmed me and required removal of all implanted metal work to combat the infection before a potential 2nd stage operation to implant a new hip joint could even be considered.

I returned from hospital today (31 March 2008), after a 12 day stay as an in patient. I have a follow up out patient appointment booked for 6 weeks time. The district nurse is due to visit in about a week's time to check that the sutures have dissolved and if not to remove any still in place. I am also expecting to see a community physiotherapist on a weekly basis for the next 12 weeks or so.

In the meantime I am having to live without a functioning hip joint in my right leg. So I am (almost by definition) a less hip baby boomer than I used to be!

Other postings will look back both to what led up to this point and to some reflections on the gradual changes in lifestyle that ensued. In general though I will try to share what life is like coming to terms with what my daughter described as being a one hip wonder. My daughter reserved the Blog name for me, while I was in hospital, in the expectation that I might want to share my experiences. I had independently come to the conclusion that, as there was no patient leaflet to prepare me for what I was experiencing, it might be a good idea to create one. This blog will therefor serve as a valuable source of raw material for such a patient leaflet in the future.

By virtue of the descriptions of medical conditions and procedures that will feature in some postings readers should be warned that this blog will not be for the faint hearted!

As an example of the potential X rating of this blog I will try to describe the extent of the filleting that took place 12 days ago.

I was told that, as well as removing all metal work, some bone would need to be removed - if it was found to be infected - and that the space would be filled with anti biotic pellets following a general anti biotic wash out of the soft tissue. Any infected soft tissue would also be removed.

The surgeon concerned reported that the operation had been "interesting". His senior registrar however showed, through his concerned features whenever I saw him, that "horrific" might have been a more accurate description. When I asked him how much soft tissue had been removed he replied "a significant amount - about a cereal bowl full" The consultant however played this down as "not very much". Now some of this difference in opinion might be down to the different degrees of experience of such operations but I think the Senior Registrar's concern is the one that will guide me in the next few months.

Originally I was expected to partially weight bear through my right leg after a few days and then gradually to progress to being able to weight bear without any concern. In the event I have been told that I must only partially weight bear for the next 12 weeks at least. I can contemplate "touching my right foot down as I walk - first with a zimmer frame and then with luck with elbow crutches - but nothing more than the lightest touch.

When I saw the first X-ray of the operation I was enlightened as to the level of concern.

In the event I have about 4 inches left of what I estimate to have been about a 16 inch long femur. Some of this had been removed during the 2 previous operations on my right hip but I think I have had a further foot of bone removed because it was deemed to have been infected!

In its place is a load of cement fashioned into something looking like a femur with a rounded knob at the end. Through the middle of this runs a rod to provide some support. I'm not yet sure if this is made of metal or some inert material. Given that the original metal was thought to have attracted infection I do hope it is not metallic.

The cement is impregnated with gentomycin which I understand will be released slowly over the next few weeks - so perhaps a case of more being better. Unfortunately this length of cement is not as flexible as a similar length of bone. It is therefore more likely to break under strain - definitely a case of less being better!

So think of this blog as an X rated horror suspense story. Whether it turns out to be a thriller as well - only time will tell. I will however try my best to make it "interesting"!