Flagging this years Artists’ Open Studios Event first!

Come and meet me this year at the Kingston Artists’ Open Studios!
KAOS OPEN STUDIOS 10th/11th and 17th/18th June 2017 11 – 5pm at Studio KAOS 2 , 14 Liverpool Road Kingston KT2 7SZ
It’s no time at all! So pop this in your diary and make yourself a nice day out. Walk by the river in Kingston, Stroll in the park, walk along the studio trail, pop into a little cafe! Meet KAOS (we are a lovely bunch of creatives) and take a look at what we love investing ourselves into! And if you are someone who does collect art, be it just a few pieces or many, make a good choice and visit the artists direct…You can talk with us and find out more about the work in a way that you wouldn’t be able to do in a different context.
There are 90 artists showing work in total. I am showing at KAOS 2, along with 8 other artists:
Sandra Beccarelli, Cressida Borrett, Lizzie Brewer, Caroline Calascione, Ikuko Danby, Bali Edwards, Yuka Maeda, and Anna Tikhomirova!

See you there!

http://www.kingstonartistsopenstudios.co.uk/

And now that’s flagged up, for the time being, what have I been able to do in the last few months painting wise?  Not very much!  But I have been writing!

Introduction to “The Very Patient Knee Replacement Story” by Jenny Meehan – A Patient’s TKR Account

In March 2017 I had knee replacement surgery on my right knee. Painting involves a lot of walking and standing, so rendered slightly out of action for a while, I took up my pen, and applied myself to some writing.

Writing has been part of my work for a long time, though mostly being used for my artist’s journal, writing statements to accompany art works, and a little bit of poetry. Writing “The Very Patient Knee Replacement Story” kept me focused over a challenging time, and is a very long patient’s account of knee replacement surgery, or TKR (total knee replacement) as it is often termed.

Though it is not finished yet,  I am posting it here in  “Jenny Meehan Contemporary Artist’s Journal – The Artist’s Meandering Discourses” for the time being.  It is on a separate page to this, the main part of the blog.  Look around, and hopefully, if I have worked out how to do it, you will find a link to click on! The writing is finished,  apart from the weekly updates, which I will put in later. There are two versions, the full Very Patient Knee Replacement Story by Jenny Meehan and the abridged Very Patient Knee Replacement Story by Jenny Meehan.  So take your pick.

Link to abridged version here: https://jennymeehan.wordpress.com/abridged-version-of-the-very-patient-knee-replacement-story-by-jenny-meehan/

If you plan to read “The Very Patient Knee Replacement Story” I need to warn you it is VERY long.  The nature of time does change when you are suffering, but I do not want to make you suffer. Instead, you can  scroll.  And bypass any part which you don’t wish to bear with.  “If only life was like that!”, I am thinking.  However, it is often in the harder and more challenging parts of life that we learn and grow the most.  That has been my experience, at least. I am aware that some peoples interest won’t stretch into the depths of the full narrative, so the abridged version may help in that respect.  If you would like more detail on exercises, the psychological and emotional challenges, and practical information useful to someone having  knee replacement surgery, then there is more of that in the full version!

Link to full version of The Very Patient Knee Replacement Story by Jenny Meehan https://jennymeehan.wordpress.com/the-very-patient-knee-replacement-story-by-jenny-meehan/

As not a lot else has been happening apart from my knee replacement extravaganza,  I will include in this post a few little excerpts from “The Very Patient Knee Replacement Story” a bit later on.  At the current time, I am resting, exercising and recovering from what is a major surgery.  In  June this year I am taking part in this years Surrey Artists Open Studios/KAOS Kingston Artists’ Open Studios on  13/14th, 19/20th from 11-5 each day.  I am part of Studio 2, which is at 14 Liverpool Road KT2 7SZ along with 8 other talented artists; Sandra Beccarelli, Cressida Borrett, Lizzie Brewer, Caroline Calascione, Ikuko Danby, Bali Edwards, Yuka Maeda  and Anna Tikhomirova. So at some point in the  next month I need to prepare for that!  Hopefully in a few months I will be more mobile and stronger.

abstract lyrical expressionist british paintings jenny meehan

abstract lyrical expressionist british paintings jenny meehan

“Simple Piece/Crossing Over” painting.  This will be one of the paintings I show at this year’s Kingston Artists’ Open Studios.   Look forward to seeing you there!  Come along and maybe even visit a few of the artist’s studios.  There are over 80 artists taking part this year. Our biggest ever Open Studio event yet!

The Very Patient Knee Replacement Story Extracts

Below I have selected some extracts from “The Very Patient Knee Replacement Story”.

“I think I have realised that what often happens in life, is we are very patient, but not out of choice, rather out of desperation and a hope that something will change.   In some situations, patience is not a virtue.  Sometimes we wait, hoping, wondering, worrying, and being passive, but could be be taking some action ourselves. We can wait too long for a change to happen…and in the process of doing so, cause ourselves and others, a lot of distress.  We sometimes have some control over what happens, even if only a small amount, and we need to take it.  It might be the smallest of actions. A change of mind, or of direction.   A few questions asked.  An attempt at trying some new venture, or seeking any small thing which might help, clarify, or educate.  We might need to question something, and challenge it, rather than accept it.  We might need to raise our expectations both of ourselves and of how others treat us.  We may need to find faith in the process, where we currently harbour only doubt.  Just sitting there and waiting, while sometimes the right thing to do, isn’t always the right thing.

Waiting is not the same as patience.  Sometimes you can be patient, but choose not to wait.”

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“I hope my writing about my experience, and sharing some of the thought processes I went through, will help someone else in some way.  Every person’s situation is different and everyone’s knees are different.  The knee is the largest load bearing joint of the body, and this, for me, is as well as being a simple fact, is also profoundly resonant psychologically.  Because my story is one not just of the problems with this load bearing joint, but the psychological load bearing which my knee has brought me into. The struggle involved in  making a decision to have elective knee replacement surgery, and the need for determination and faith at a time  when I was  already pretty discouraged and distressed.  (Anxious and depressed, at times, in the end!)  And it is a story of patience.  When feeling the pressure.

Patience is power.
Patience is not an absence of action;
rather it is “timing”
it waits on the right time to act,
for the right principles
and in the right way.”
― Fulton J. Sheen

Patience is  born from our inability to control much in our lives, and while we by our very natures, like to be in control, the reality is that while we exert control in some areas, we find ourselves in this vast pool of life, subject to all kinds of forces, influences, situations, people,  and experiences which we do not have any control over at all. Or very little.   Sometimes we did have control of an area of our life, at least in part, but did not see it, either because we were unwilling or unable to. Sometimes we were simply subjects, and didn’t have the power or ability to change things. We are broken, and lack insight at times to recognise what is going on. We misunderstand others and we misunderstand ourselves.  I think often the hardest person to understand in our life is ourselves, and we are also often the hardest person to get along with!”

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My experience of increased pain and disability due to osteoarthritis and the degeneration of my right knee was something which came upon me rather more suddenly than I could ever have imagined, and it changed my life dramatically from the beginning of 2015 onward.  With my knee replacement surgery in March 2017, the journey is not over, but it is significantly changed, as is my life, already, much better.  I am not sure how unusual such a rapid deterioration is, and I do not have the means to judge my own experience in a comparative way, with others,  but I imagine that my previous injury to the knee in 2010, no doubt contributed to the state of the knee being quite as dire as it was.   Well, whatever the whys and wherefores, this is my knee replacement story as it stands (rather nice and straight!) at the moment. I have kept my narrative centred on myself, and not included all the wonderful, lovely people who have helped me through this time.  I prefer to keep confidentiality unless specific permission has been given by people I write about, but one of the fantastically valuable aspects of my experience has been the way I have realised how much God can bless, work, and use people, working in hearts, minds, words and understanding, to knit together, in a healing way, the wounds we all carry and experience in our lives.”

 

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“...But the most important thing for me as a Christian is a recognition of the need to trust in an eternal loving Creator with myself. With ALL of myself.  Including my knee!  This isn’t easy.

This involves trusting other people, and receiving the ministry of love as it comes in its various forms.  Sometimes those forms are clear and obvious, and seem desirable and are much wanted by us.  Sometimes those forms come by way of difficulties, challenges and even hardships. But within all things, the careful eye and heart may be able to detect the hand of God, working diligently away, weaving together the discrete parts of our broken lives and healing all wounds with His (Her) own wounds.  Because, if we choose to believe in a loving, compassionate, and intimately involved Creator, who cares, loves us, and want the VERY BEST FOR US, then we can have faith, hope, and love, and trust that in ALL things God works for our good.  This is what I have learnt. And I  thank Christ for the work of the cross and the love of God, revealed so beautifully, in so many people who have been part of this journey.  A journey only just begun. “

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It is a hugely challenging situation to find oneself  entertaining long term disability in the knowledge that something CAN be done to treat a key component of your problem (knee surface/bio-mechanical factors), but that” something” is  presented to you as needing to be avoided at all costs.  Maybe for an older patient, in their 60’s, the thought of needing to delay knee replacement surgery for five years in order to possibly get away with just one surgical procedure may not seem quite so daunting, and might be worth weighing up say five years of suffering in order to balance it out with a possibly avoided second revision surgery later on.  Just possibly.   But for a 52 year old, the prospect of waiting takes on a rather pointless aspect. Knee replacement surgery, though a major operation, is routine, tried and tested, and effective for the majority of people.  If someone does not want to delay the surgical treatment of their knee joint, as long as they understand that the prospects of further surgery are likely to be part of their experience, then there is no reason why surgical treatment in the form of knee replacement should not be presented to them as positive move in the right direction.  It is not an emblem of final defeat.  Or something negative. It is a wonderful surgery which can give people back their lives.  Even if it does need to be re-done.”

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“I cannot deny I found the psychological and emotional aspect much harder to accept. All the questions and insecurities. I began to wonder if I was seriously expected to accept the changes in my quality of life. Was it seriously realistic to plan my life around my knee to such a degree? Was it right that I should be expected to do this?  Did I have a choice in the matter?  In theory, the answer was yes.  But in practice, was this the same?  Being obese and 52? Did this change my situation? Is the knee replacement procedure really a procedure of “limited clinical value” or is it rather that my life, which could be potentially  transformed by accessing knee replacement surgery, is of limited value?  Because if it mattered, surely knee replacement surgery would be being presented to me in a more positive light? As an option for my problem to positively consider.   No one I spoke with said anything positive about getting a  knee replacement  apart from a few people I know who had had knee replacements or knew someone else who had had one. Later on (or earlier on, depending which way your read this), I include a quote from the 2012 Briggs report. I am asking myself now if the “limited clinical value” idea has a leg to stand on.  Ho Ho!  If it does, I trust, that if unable to stand, it might at least be presented with knee replacement surgery in a positive light.  Actually, second thoughts, let’s not afford it that opportunity, and just cut the blasted thing off! “

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“Physiotherapy after Knee Replacement Surgery

The community physiotherapist came today and is very nice.  She tells me I am doing very well and reassures me with respect to my quadriceps going on strike.  They will come back.  She shows me an exercise where I do little squats.  It is amazingly hard work but feels great because I can feel the inner quadriceps muscle in a very obvious way.  Possibly pain, but feels more like a burn and a strong pull.  To me this, while it is not pleasant, does offer a reminder of the presence of the muscle, so this is quite motivating.   Certainly not agony. (I did take my pain medication a couple of hours before she came).  When I try the seated  I am pleased with the visit.  She checks various movements and gives me lots of useful information and advice.  I am very grateful for this input.  Left to my own devices,  it would be very easy for anxiety to set in, and the encouragement is needed at such a time as this!

Doing stretches (flexion and extension) dotted all over the day.  Really helps to have an ice pack (even a not completely icy ice pack!  The cooling is still helpful) handily.  I stick it on after doing a few stretches here and there.   ICE was one of my main methods of pain management before the knee replacement operation.  After it, ICE application is a constant task!  Every two hours or near enough for a full blast ice pack.  And after that I still use the pack when slightly thawed about 20 minutes later.  It is still cool and effective.  I have plenty, around six, so I can do this no problem.  I do push the knee a little bit, so there is an ache when I bend and extend it. But I only press into it for a very short while, and I don’t push into it more than three of four times, and then, just a bit. Then stick the ice pack on, and ache is gone.  I wouldn’t call it pain exactly. Well, it is really, but I choose not to think of it that way.  It would be pain if it hung around for ages, bothering me and popping up at the most inconvenient times.  That was a pre-operative experience.  Pain is frustrating and tyrannical.  Ache is work, and worth the effort because it will get me somewhere.  There is a slightly stingy pain along the incision, which feels a bit like a zip, but it’s no worse than the sting I had when I cut my hand when washing up.  That kind of stingy scab healing feeling! It’s kind of numb too. Very strange feeling!”

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There is a lot in “The Very Patient Knee Replacement Story” about physiotherapy after TKR (Total Knee Replacement).  This is mainly because for the first few weeks my whole existence gravitates around exercises, resting, and basic self care!

Another extract:

My main concern with the exercises is that I don’t get discouraged and that I continue to do them.  Continuing to do them means that I am careful NOT to wear myself out, and careful to make sure when I do them I do them to the best of my ability.  It means that, though I am a very sociable person, I am restricting my visitors, as I mentioned earlier. Otherwise I will get too  tired.  I can also some of the exercises at the same time as seeing people.  Seated heel slides and sitting in front of my static exercise bike while pedalling are the ones that most lend themselves to conversation without drawing a grimace on my face.

Rather than have distinct exercise sessions of a long duration, I am tending to organise the exercises I do around the usual activities I need to do.  I am also grouping them now into bed (lying down) based exercises, chair based exercises, and standing based exercises.  When I get into the different basic positions, I then have a string of exercises I can do from my location/position/necessary activity.  This works well.  It is piecemeal, but does have a nice informal pattern to it.  Sometimes I just do one exercise.  Sometimes a string of three.  Still working out which ones are best where, and when.  But I think it will come.  I am only doing a few repetitions.  And I have noticed that as I gradually move around more, just every day movements involve me using my operated leg in ways which stretch and challenge its strength.

The one thing I  AM doing religiously is making sure I am alternating  my knee regularly from bent to straight.  Icing and resting it.  Getting up each hour, or near enough.   And now having a short walk in the garden.  The operated leg is still quite swollen around the knee area, and this does make it hard to bend.  I am so pleased with the straightness of it.  I have to put my mind to remembering to work on the bend also.  It often feels very stiff because of the swelling, but does seem a little easier to move than it did last week. At hospital, the physiotherapist’s last words were something like “Make sure you reduce the swelling” and I have that hanging in the air.  Hence the considerable efforts of ice and elevation.  It seems that exercises are pretty much all I have to write about currently. That’s the main focus of life at the present time!

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I felt very despondent today. Fine for most of the day, but very tired.  It was the end of the day, my pain medication was wearing off, and I decided to try to do something very difficult with my operated leg at the moment by trying to lift it up and down off the two pillows I was using to support it while icing.  It was a case of wrong timing, wrong movement (trying to do something which I already feel demoralised with) and bad pain management, as I had forgotten to take my pain medication on time.  This meant that the whole experience has left me feeling low. And slightly anxious, worrying that my quad muscles will not return to action as they used to. As I tried to lift the leg, supporting it with my hand, it was just that little bit too painful and unhappy to tolerate. But still I insisted on doing it ten times.   I have to ask myself why I thought this was a good idea.  What am I trying to do here?

It was because I thought I SHOULD be able to do it, but at this early stage, and not yet having had my physiotherapy follow up appointment, what would I know?  Who says I should?  Why did I insist on giving myself a hard time with it at a time which is the least optimal time of day for me?  Why did I try and do it at all?  It is far out of the range of things which I can do “just a little bit”.   If I want to do exercises or movements I find more challenging, I should choose something that I can do to a small extent, and work on that.  And I have to bear in mind what my leg has been through.  It is so tempting to think that things should be easier and happen more quickly.  But it will take a long time for my leg to get back to full working order.  And I have completely discounted all the things it can do, and am just focusing on what it cannot.

I would be better off simply sticking with lots of quads sets and not worrying about things.  There is also a “Discharge Line” which I can phone with concerns.  I will see how things go, but I can phone this if need be.  That is what it is there for…patients with concerns.  This is NOT something I need to deal with alone.  I will wait for a week or so, but will call in a week or so if no improvement at all, providing  I have not been contacted by the community physiotherapy service.

Sorry leg.  Sorry knee.   I will try and be nicer to you. I will give you some things you can do well tomorrow, with a little bit of challenge, but not too much.  I need to keep myself positive, and in order to do that, at what is a difficult time for my whole being, I would be wiser to take things a little more gently.  As long as I keep the range of motion in order, I am sure the strength will come back in time.  My whole body is very tired and recovering.  My quad muscles were struggling BEFORE the surgery. I must not forget that.  I really must be patient.  And everyone is different.  Just because the exercises are in the booklet, it doesn’t mean I should be able to do all of them at this stage.  It is VERY early days.  I think tomorrow I need to resolve to give myself a bit of a “day off” apart from a few very gentle exercises.  Because I am quite fragile, and it is amazing after surgery, how what would have been a little discouragement, turns into something quite heavy, which can make you despondent.  And how easy it is to start becoming anxious when tired and despondent.

Really important to keep on top of the pain.

Really important to rest and not stretch myself too much.

Really important to leave any concerns about rehabilitation to the professionals.

Really important to be patient, patient, patient.  And if any hint of frustration, more patient!

Tomorrow I will have a bit more of a focus on the walking, as I am VERY good at that, and STAND up nice and tall!!!!! With my VERY straight operated leg.  I will have a celebration of LEG STRAIGHTNESS DAY.

And also work on flexion a bit too.

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Alongside the focus on pain management and exercises, I include other considerations which were part of my experience.  For example, various subheadings include:

Having Someone to Look After you After Knee Replacement Surgery

Infection

Sleeping after Knee Replacement Surgery

Walking in the Early Days after knee replacement Surgery

RICE (Rest, Ice, Compression, Elevation)

The Pesky Oxford Knee Score and the Younger Patient

The Pesky Oxford Knee Score and the Younger Patient deserves a quote:

“I don’t like the Oxford Knee Score. That did not serve my interests well at all.  Full stop. Not when used as a tool to assess  supple “young” patients suffering from osteoarthritis with a high pain threshold who cannot walk very far or straighten their leg properly. Or patients with a positive outlook who tend to underplay their ever increasing restricted quality of life. (Anyone in mind, Jenny?) Oxford Knee Score problems I can think of:  The score time range is “in the last month”.  Four weeks is no time at all! Especially not with knee osteoarthritis, the symptoms of which vary immensely depending on  your activity levels.   And the Oxford Knee Score relies on the patient possessing an accurate picture of their situation.  Which they may not have. When someone becomes slowly and gradually disabled and their pain increases and their mobility decreases, all kind of coping mechanisms come into play, and one of those is DENIAL.  So when filling out an Oxford Knee Score, it is easy for a patient to put something which is more optimistic than their experience really is. Because you want to believe it!  Looking back I can see that I did that.  The Oxford Knee Score is too limited in scope to be used to make important decisions about if someone merits consideration for surgery or not.

Clinicians themselves wouldn’t just take it as it is and use it in an arbitrary way. Well, some might, others not.  They use their professional judgement and experience. But time is short, and the Oxford Knee Score  is quick and easy to use. But systems designed to save money would use it in an arbitrary way. Because then the more subtle aspects of patient care and accurate assessment of an individual situation can easily fall by the wayside.  There are many confines and restriction on what is possible in life.  That’s just the nature of things. We all live within them.  I think my experience has been one which has brought much closer to me the value of the NHS, and given me intimate personal experience of how much it does matter that it is given the funding that it needs.

I am not at all alone in my experience of feeling that I was expected to carry on longer than I felt able to in managing my situation without surgical intervention. The desperation I felt before being placed on a surgeon’s list is something I will never be able to accurately put into words.  I am thankful for the experience now, but  this is because I can look back on it and glean some wisdom and knowledge from it.  It has certainly made me more patient as a person. Patient with myself, with others, and with my knee!   I can feel thankful because I have received the treatment I needed which I was not able to access through any other means.  And when all is said and done, I think the surgical intervention was timely enough. It was just in time, for me.  When the ball got rolling, it rolled very quickly, which was a huge relief.  The hard bit was getting it started.   When you look back, and see the hardship, it does not seem quite so hard from the present vantage point, at least.  I lost out on a few opportunities and found the experience challenging and difficult.  In the light of potentially being able to walk for two hours, (though this is still a very long way away), it seems worth going through anything to open up the possibility of long term improvement. “

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I also  consider my experience bearing in mind the factors of not only being “young” in knee replacement surgery terms but also of being  obese.  Which is a nasty word, but unfortunately, even though I am slimmer than I have ever been, does still apply to me even at this present time, with my BMI being just over 30!

“I think, in reflection of my own experience,  I feared that being obese was effectively going to mean that I could not access knee replacement surgery.  I had realised that my excess body fat was basically stealing away my mobility several years back, and had already sought to try and increase my activity levels which, ironically, then highlighted the problems with my joints.  I did have a kind of personal revelation that I didn’t want to be restricted from fuller mobility by my physical body, and a diagnosis of osteoarthritis in  2015 was helpful in this respect.  A definite reality check.   You overload your joints with too much to  carry and this will make things worse.  So relieve the pressure and loose some weight.  That was an important place of realisation, and logical and sensible in every way.  That is when my desire to work on losing weight started.  I did my research, and had a fairly full appreciation of the clinical reasons why being overweight and having knee replacement surgery, both during surgery and with respect to the longer term outcomes, is something that does need to be addressed by a patient.  It could, quite unsurprisingly be argued, that in my case, the fear and anxiety were put to good use.  I really could not bear the thought of not having my knee treated surgically because every fibre of my being was telling me that this was the treatment I both wanted and needed.  My anxiety  was something which helped to cement my own application to weight loss, and helped to focus me in that direction.  However, I am very aware that for another person, this fear and anxiety could plummet them into despair, and they may not have the resilience and persistence that I had.

People need a lot of support to lose weight.  I certainly had a lot.  Not everyone has that support available.  For some people, having the surgery and understanding the need to look after their “new knee”could be something, (if properly educated and then supported after their surgery) that could potentially motivate them into continued weight loss and greater activity levels.  Some people will simply not be able to lose sufficient weight before having knee replacement surgery.  It would not be realistic for them.  Their pain and disability will stand against them just that little bit too much for them to make progress.   Even with my weight loss, which I am very pleased with, my symptoms did not improve.  I swam three times a week, accessed various public health programmes, and brought myself a stationary bike.  These options may not be there for many people.  I am still technically (just) in the obese category.  But I am mighty sure that it is going to be much easier for me to continue the weight loss I have started, once I can walk around for a few hours at a time!” 

Along with the rather more questionable subtitles, for example “The biggest poo I have ever done in my life”  and quite possibly too much emphasis on urination, there are some more refined matters I cover, for example:

 Making Life More Pleasurable When You Have Pain After A Knee Replacement Operation

Which includes thoughts on:

Mindfulness

Here is some text from that section:

Before Knee Replacement: (Often when doing yoga and praying)  I don’t know what professionals would recommend, but I would try breathing deeply in and out with full lung breaths for generally relaxing my body, which tends to get very tense when there is pain anywhere in it. I would also, when doing Yoga, send the breath into the area of pain and accept it, which isn’t easy. I didn’t force my body to do anything that was too painful, but there is a point at which the pain can be gently worked through,  or at least born with. If there is just some pain, but not too much.  Dwelling with the pain, as long as not too much, was quite confidence boosting because I came to the understanding that I could live with it.  And also, I was often surprised how, when not allowing the pain to stop me from moving, I was able to do, over time, much more than I expected. Well, certainly where Yoga was concerned.  Not the case with walking around sadly.  Or the periods of continuous pain. Pain at night is also harder to manage than during the day. However, learning to manage at least some of this pain in this way was helpful to me.  The more methods one has of managing pain the better.  I also used distraction techniques and redirecting my mind, as well as giving attention to the knee when it was hurting a lot.

Post knee replacement I am finding, (at the present time, at least), that I am using the same techniques during those times when the effect of the medication starts to wear off, and yet it is not quite time for the next dose.  It is also  handy  for the times when I am exercising and feeling pain, but it is at a pretty low level (mild) and I sense that it is not quite yet time to stop the exercise because of it.  I have a handy app called ” “Just Relax” which was free from the internet and it has different pieces of very relaxing and repetitive music on it.   The inviting titles on offer are: “artistic”, “autumn forest” “convent” “fresh morning” “heaven” “inspiration” “meditation” “om chanting”.

I am also meditating on pieces of scripture. I did this prior to surgery, in particular Psalm 112 verse 7 (because I am somewhat prone to “catastrophic thinking!”)
7 They will have no fear of bad news;
their hearts are steadfast, trusting in the Lord.

My lovely husband read this out to me and it was very helpful.

Post surgery my favourites are:

Acts 17:28 New International Version (NIV)

28 ‘For in him we live and move and have our being.’[a] As some of your own poets have said, ‘We are his offspring.’[b]

Footnotes:

Acts 17:28 From the Cretan philosopher Epimenides
Acts 17:28 From the Cilician Stoic philosopher Aratus

Psalm 147 v 3

He heals the brokenhearted and bandages their wounds.

(I chose this one as I meditated on the vocation of nursing and how divine love may be expressed towards us through the care and attention of people who choose to serve in this way)

1 Peter 5 v 7

Cast all your anxiety on him because he cares for you.” 

I also write about how I use:

Movement

Tens Machine

Massage

along with the

Pharmacological Management of Pain

I write quite a lot about how I am managing the pain in different ways.  The pain was not as bad as I expected it to be, going on some of the things I had read before my TKR.  But it was so well managed in hospital and I felt confident I could manage it at home too, which I did. I write endlessly about exercising, but please understand, doing exercises when you have had major surgery on your knee is a major achievement!

Next, a somewhat longer quote from the time in hospital.  I think I will include a lot of the text at this point.  It was such a great experience!  Also, to read the whole “The Very Patient Knee Replacement Story” is quite a marathon.  The time as hospital is “the main event”.  So I will quote all of the text from my patient knee replacement journey I think, starting with the day I leave the hospital.  I won’t put it in italics.

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Day four – (Saturday – Post knee replacement surgery) The time between walking out of the hospital and walking in the front door…Plus the rest of the first day at home!

It is a very bright and very sunny day! Walking away from  the hospital on my crutches today, was one of the most wonderful things that I have done for ages. I could actually feel the positive difference in the way I was walking on day two after the operation!  And felt the difference in the leg, even when not walking, in  the post-anesthesia care unit.  Obviously a lot of pain killers came into play, and still are.  But it is the way that my walking has changed which has affected the whole way I am holding my body. It’s an amazing experience!   I can straighten my leg properly and it has changed the way I move forwards… I thought this would be the case, but actually experiencing it is fantastic!  It feels better and easier to walk (obviously with crutches!) than it has for TWO years! If I could fly I wouldn’t…it is better to walk! THANK YOU! everyone who has helped me,  for getting me started on my journey. Now a lot of rehabilitation, but walking in the right direction now! At last!

I worked very hard on my extension, even on day one, by pushing my knee back into the bed.  And I have carried on, of course, with increasing the flexion.  I really did not expect it to be so good so early.  On discharge my extension was 0 and my flexion 85.  At pre admission my flexion was 110 and extension 10.  Amazing!  I now need to continue with all the exercises I have been given and develop strength in all the necessary parts! It is a full time job but worth investing in! It was amazing to see the post op X-ray.  It is heaven to look at the now very good joint space.  Which is nice and even! Now the exercises are likely to be more beneficial to me walking.   Completely different from the the X-ray in November 2016, with the tiny gap between bones on the medial side.  That was dramatic too, but in the wrong way.

It is easy to get slightly over excited and do too much and so I am doing my best to pace myself and make sure there is also plenty of resting going on.  The physiotherapist I saw on before leaving today reminded me to reduce the swelling as much as possible and ICE… so the freezer is ready and rearing to go!   I have sat down and worked out when I plan to take the various medications I am on, and am considering saving the morphine for “special occasions” if desperate.  I feel much better about using the Co-Dydramol and  Ibuprofen without the morphine if possible.  I did have a couple of small doses of morphine today, but though the very drugged feeling is undeniably VERY pleasant, it seems better to take a  path of avoiding it and managing pain in other ways, as I have been used to doing so often prior to the knee replacement operation.

It certainly pays to prepare.  Very handy to come back to things like there being a stair rail and an electrical socket by the bed for charging appliances like computers and phones.  All these little things count a great deal.  My husband is being wonderful and it is great to be in the home environment.  In the evening I tried out things like using the stairs and even tried out my exercise bike.  I wasn’t expecting that on my return home.  I sat a chair directly in front of it and did several rotations of the pedals all the way  around!  Did about 20!  I am also surprised with how strong the leg feels.  I did make sure my legs were in pretty good shape before surgery, but it is clear that the surgeon has done a most excellent job, because, among other things,  knee doesn’t feel like it has been very disturbed.   I am sure if I had watched the operation I would have seen the sawing, drilling and hacking, (!) and known other wise, but quite clearly I have been in the hands of a very skilled and artful surgeon with a great team.  The knee is pretty swollen now, but it was quite shocking to me how LITTLE it was swollen on day one of the surgery.  It looked like no one had touched it! It swelled up rather a lot when I put the TEDS on it, and also I wonder if the “inner range quads” exercise (which has always been an exceptionally hard one for me anyway) may just have been pushing things a little bit too far just right at this stage.

I have adjusted the timing on my medications to fit in more with the home timetable, but the Fragmin has to be at the same time, which handily, is six pm.  I did buy myself some topical anaesthetic which does make the injection painless.  I am sure I could brave it but when you are managing pain as part of the rehab it is rather refreshing to have something so simply and charmingly rendered painless!  I am currently, as I write this, plugged into the TENS machine and this is great at dealing with the pain I now have which is rather refreshingly surgical in nature but still needs a bit of attention.   I would like to keep the night time as well managed as possible and so am having the medication which used to happen at 10pm a bit later at 11pm.  Gosh, it reminds me of when you have a baby and need to think about the feeds you give to try and get a good night’s sleep!   The knee hurts right now because it is bent to 90 degrees or near enough. I have  not checked it, I’m just going by appearance.  When I finish writing this I will go and ICE it, elevate it, and give it a rest.   I think I will try and keep any morphine consumption, if it happens, for the night time.  Because everything often gets more desperate at night and can seem worse.

My final sentence has to be, that without good form, good function is very limited. Now I have some opportunity for walking around as I once used to.  I will need to work very hard.  But at least I will get somewhere.

 

Day four in hospital – ( Saturday – Post knee replacement surgery)

I will do two entries for this day.  One for the time in hospital and one for the time at home.  It is a special day for me, and the beginning of my new adventures in life with a newly resurfaced knee joint.  I am hopeful all will continue to go well.  There could be complications later on, but let’s not expect that.  I will do all in my power to help things work out well. It’s a step of faith.

This is my paper diary entry for the day:

10am  I didn’t have any morphine yesterday but am thinking I might have some today possibly.  I would prefer to try seeing if elevating and icing is enough but decide to wait and see how the day pans out as it may be that if I am a little more active the pain levels may increase.. They are very good at managing pain and I am regularly asked if my pain levels are 1, 2, or 3.  Most of the time it has been moderate which I am used to anyway.  To be honest the pain is, while certainly part of the package, much better than the pain experience pre-operatively because  pre-operatively you know that the pain is going to get progressively worse while this pain experience will get progressively better.  Even if you still had a little bit of pain, it would still be better than living in expectation of a worsening state of knee joint and steady decline, with expectation of further decreased mobility and increased pain.  It may be I think that I could go home today.  My operation was Wednesday and now it is Saturday which would make it four days.  My day of fainting twice was the day when I felt the most “out of it”.  I am pleased that I experimented before the operation how to get my leg up in a raised position using pillows and with the hospital bed it is even easier.  Shame that I cannot take the hospital bed back home with me!   I have found that after the initial ice pack application it is very pleasant to take the ice packs out of the sleeve and use them to gentle massage the knee upwards towards the heart.  The “Hydration Station” is naturally the highlight of the day as it brings a lovely cup of tea.   The routine of the hospital is something I find quite pleasant and the staff changeover times are the busiest. It is actually very nice to wave bye bye to one lot of smiling people and welcome another, and they really are all very smiley which is important and does make a very big difference.  

1pm It is one o’clock on Saturday and I will be going home at some point later on today. WOW!  Amazing!  I am walking on crutches  to the freezer in the Physiotherapy room to collect my ice packs every 2 to 3 hours.   It’s a great mixture of a bit of exercise, a bit of rest, and more exercise and more rest. The rest is very important – I can feel my heart pumping away and the blood pulsing in my neck.  I do feel quite dizzy and get tired pretty quickly.  It certainly is important to pace oneself.  Even as I sit here writing I feel extremely tired.  I did also have a small dose of morphine today which does help push me through the time when the pain gets too close to the edge, however it is basically under control and feeling  it is under control is FANTASTIC! 

The Physiotherapist said yesterday that the surgeon said it was “Definitely worth doing”.

 

“Definitely worth doing.” This helps a lot, because my gut instinct was correct.  My Asda nightdress was a good choice for the hospital stay! On the front it has:   “MRS” noun/miss-us/def: always right”.  It’s good to know once the surgeon got in there, that my knee was clearly in need of it’s crown! I wish I could see a photo of it.  Or even watch the whole operation.

My time at hospital finished at around 3pm.  My husband picks me up, and I walk out of the building in crutches. Annoyingly I have forgotten to get him to take a photograph of this significant moment!

I can tell you this…I have more potential walking out of a hospital with crutches than I did walking in without them.

Because, though the rehabilitation and recovery process for knee replacement is a long and hard one, compared to years of pain and disability, even one or two years to get things sorted is relatively short.

Hey! Now I am in good form!  My knee joint is in good form!

Now all this exercise has a chance of paying off!

See the next post for the rest of the day!

 

Day three in hospital – (Friday – Post knee replacement surgery)

The paper diary entry for day three is, as follows;

Mmmm, yes, realising that the initial day one was a bit of a high.  At first I just had a bandage on and not the TED. When the bandage came off ( I wrote this referring to the day before) and the TED went on and I think various drugs are wearing off and all of a sudden the knee is huge.  I was so impressed with how little it was swollen before.  Now the swelling makes it very tight and stiff.  Still moving it as much as possible.  The surgeon popped in to see how I was getting on yesterday and just at the exact time I fainted.  It was lovely to see him though, even in the middle of a faint and he looked pleased with how things were. – regarding food.  I started off ravenous but now – bearing in mind I haven’t been to the loo for a while the appetite has gone a bit.  The physios I saw yesterday on day two are lovely and it’s great to have their support.   I decline the morphine I was offered last night.  I am wondering if that may not have helped with the fainting though it might not be related.  I asked for some ice and I elevated my knee several times last night which is a better way of managing the situation rather than just using pain relief alone, The pain I feel at the moment is surgical pain which at the present time at least is fine. I am still taking Co-dydramol  and Ibuprofen and this seems to be enough. I would really like to see the xray at some point. My bed is in a great place right by the window.  I have a fan and a breeze comes in through the window – I feel a lot more comfortable with it being so cool and breezy.  I put some relaxing music on my tablet when I iced my knee last night and that was very good for relaxation.  Did a poo today – Well done! Really lost all dignity now!  And what is more, not only the commode but the actual toilet.  Walking to another room has been the most exciting thing that has happened to me in a long time.  Physio told me to ice every two hours for 20 minutes at a time.  4.30pm  Feel so much better now I have got some  ice packs and plenty of them.” 

Other features of the day which I remember looking back:

The awful moment I realised that my night dress was rather short.  And was quite possible exposing a very small amount of my bum when walking.  Not much.  But even a little is far too much.  I only needed to lean forward a tiny little bit!  (Which you do with a walker!)  Oh dear!   I put my shorts on when I realised!  Possible now I no longer needed the beloved bed pan! Rather awkwardly I realised this when the patient opposite had visitors. On my return journey from the toilet.  Having already exposed my rear end on the outward journey!  Oh well, it could have been worse.  I would not to have liked to be a visitor when I used the commode.  There are some things you just don’t have control of in life.  Your response to laxatives is one of them. Thankfully my commode experience does not happen during visiting hours.  Now I understand why someone might want a private room.  Never occurred to me before!

Another key moment:

The wonderfully fit moment of putting on my bra. Suddenly felt very active! I think earlier on I mentioned the importance of knickers.  Bras are also very important for a woman.  I thought pretty carefully about this beforehand, and went for an active wear sports bra.  Yes, I know I won’t be jumping up and down on the bed quite yet, but they are very comfortable and easy to leave on all the time.  No digging in or itching or catching.  And, as always, the psychological aspect is important.  I FEEL active in my sports bra!  I knew I would feel pretty knackered and I was wondering if this choice of bra would make me feel more active.

Ho Ho!  I know I am pushing it a bit there, but even a tiny weeny little sporty inkling of a feeling can go a long way when you are bedridden.  I am not sure in retrospect, if the sports bra did make any difference to efforts at moving my leg, but the top half of me did feel more sporty as a result.

 

I found a very funny video on You Tube in the last few days, which did crease me up.  All about “active wear”!

 

My version:

Lying in the hospital in my active wear!

Walking on the walker in my active wear!

Got a knee replacement in my active wear

Yeah!  Active wear!

Getting there!

I’ll  walk a mile in my active wear! 

Give me six months in my active wear!

With a knee replacement,

and a bra

Yeah! 

I’ll just keep on walking 

in my active wear!

 

And there was also the heavenly moment of having a shower.  This was amazing!  Wanted to stay there all day.

And the food is great.  The mashed potato is lovely.  The spotted dick is delicious.

I don’t particularly want to go home.  Happy to stay a few more days!  It’s great!

 

Day two in hospital – (Thursday – Post knee replacement surgery)

It appears my main preoccupations in hospital are the food and cups of tea, which are very good, and what comes out “the other end”. Let me apologise for this in advance.  All I can say is that at times like these, we are reduced to our most basic level, as rendered dependent on others, with very little else to occupy our minds.

The paper diary entry for day two is, as follows:

“I have done a lot of wee – getting quite good at using a bed pan – I didn’t sleep that much in the night but dozed on and off while doing some of my exercises -foot pumps and bottom clenches.  I am so pleased with the way my drip has been put in.  It is very comfortable.  The unfortunate lady across from me is very constipated and it all sounds very awful.  I decide that I will take a senna tablet which I have in my bag as soon as I get up in the morning even though it says you take them at the end of the day.  I do remember from my Caesarean Section that the drugs can make you constipated – I might just restrain myself with the food so that my bowels don’t have too much work to do – at least I have been to the loo – I did eat quite a lot yesterday – I can feel my stomach moving – Neil did a great thing yesterday and brought me a pack of various cut fruit; melon, strawberry and mango.  Surprised I have not seen the physiotherapist yet – really keen to be able to go to the loo by myself, for pretty obvious reasons. “

Then the physiotherapists do come! Just after I have written the above!

Whoops! The physiotherapists do come and when I try to use the walker I faint.  Apparently this is quite common – Still taking the morphine and other drugs. Bit disappointed I cannot get up to go to the loo myself” 

This is all I write for my second day. I faint on both occasions when I attempt to use the walker.  My blood pressure is low. I do feel pretty washed out. Both fainting occasions are kind of mixed up in my mind, as I look back and I am not sure exactly what happened when.  So the bits I remember here may not be in the right order!

When the surgeon kindly comes to see how I am doing, it is at exactly the time that the physiotherapists are with me, and I have just tried to stand up using the walker. Then  I start to feel dizzy and begin to faint! Again!  And the “Hydration Station” lady is there, offering me something sweet to eat! It is rather enticing, with some unusual colours in it…Very odd.  Green and orange. It is valiant attempt to keep me in the land of the living.  I say to the surgeon “I don’t think being sick on you is a very nice way to thank you for what you have done”   I also say “Thank you so much I am very grateful”. But I don’t quite finish the sentence because as it tails off,  I have fainted!  When I come round I have a little oxygen mask on my face for a bit.  I gradually perk up. The other two patients in the section of the ward I am in look worried.  I think they are more worried than I am.

I don’t feel great.  But, I do feel grateful.

I can also remember the physiotherapist telling me at one point that the surgeon said the operation was “Definitely worth doing”

Yes, it definitely was.

I can feel the difference already, and I cannot even walk yet.  But I can stand up straight! My body knows things are better, even with the trauma of the surgery to contend with. I cannot quite believe how obvious the difference is. My legs feel the same length for the first time in ages. It’s a great feeling!

I am a sensitive soul.  Horrified by the experience of having my walking ability so dramatically reduced prior to surgery.  Not quite able to believe that from walking for three hours non stop at the beginning of 2015, I was reduced, for large periods of the last two years, to a walking duration of between ten and thirty minutes. Latterly, just ten minutes of what I would term “reliable” walking time, meant that I begun to need to shut down vast areas of my life. Yoga and swimming kept me going activity wise. But this is not practical in terms of mobility. And certainly not possible to be a busy household manager, artist, counsellor and teacher with such restrictions.  Even my standing time each day steadily reduced.  That was quite devastating, as I need to stand to paint.

So, “Definitely worth doing” it was. Even without seeing inside the joint, which I would love to see, there isn’t a shadow of doubt.

Thinking about walking now, come to think of it,  I cannot remember if I did any walking on this second day.

I guess I must have later on in the day.  I did feel pretty dizzy and not too good.

But inside, I am elated, and over the moon.

Sorry about the muddle of tenses!

I am still over the moon as I write this, retrospectively!

 

The time between coming round and the rest of the time in hospital.  Which is a long time, even though not that long. Or is it? I am not sure, as I am too drugged up and “out of it”!

Rather pleasant as waking up goes.  I am sure that Monday mornings seem a lot worse sometimes.  I am in PACU and a very lovely nurse is making sure I am OK.  The staff are so caring and lovely, and I feel very well looked after. I have some air tubes in my nose which is rather nice having fresh air streaming right where you want it the most.  I feel quite out of it and the lower part of my body is numb but the nurse explains what is happening very clearly and explains the different reasons for why I am feeling the way I am.  This is very helpful and I feel very relaxed indeed.  After quite literally lying around for a while, I begin to feel quite perky and even have some brown toast and marmalade about 3pm.  Amazing!  Nice tea too.   I think the operation took around an hour and a half but I did not check exactly.  Just lying there knowing it is all done is fantastic.   It is all very restful and quiet, and resolved.  I have had my surgery.  I wanted knee replacement surgery and I got what I wanted.

But I got more than that.  I was treated in a wonderful place by brilliant people who showed dedication to their vocation in life and did their work most excellently.  This is worth a huge amount, and for me as a patient, is a very positive experience in itself, because it is a wonderful feeling to be well cared for.  And this in itself can make the whole recovery process a million times more successful, I am sure.  Because the way you feel about things affects how you feel about yourself and how you feel about yourself makes a big difference to how you treat yourself.  You are kinder, more patient, and more caring, if those around you are also kind, patient and caring towards you.  It is just easier for your body to respond positively to an experience if the positive input is there.  I saw so many smiling faces I couldn’t quite believe it.  And it was FUN to ask the porter to drive the trolley just that little bit faster, and maybe do a few swerves through the corridors.  Unfortunately he did not oblige, and it was not a patch on Chessington World of Adventures.  This is my only complaint about the experience.  The trolley ride, which I thought would be a highlight, was most disappointing!  I was hoping for a little bit of screaming!

I did write a few small entries in my diary while I was in hospital.  I can just about read it!  This is what I wrote on this day:

“I am in PACU and it is a dream – not quite sure how long it will go on for because the pleasantness is lots to do with the pain relief I am sure – So doing foot pumps and buttock clenches – Everyone has been lovely – My leg doesn’t look nearly as swollen as it did when I injured it in 2010.

4.pm Just done one litre of wee – very pleased with myself- pain is making a gentle entry – at 3.30pm I took 2x Co-dyramol plus Ibuprofen.  It is very peaceful and restful here.  I have made a few texts and Neil my husband phoned – I am glad I did not have a catheter.  Looking back on when I went to the theatre it all feels very relaxed – they sedated me very gently and I felt like a baby.  The surgeon popped in PACU and told me it had gone very well and definitely needed doing as the bone was very worn which is quite helpful to know because X-rays and symptoms don’t tell the whole story and for the surgeon to say that is a good piece of information to have.

(slowly and gradually more  feeling returns to the leg)

 I can actually straighten my leg better than I could before and I can feel the difference already which is encouraging – It is also surprising how natural my leg feels – it feels quite strong – I wasn’t expecting that. It doesn’t look that swollen though admittedly it is all covered in bandages!  All the staff here are lovely and all kind, caring and contented. I have felt my temperature rise a few times but feel fine.  The anaesthetist was amazing at putting the drip in – I told him that a wasp would cause more distress. “

The amusing thing about what I wrote here was, I completely forgot the bit about the surgeon coming in.  It was only when I looked in my paper diary when I got home and read it that I remembered that it had happened.  That kind of shows you how “out of it”  I was!

I then continue:

” 17.00  I am now in …….ward.   I can smell the dinner cooking and I had some tea and toast at around 2pm and I am feeling quite hungry. “

That is it for that day! My further account which though I wrote it when I was home, I have kept in the present tense:

When I get to the ward I find I have a lovely bed right next to the window.  It is fresh and breezy which is very helpful.  My nurse is fantastic, and rather handsome, which always helps.  He is surprised that I have already had something to eat, and I get an unexpected dinner which is very tasty. The rest of the day involves lots of people with very smiling faces being very nice to me.  I was slightly worried about the possibility of death,  ( a very small risk, but there none the less) and wonder if I have died and gone to heaven, (I jest).  So it is rather a bonus to find myself in the land of the living, but having a rather pleasant time.

Things do take a downward term when introduced to weeing in the bed pan.   It takes considerable nursing skill to manoeuvre mine as I am “weeing for England”.   I have to agree.  Having large fibroids (I have three, one the size of a small melon at one point)  does press against the bladder, which kind of contributes to the need to urinate as well.  I am drinking lots of water because I am VERY  thirsty. I am very glad I do not have a catheter, very pleased about that indeed.  Worth enduring the bed pan and a rather wet bottom for the freedom to do something independently.  Well, erm, a little bit independently.  However little, that little bit is worth a lot when you cannot do anything at all.  This is quite a humbling experience.   Someone collecting your bedpan for you has replaced Jesus washing the disciples feet for me in my imagination.  It has now become Jesus emptying your bedpan.  Makes washing feet look slightly upgraded in the humility stakes, though it had its context too, which I don’t fully appreciate, no doubt.

The time between the journey to hospital and lying on the trolley.

I want my husband to take a photograph of me on the trolley before being rolled into theatre which he cannot understand.  But here it is!  As you can see, I got slightly confused…Had the lilo for the swimming pool on top of me.   No, it isn’t a lilo, but a rather lovely inflatable blanket which keeps you all warm and cosy.  It really was rather lovely. Indeed, the matter has caught my interest.  I am told the operating theatre is very cold and indeed, every now and then I feel an icy breeze not far away.  My cubical is near to the theatre. How exciting!

I did a bit of research at home, as I found my entry into an unexpected polar region fascinating.  I used to be a Dental Nurse years and years ago, and so do have an underlying interest in medical matters, underneath all the arty business!  So the “Laminar Flow” operating theatre I was about to star in was something to look into, even though I would never actually see it myself, being “out of it”.

Up until the 1950s in the UK (and elsewhere) Surgical instruments were usually “sterilised” in boiling water baths either in the operating room,  or in a room next to it. Powerful extract fans would remove the steam. In doing so, they would create a negative pressure on the operating room and air from nearby areas would flow in to replace it. That air could be contaminated with whatever was colonising/infecting nearby patients.

Then they began to realise something…

Shooter RA et al. Postoperative wound infection. Surg Gynec Obstet 1956; 103: 257-62. Contaminated air was being drawn into a theatre from adjacent areas. When this inward flow was reversed “This was followed by an immediate reduction in the bacteria in the air and by a striking fall in the incidence of wound infections from 37 out of 427 clean operations to 5 out of 532”. There are other, similar papers from that era.

Getting very into things now…

Aerobiologically, the things that generate most airborne contamination in an operating theatre are the staff. The most common unit of contamination (colony forming unit – “cfu”) is a microcolony on an airborne skin scale. That microcolony will contain between 1 and 1,000 bacteria. (Microbial numbers are a critical factor in initiation of infection). A significant purpose of operating theatre ventilation is to prevent airborne bacteria from settling-out in “the wound”.

(and also, obviously, the instruments!)

There is a big difference in the microbiological standards achievable with Laminar flow:

Microbiological standards for working ORs • Conventional – less than 180 colony forming units per cubic metre of air • Laminar flow – less than 10 colony forming units per cubic metre of air.

However, just when you thought everything was simple conflicting evidence appeared, showing that there were increased levels of infection with Laminar flow,  with various theories as to why this was the case.   (Gastmeier/Hooper observations) They then realised that patient body temperature was key, hence me being wrapped up so warm and cosy.  (As an aside, being so warm and cosy is very nice for the patient and makes you feel all warm and snuggly inside!) (Much better than “Ready Brek”!

Maintenance of patient body temperature (“normothermia”): There is an established link between perisurgical hypothermia and infection. The high level flow of air in a laminar flow canopy will reduce patient body temperature far more than the airflows at the same temperature in conventional ventilation.

Another aspect:

There is currently uncertainty about whether laminar flow is better or worse than conventional ventilation 

I imagine this is one of those ongoing debates which is, by nature, ongoing and up for opinions either way.

All the above italics are from:

http://theific.org/wp-content/uploads/2014/10/016.pdf

Anyway, back to the day itself, and away from my interest in the operating theatre:

I am DELIGHTED to find I have charming pair of shortie style pants to wear.  I cannot tell you how pleased I am about this.  I think I mentioned in an earlier post how important it is to have a pair of knickers on.  There you are about to be rolled into the operating theatre, at your most vulnerable point in life (or one of them) ready to meet the surgeon’s knife, WITHOUT A PAIR OF KNICKERS ON!   We have all had dreams of going to school or work and suddenly finding to our dismay we have no pants on.  This is a classic nightmare.  There must be a reason for it being a classic nightmare.  Hence, the joy at meeting an unexpected pair of knickers at this point in my life cannot be stressed enough!  They were quite nice.  Enough of them to be there, but no more.

So here I am, ready to roll.   Let the show begin. I am warm, cosy, and happy in my knickers with a nice warm heated lilo on.  What could be better!  I am doing a crossword with my husband.  The nurse, surgeon and anaesthetist all come and go.  When the surgeon pops in, the only question I can think of is “How long will it take?”  He says it will take  an hour and a half.  I feel strangely peaceful.  I can thank God for  peace at this point,  as I have not been drugged. I am glad to be here, and very grateful for surgery. This is quite clearly a well oiled machine.  But not any sense of lack of human care, I hasten to add.  As the wheels get rolling….Off I goooooooooooooo!

…………………………………………………………………………………………………………………………………………………………………….

The entries in “The Very Patient Knee Replacement Story” up to this point include much merry rambling, including the horror of cutting myself on a glass while washing up, which got me very worried as I feared my surgery might be postponed,  and angst on the journey up to London, again, because of worries about surgery being postponed:

Please, don’t sneeze on me!  I want my surgery!

On the train I am praying that people with colds are not nearby.  Someone sitting  a couple of people along on the long seat on the train emits the most horrendous, chesty, loud and unhealthy sounding cough I think I have ever heard in my life.  Someone just to the right of me, facing me, coughs into her hand, I think.  I dare not look up in case I see the hundreds and thousands of droplets spraying from her mouth head towards me with vicious facial expressions of the kind you get in toilet cleaner adverts,  which want to make you fearful of placing your posterior on a toilet seat without pouring lashings of disinfectant down it.  A man on the opposite seat coughs in a more self contained way.  Gracious, this journey in the rush hour is a dangerous venture.  I think I should be wearing a surgical mask myself.  I MUST NOT GET A COLD!” 

I make the most of the writing opportunity by adding lots of additional entries.  Here is one I wrote on  psychological considerations:

 

Psychological Considerations B+

“I have popped this in as an “extra” rather than a “time between” entry.  I am glad of the time I have waiting for my surgery now, as it is an opportunity to settle my mind and emotions and start to invest mentally in the journey ahead as well as sort out the practical matters.  And so this “Psychological Considerations” is very important.  I have heard how important having a positive mindset is for a good recovery and I can believe that it makes all the difference. That and being able to draw on the support around oneself, and being kind to oneself, and patient.

It’s of interest to me that from the reading I have done on the post operative period of knee replacement surgery, it’s  a rocky road, with many ups and downs.  And the downs can be considerable.  It’s understandable to me that after any surgery the body and mind must have had rather a beating, and the surgery is a trauma to the body, even though it is one for healing intent.  All the energy needed for recovery must leave someone drained and feeling vulnerable.  I do remember after my C-section being extremely drained and sometimes very low in mood.   I think I will need to decide to be very kind and understanding to myself over the post operative period.

It seems that people have days when things are good and they feel positive, and other days when they feel discouraged.  A helpful approach may be for me to keep the long term goal in mind.  For this reason I have chosen to leave deciding whether the operation was worth having or not to ONE YEAR after it.   This might seem a very long time, but based on my experience with my knee so far, a year is not very long at all.  It took SIX months for things to start to feel better after the initial rapid deterioration from August 2015 – February 2016.  That was then short lived, and another rapid decline soon followed on a few weeks later.  A little step up, in the state of the symptoms at the beginning of September 2016 followed, and then another rapid decline.  It seems to be the very nature of knees that they are unpredictable!

I am thinking about all the surrounding tissues and the whole body, and what is involved in walking.  There is a lot of healing that needs to happen after a knee replacement. And a lot of different forces at play in the leg and the whole movement of walking.  While it has been a horrible experience to find my walking ability so badly messed up, I do not expect things suddenly to be problem free.  In some respects I feel I will need to start all over again.  But the good thing is,  I will have some opportunity for long term progress.  That clearly wasn’t an option before, and wasn’t going to happen without surgical treatment.

The realisation that my journey starts all over again, could be discouraging I guess, but I would rather take the experience so far as being a learning one in terms of patience with my knee.  And perseverance.  And persistence.  I needed persistence to get where I am at present for sure.  Psychologically I feel a world away from how I did before being placed on a surgeon’s list.  I was starting to dip into some areas of depression I think, though I would rather term the experience desperation, rather than depression.  The reason for the helplessness and powerlessness I started to feel was that it was a reaction to finding myself in what appeared to be a helpless and powerless situation. The situation of wanting and needing my knee treated surgically, but not having confidence that I could get treated.   The thought of spending years of my life on hold for a knee replacement IS an unbearable thought and is bound to contribute to low mood.  Just add an extra dollop of pain here and there, plus the general experience of chronic pain, and mix up an unpredictable knee which starts to monopolise every area of your life, and the anger and frustration, if turned inwards (which it easily can be) does contribute to depression, This sneaks in upon your life,  initially just as  little waves running towards you, but ones which can gradually start to feel bigger and bigger.

Though depression is rather more like a complete drowning experience, which I why I prefer to term my experience over the last few months as desperation, as it is more accurate!  (I am fortunate to have my own experience of moderate depression and anxiety seven years behind me now.)   Let’s just say that, before being listed for surgery, it was like standing at the edge of the sea, with water up to your knees, and knowing that when that giant wave comes crashing towards you, you cannot run away, or move very easily at all, because your ability to move is severely impaired!  You will get knocked down, and knocked back, by the very things which used to cause a certain amount of excitement and fun.  Because now, rather than leaping up in the air and screaming as you bounce through the water, and laughing as you fall down, you find you cannot get up when you fall,  and the games you used to play seem a lot less fun. You have to choose to make them feel like less fun, because, because of your knee, you cannot play them anymore.  And life becomes smaller.

If having your quality of life diminished by lack of mobility and pain is unavoidable, then you have to adapt.  If it can be treated in some way, it becomes torturous to suffer when you suffer needlessly. I think I realised the insanity of this situation…I did not want put my life on hold, or to delay treatment because I might need revision surgery later on.  I could never quite get out of my mind my years working as a Dental Nurse and I kept imagining the imaginary scenario of a Dental Surgeon telling a patient that they should think about not having their tooth crowned because it might need to be re-done ten or fifteen years later on.  “So, let’s just leave it, wait for it to get worse, and just eat soft food or eat on the other side of your mouth for the next ten years. You can have some pain killers and just make sure you eat more carefully.”  It never happened.    And though a knee replacement is of considerably more magnitude in so many ways compared to a dental crown, the basic principle is the same.  Knee replacement is major surgery, rather than minor.  I realise that, of course. Potentially serious risks and more invasive surgery.  I don’t minimise that. It should be very much wanted and needed.  But if it is… and you want a chance of living your life to the full again. WHY wait?

I think I recognised those little waves of low mood coming towards me, and I knew if I didn’t get my knee treated, those waves would simply get bigger.  I was struggling with accepting my situation because I realised it was fundamentally wrong for me to accept it.  Why should someone in their early 50’s not have knee replacement surgery when it is clinically appropriate and destroying their quality of life?  I really see no sense in signing up to stay in a situation which relentlessly steals away all that matters to me because I cannot walk as I need to.  There is always the possibility of complications and future problems.  There is no guarantee. But there is, at least, the possibility of progress.  A  chance of some lasting improvement, and after the long and hard rehabilitation process, the smallest whiff of being able to walk for even a couple of hours non stop!  Which is a dream at the moment.  So I reckon it is worth it. Many of my friends have commented on how much better, fresher, and happier I look since being listed for surgery, and they are right.  I do feel a lot better.  The huge burden of a sentence of several years of reduced mobility, reduced opportunities, reduced social and career activities and increasing pain has been lifted, in principle at least.  That itself is a huge relief. I am sure some post operative pain will wipe the smile off my face fairly regularly in time.  But at least I have some chance of working things forwards rather than letting my life shrink backwards.”

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There is quite a lot of retrospective narrative in “The Very Patient Knee Replacement Story” , and I do churn my feelings and thoughts from the past about quite a lot. This is possibly not that interesting for most readers, but readers in a similar position to myself, who are thinking about having a TKR (total knee replacement) might find it interesting if they happen to be sorting through in their own thinking similar or related issues.  I won’t include much of the retrospective narrative here, but it is there to be read in the full version.

Another interesting day in my patient journey was the open day:

 The Patient’s Open Day Visit

“It’s an anxious moment for L…  as one of the patients  opens the bowels of his experience at the centre…  Though he speaks highly of his treatment and care, things have been a little bit more complex for this particular elderly patient, with more complications than the average patient, and the group of at least 15 prospective patients all detect a slight state of suspension in the air; wondering what he is going to say next and if it is going to put us all off and lead us screaming in the other direction.

Erm, and there was some mention of problems in the physical bowel area…

I think….Prunes.  Put them on the list.

Thankfully, he has a smile on his face, even though his journey has quite clearly be rather more up and down than most.  He can only sing the praises of those involved in his care, and I reflect that indeed, this is what most of us really want to know.  We have no control of exactly what will happen as we stroll,  sometimes painfully and sometimes limping, into the future, and no one can predict how things will go, even with the reassuring statistics and wonderful reputation, plus outstanding results.  But the smiles on peoples faces do tell us something that we do want to know.

To put you in the picture, this is the Open Day for the prospective patients.    We are all in need of a hip or a knee, or even two knees, and as we pass round the models of both hip and knee in the introductory talk, the reality of having these implements in our own bodies comes that little bit nearer.  One lady is rather shocked about the size of the knee replacement components… horrified might be a better word.   Indeed, it is rather large.  Must be a big builder’s knee.  However, knees are pretty large being the main load bearing joint.  Putting my fingers on both sides of mine, I suddenly realise how large it is.

Another man asks a question about lubrication between the joint components.   Ermm..  I don’t think it comes with oil or anything.  Vaseline?  I think to myself.  I don’t think that answer get’s picked up, as it isn’t quite directed to the person leading the session.  But I make a note of it.  As long as mine does not squeak I am fine.  WD40 not needed, I am sure.  As I manipulate the artificial joint in my hand,  it has a wonderful gliding action and I don’t have any worries myself about extra lubrication.  I sure glides a hell of a lot better than the current one inside my body.

Thinking about gliding, one lady asks about sports after the operation, and mentions ice skating, I think from memory pretty soon after the operation.  Silent amazement ripples gentle across the room.  Gracious, I think, I am aiming to be able to simply walk for an hour pain free.  Skating has not even occurred to me.  It is suggested that more gentle and less potentially risky sports might be a better idea. With less risk of falling!

As I sip my rather nice cup of tea, I am comforted.  The tea is good and this is VITAL to my recovery, I do know this for certain.  It was rather nice of it to be made for me, and I confess that I am not actually capable of refusing an offer of a cup of tea.

After the slide show, which is very interesting and informative and spattered with various questions from the group of prospective patients, it is time to do the tour of the centre.   Oh, I must add, the most amusing slide was patient satisfaction. Various different factors all included in this slide, all with very consistently positive score, with a funny, rather sudden drop in satisfaction when it came to the food.  However,  we are assured that is is pretty good, apart from the mashed potato, though some people like that.  Later on when looking around the ward, one patient says the food is horrible but another thinks it is pretty good, though lacking imagination.  Imagination is the last thing I would be expecting in hospital food.  She is quite happy with it though, so if she is, I am sure I will be fine. She obviously has high expectations.  It’s quite an achievement to get imagination in my weekly cooking, and I just cook for four.

As we trudge around, various types of stick in hand, we all squeeze together in the lift, going up, then down, then up again…or is it down?  Not quite sure.  But lots of lift.  I think “germs”, as we share the intimate air together,  Though I was a very good girl, and used the alcohol rub when we entered the centre.  I am relieved that my own cough, which threatens to surface along with its friend, the sore throat, has quite clearly hidden itself deep down in my chest.  Maybe the alcohol rub and the hospital environment scared it and forced it into hiding.  I was worried that I would cough as we walked around, and responsibly conscious of the need to keep any kind of infection away, I took with me a large cotton hanky to whip out, if need be.

The lift reminds me of the one at Borough tube station, and I think how much easier it will be, eventually, to travel around London.

It’s nice to be writing and focusing on the present and future.  I probably WAS a bit unrealistic to expect a Physiotherapy Department to help me on my way towards a knee replacement.  But that is looking back, again.  I have made you listen to my internal angst for long enough.

Smiling faces.

A little less smiley in the Pre- op area.   I do feel sorry, for as we all stand there, just at the entrance of that section, taking just a brief peep inside, there is a couple in one of the curtained areas. One of whom, a somewhat hairy man, is dressed in a theatre gown.  An amazing blue.  Both he, and the lady who is with him, are looking a little tense.  The curtain swishes around them, as they don’t appreciate the audience, and neither would I.  It’s nice to go to the theatre, but there are limits.  I don’t think they wanted quite such a crowd or to be quite such the centre of attention. Not before the show has actually begun.

I ask, as we get back in the lift,  if I will be able to wear my underwear in theatre.  “There is a great feeling of safety and security when you have your pants on.”  I add.  But, I find it is NOTHING at all.  The reaction of the man in the blue gown suddenly makes even more sense.  It is the stuff of nightmares… Having no knickers in public.

As we funnel from corridor to corridor, talking to a few patients here and there, one does stand out.  A man sitting in a wheelchair in the corridor looks young and fresh faced, though he is probably a bit older than me.  He has had his knee operation and says with great conviction;  “It’s the best thing I have ever done.  Don’t worry about it.” He smiles confidently. “You’ll be fine.  You are in good hands.  They are marvellous here.”   I can tell he means it.  He continues on with positive after positive.

That’s a good thing to hear.  He is a great PR man.  I am reminded of the caution about pain when you get home, but, even in the face of that, there is a certain amount of courage to be gained from that man’s conviction. I wonder if he is not really a patient at all, but maybe one of the surgeon’s planted there, pretending to be a patient.  What fun that would be.   It’s silly, I know. And no one would have time for that, however amusing it might be.  But this man is SO positive, so well placed, and such an evangelist for the place, that it wouldn’t be a surprise to find out that he was doing a job, because he was doing a most excellent job of making me feel very confident, and gifting us all with positive expectations!

On a different note, the Wi-Fi is not very good, we are told, unless you pay for it from the unit near your bed.  I make a note to download some things to read.

The Patient’s Open Day visit was well worth it, and a very good use of time.  There was plenty of opportunity to ask questions, and it is always good to meet other people anticipating the same thing as yourself.   Some people had dates for their operation, and others not. The biggest impression I got was that everyone was very well looked after.  “And that IS what you want to know…More than anything else!” I said to a couple of people I was chatting with. “You want to know that the staff will look after you really well, and that you feel cared for.”  They agreed.  As we waved each other “Bye bye” and walked off into the car park, the thought of moving on, just that little bit more easily than before, did promise everything very good indeed.  Even with the pain.”

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The day of the pre-assessment appointment:

 

23rd January Pre-Operation Assessment Appointment

In the dark and early morning the car is covered in glitter…Well, not glitter, but it is good to think about it that way!   You can see I have my positive frame of mind in place.  This is important.  Because ice reflects light and makes things look beautiful, even in the darkest times.  Though the time is not nearly as dark as it appeared before the nice consultant orthopaedic surgeon not just listened to what I was saying, but actually heard it.  There is a bit difference between listening to, and hearing someone, I have discovered.

I’m dropped off at Macdonald’s in Epsom, and will get a bus from there.  The bus which goes right through to the hospital gets there a little bit too early, and the next one is too risky and would possibly mean I get there too late. Timing is everything.  I still feel sad that to get to the point I have feels like it has been “walking through fire”  It is hard being just 52 with osteoarthritis of the knee which makes a sudden, disabling and painful entrance into your life. It is made harder by negotiating a system which basically dictates that at my age I will be treated with physiotherapy and that will work and I will not be needing to see an orthopaedic surgeon or be needing to talk “knee replacement”. (at previous hospital). I am rambling on about this, in order to get it out of my system so that I am in a place where I can move forward without looking back.  So apologies in advance for any repetition. I need to harp backwards a bit from time to time. It’s still early days.

Having worked with exercise and pretty much everything else I can think of on my knee since August 2015 I have tried to go along with the general drift away from surgery.  And it is the case that one needs time to get one’s head around the situation.  But when pain and disability completely dominate your life, start robbing you of the things you love, and you realise your self that things are steadily getting worse and not better, it dawns that if the choice is between carrying on as you are (which involves not being able to walk for longer than ten minutes reliably, among other things) or having your knee TREATED….It’s then that suddenly clarity dawns, and you realise that it is insane for someone my age with my activities and aspirations, to decide to live such a restricted life unless there is no other option.

The problem is felt rather intensely when you realise this, and then need to start putting it across to others,  in order to change the direction of your treatment.    I struggled with this, because of a sense of swimming against the flow…Because of my age I think, (too young for a knee replacement?) and because of my awareness of policies which, (rightly, in one respect), are in place to ensure that people do not have knee replacement surgery that they do not need.  The difficulty for me has been putting across my own need for definitive treatment, (surgical!) and believing that it may actually be met.  On some ears my plaints have been heard, and very well indeed, and on others, some strange thing has happened which seemed to take what I was saying and pop it off somewhere else, in a more convenient place.  A place which did not include the surgical treatment of my knee. Hence the feeling of not being heard at times I think.  And the feeling that my quality of life has not mattered quite as much as it does.  I am STILL mulling it all over!

However, I got through in the end.  It has been frustrating at times.  Some people “get it” straight away. Most people, actually.  Normally, the people who know you well, and who see how your life is affected by pain and disability, who care about you, and are able to say what they think (without any other obligations or responsibilities which need to be met) will be very helpful to listen to, because they will speak common sense.  So, while I feel things have been a struggle, and possibly harder than they needed to be in some respects, I recognise that I have learnt a lot about listening to others, listening to myself, and the need for perseverance and assertiveness, if you happen to be in your early 50’s and needing (and wanting!) knee replacement surgery.  I have learnt that people can be very compassionate, but are often also very restricted by external factors which they have no control over.  The most important people involved in decision making with respect to my care and treatment didn’t have any hearing problems, which is something to be very grateful for.

Well, I have digressed, as per usual.  The Pre-Op Appointment was fine…Nothing very exciting.  I did a “naughty” thing by putting my urine sample tube on the patient reception desk (Oops!  I should have known better)…not good for infection control. (Don’t worry, I only used to be a Dental Nurse and it was a VERY long time ago!) I did offer to wipe the surface afterwards.  (Well, it’s nice to know infection control is so tight. Very positive).

The waiting room is full of people much older than me.  That’s good.  Makes me feel younger.  And such fellowship with all those walking sticks everywhere.  Rather novel.  Suddenly, instead of being the only one in a  room with a stick, I am among fellow stick bearers, and what is more, some bearing sticks far more impressive and medical looking than mine.  Even a WALKER!  Wow!  The business.  (I do not mock.  I will have my walker time post op.)

I had chosen my distinctly non-medical “Leki Wanderfreund” walking pole for the trip to the hospital, as I did not have much walking to do, and so the crutch was not necessary. So feeling elegant and as little disabled as possible, under the circumstances.

Filling in the Oxford Knee Score as I wait in the waiting area, I do my usual thing, and end up realising I have slightly under reported the effects of my knee, but this is the effect of a positive disposition I think.  I am an optimist, rather than a pessimist, at heart. I focus on the positive, realising I need to do this naturally, because the brain itself tends to graduate to the negative, for some annoying reason.   I completely forget that for a lot of my journey to the hospital I have been worried about my knee giving way (because it has been in it’s “out of joint”mode for a couple of days) and I also mysteriously forget that frequently it does not feel stable.  Regardless of this,  under the question “Have you felt that your knee might suddenly �give away� or let you down?”  I tick the box  “Sometimes or just at first”.   Which is generous of me.  (Well, you know, I love my old knee, decrepit as it is.)

As for the “Let you down”…Yes, it lets me down all the time, however, I don’t think it means that!  Knees “Let you down” when you have to organise your whole life around them, and they don’t promise to take you anywhere without moaning and complaining, with threats of punishing pain in the evening if you don’t abide by their rules.  Think… tyrannical child, and you will get my flow. Think, you need to change (or better, just forget) the plans of your life, or you WILL be let down, because you will have to either come home early, or simply cancel what you have planned. A few  “Days Out” which last just one hour or two at the most, end up being memorable for all the wrong reasons. And realise that whatever you do,  your knee might just say “I don’t feel like it today.” and so you cannot predictably tell what you will be able to do, either in respect to work or leisure.  You can go ahead and aim to do what you can regardless, which is pretty much the best thing to do, but the adjustments in your expectations gradually fashion your life which you notice over time is basically shrinking, simply because you are completely fed up of your knee “letting you down.”

Does it mean that?    I don’t think so.  But this is what it means. REALLY means

But this is an interesting matter. The Oxford Knee Score, as far as I am aware, was designed as a post operative measure/tool.  I am not dead certain, but I think so.   There also seems a great deal of difference between assessing a person’s situation over a period of ONE MONTH only and before they have had an surgical procedure,  and how things are longer term. Or shorter term after an operation.  It certainly is not a quality of life assessment tool. It should include something along the lines of “Has your knee made you feel depressed and is it dominating your life in an unreasonable manner” maybe!

I think there must also be issues for younger patients as myself, in the respect that our bodies may well be more supple, flexible, and able to adapt than that of a more senior person.  This can  render some of the questions (I am thinking of the  washing one!) a pretty invalid waste of  time.  Bear in mind, I can do more than touch my toes.  (very supple and super hips!) I don’t need to involve my knees very much at all in getting down on the floor if I use yoga moves to help me.   The Oxford Knee Score probably needs a little attention to improve it I think.  It is a patient perception gauge questionnaire also.  Subjective.  I can appreciate it’s usefulness on one level.  But also it’s limitations.

I expect I will be needing to fill one out after my knee replacement surgery, but I know one thing for sure; it should certainly not be used to judge the success of the surgery or if it has improved my life or not.   It shouldn’t be used to assess if the surgery is worth having.  It doesn’t have anything about desperation, frustration, depression and anxiety in it, for a start!  It does’t have anything about desperation and frustration in patients who fall through the net of it’s questions, even though surgical treatment  makes a lot of sense and needs discussing positively.

As part of my experience, I have done a little bit of surfing the internet.  It is the only surfing I am able to do.  So if I find things which catch my eye, as this narrative unfolds, I will be posting snippets now and again.

“procedures of limited benefit”  What????????????? A knee replacement.  Are they sure? What on earth is that all about?

This is an interesting section of the Biggs Report:

“However, to date there has been no formal approach to
the British Orthopaedic Association (BOA) the Orthopaedic
Specialist Societies, or the British Orthopaedic Directors
Society, who are ready to engage fully and help solve these
problems.
Procedure lists have been generated by PCTs and circulated
to GP practices with advice on “procedures of limited benefit”.
Again lists vary and demonstrate very little consensus or
joined up thinking. These include procedures such as THR
and TKR, two of the most effective surgical procedures
in all the surgical disciplines. Again these lists have been
generated without discussion with the orthopaedic community,
leaving some patients, especially the elderly, confused and
disadvantaged.
In April 2009 the DOH introduced Patient Outcome Reported
Measures (PROMs) for a number of surgical procedures.
These included THR and TKR as well as surgery for inguinal
hernia and varicose veins. PROMs are measures of a
patient’s health status or health-related quality of life and
are typically short, self-completed questionnaires, which
measure the patient’s health status or health related quality
of life at a single point in time. They contain both condition specific
(Oxford Hip and Knee Score) and general health
questionnaires (EQ-5D). Using the results from these
questionnaires it has been suggested that THR and TKR are
not as effective as they clearly are. Much of this was derived
from selective use of the EQ-5D data results. What must be
clearly understood is that patients, who suffer from multiple
co-morbidities such as multiple joint degenerative arthritis, or
heart disease and diabetes, may not see a huge increase in
their overall quality of life following these procedures. However
when asked specific questions about the joint replaced,
patients find the results very satisfactory indeed. Spinning
disinformation about joint replacement in this way confuses
patients and puts them at a disadvantage in the future for it is
well known that earlier intervention for osteoarthritis of the hip
and knee using THRs and TKRs results in better outcomes for patients.”

http://www.gettingitrightfirsttime.com/downloads/briggsreporta4_fin.pdf

Back to the Pre-op Assessment.  All went well.  Lovely ladies seen. Blood, urine, swabs, heart, blood pressure, weight, height.  All of that.  Then off back home.  Done.

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The tail end of “The Very Patient Knee Replacement Story” covers my visit to an osteopath, which was a new experience for me.  I plan to return soon, as I found it very helpful and effective.  I am sure my new knee will benefit. I will include the tail end of my patient account here, not including the osteopath part.  If you have managed to read this all and want to read more, there is more to be read!  But this is no doubt plenty for inclusion in this ongoing artist’s journal.  It’s more than enough of a taster of my writing!  Here’s the section at the beginning (or the end, depending on which way it is read!)

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Diary of a Patient’s Experience of a Knee Replacement Journey…

This “The Very Patient Knee Replacement Story” is something written for me to look back on more than anything else.  Bit of a liberty to put it here.  However, my knee is my knee, and the art of a surgeon is surely art.  People often refer to a person getting a “new knee” but the knee is not new… It’s resurfaced, with a post and some other bits!  It makes me think of my days as a Dental Nurse, and all those crowns we used to do, though of course, it is more complex in lots of ways.  It is major surgery…and not just a minor operation.  I am very aware of that. A lot more complexity, and a lot more disturbance all round.

I have realised that if I want to write anything more about my knee, I might as well do it now, before the forthcoming knee replacement operation!  I have done a fair bit of reading around the subject, and I will try and include links to interesting articles on knee replacement matters as well as rambling on about my own experiences! I am writing this part now (I am in January 2017 at present) but will publish it later, probably well after my knee replacement.  So it will be written in the present tense but published at a point when then, technically,  it should be written in the past tense.  It is more like a diary then. And old news!  Yet the present tense is nice and fresh, so I won’t change it.  But I also like to write with a little bit of distance between my experiences, rather than right in the midst of them.  So even these dated entries, written in the present tense,  are likely to include some writing in the past tense, as I tend to enjoy a  retrospective narrative.

There is a fair amount of looking backwards going on. Sometimes we have to look back in order to move forwards.  The main notable event which I don’t cover in this story is my consultation with the surgeon, with whom agreement was made and on whose list I was firmly and very happily placed in November 2016.  Then the nature of time changed for me, and it flew by.   Before then, it dragged.   It’s amazing the difference between the four months from November to March 2107 and from June to October 2016.  The former seems like no time, but the latter seemed like eternity.  I think many patients in need of treatment could  relate to this experience of time in relation to waiting.  And also to many of the emotions I have shared here. It’s cathartic for me to express myself.  Though I will re-cover some areas again and again!

So, for January 2017  “How is your knee?”

I am keeping any  knee aggravation and inflammation down as much as I can, but the cost is that I cannot walk very much at all.  I can do ten minutes, and sometimes more.  Some days are quite good, and other not.   But both standing and walking, even just round the house, demand payment at some point.   It is just too restricting.  Ice, TENS, Meloxicam, massage, breathing, relaxing, Yoga, Prayer, Mindfulness.  All are very good.  And now I still continue to do my exercises, but have become a little more gentle and selective about what I do, the symptoms are a lot more manageable.  Exercise is very important, but there is a delicate balance to be kept in the process I think. I am not walking much at all in terms of walking being a form getting anywhere!  The good part of this is that when I do, in five and ten minute stretches,  I am able to walk very nicely, unless some random lapse occurs (which does happen…Hence sometimes needing even a crutch, rather than a walking stick!) At other times I can walk without a stick even, for a little while at least.

I have given up trying to make sense of what is happening to the knee day by day, which is helpful! I am at liberty to do this because it does not bode any drastic further deterioration, I  imagine.  I think the relief of having forthcoming surgery has made the world of difference.  It has taken away the biggest pain, (well, in the chronic sense, at least)  which was that of what felt like a life sentence  of severely restricted mobility, with the added torture of the fact it could actually be treated, sandwiched between the distinct impression that, as far as possible, I should endure it needlessly for the sake of avoiding surgery.  Yuck.  I did my research.  And weighed things up. This didn’t seem right at all.

I am keeping things down in terms of aggravating my knee, but getting as much non weight bearing exercise as I can. Walking around the house is necessary, but does get very painful over the course of a day and sometimes even right at the beginning of it.  I can swim for an hour, which is pretty much keeping me sane and happy. Because it is great to move swiftly with no pain. When anyone asks me about my knee, I just say “it’s fine”.  I don’t need it to take up any more of my life and focus, as it has done that already.  And going on about pain and disability is mega boring when you have been experiencing it for a while.  I have no interest in that at all.

However, I guess it may be slightly confusing for someone to hear, when asking about my knee, (knowing that it is causing me problems),  “It’s fine” and then be told I am having a knee replacement!  The reality is, though, that even though I am wonderfully supple, (thanks to Ballet at a young age and Yoga later on), have worked on my whole body, which has done a fine job of compensating for the knee issues in many ways, and have, (though it has not been easy at all), psychologically worked my way through paths of pain reasonably well…The reality is that my life over the last 15 months has been restricted and affected in a way which is unbearable for me.  And I feel a lot better now knowing that the bone aspect of my knee will be addressed. The progression of osteoarthritis in my right knee has been very rapid, and this may be unusual. But X-rays along the way have clearly shown the rapid decline. It seems foolish to hold some vague optimistic idea that things will improve long term.

I realised, after going through various stages of thought, emotion, research and understanding, that is it insane for someone of 52 years of age, with ambitions and aspirations, responsibilities and the activities which I am involved in, to watch that all sink into stagnation because of just one knee.  Not being able to walk as I used to (walking is my main form of transport) has been the most distressing part.  Though this varies, and a stick or sticks can help,  the reality is, that a person needs to be able to walk reliably in life.  If this is not possible at all, not treatable, not realistic, then acceptance must be the path.  However, I realised that for me personally, it is insane for my joint problem which CAN be treated surgically, not to be treated. In my case, I think any aspiration of wanting to hold off surgery for as long as possible is very misplaced.

For someone wanting to avoid surgery, then things may be different.  They may want to, or be content to accept, (or be forced to accept),  a more restricted life.  There is nothing wrong with that, if this is something which doesn’t destroy your soul.  But the major cause of difficulty for me has been the fact I have wanted my knee joint treated definitively for many months,  and yet I have felt that the necessary treatment was not available/going to be offered to me. I can only base my review on my own perceptions and experience. It’s possible I may have had more doubt about my access to surgical treatment of my knee than was there, but it is pretty hard to make a judgement about that, not having access to all the relevant sources of information. It was just a distinct impression.  Sometimes those are quite useful.

I wanted my knee joint/right leg  seen by a specialist a long way back in September 2015, but I made the mistake of not insisting on this.  I should have.  But I adopted a “wait and see approach” without a specialist opinion, which resulted in more anxiety and doubtless more pain than was probably  necessary.  When I did get one in June 2016 (Extended Scope Physiotherapist), the need for a knee replacement at some point was identified.  I thought long and hard and decided that I did want my knee treated in the way deemed most fitting by a surgeon.  Once coming to this point  the need to  see a consultant to talk about the surgical treatment of my knee arose very decisively  in October 2016.  It had been six months since seeing my GP and three since being referred for Physiotherapy, but my knee was continuing to deteriorate and still impacting my life in an unreasonable way.  I’m a good communicator but somehow was not heard.  In the end I lost patience with the hospital I was at, and sought a fresh start at a different hospital under a different NHS trust, hopeful of being heard a little more clearly.  I do not have the financial resources to pay privately, or I would, because it would have been a lot easier a path to walk along. I can only find solace that in the difficulty of pursuing what I wanted, I gained a lot of very useful inner strength, which is an asset to have, and useful experience.

I am not unhappy now, because after consulting with a surgeon in November 2016, and being heard, as quick as lightning,  I am now listed for surgery, for which I am overjoyed.  People keep referring to it as “The light at the end of the tunnel”…This has been used four times!  However, I do not see it like that at all.  For me it is simply a beginning.  It will involve hard work, again, on my part.  There are risks… I don’t know what the outcome will be.  I am simply relieved that I have been able to work my way into a place where surgery has been offered to me.  The thought of being able to walk around for a whole hour is what I hope for.  At the beginning of 2015 I could walk for three hours, non stop.  This seems a world away from me right now.  In chronological time, my journey from rapidly deteriorating knee function and pain (from August 2015) to surgery has been relatively short. (19 months) Well, not short exactly, but short compared to how long some people endure the pain and disability for.  But it doesn’t feel that way to me. It feels long.  VERY long.  When you are distressed, desperately trying to improve things, and hoping like mad they will get better, but this does not happen, every month feels like a very long time!

I need to make sense of what has happened so far.  Even though I look forward to a new kind of start and the past  seems a bit miry now, I do finding writing about it helpful. I believe I was patient, and reached the end of my tether in June 2016, ten months after my knee symptoms kicked off in style. I think a big factor in the rapid deterioration of my right knee is related to it’s past injury in 2010.  I slipped very badly on an icy pier but didn’t get it treated at the time.  I never quite felt this past injury was taken into account as much as it needed to be in relation to the likelihood of my knee condition getting rapidly worse, but my gut instinct told me that it had a lot of bearing on the matter.    I “went the extra mile” and choose to persevere further, exercising more patience, even though this was difficult.  But I lost it in the end, and that wasn’t a bad thing! Sometimes patience is not a virtue.  And patience is not passive.  It has an element of waiting to it.  But you can be patient and active.  I think that my time of “hanging in there” did turn out to be positive in the end, because I wasn’t just passive, but did engage in everything I could possibly do to improve the situation with my knee.  But with the patience, also comes the need for good sense, and wisdom.  My knee joint was struggling, and so was I. Things were not getting better, and could not get any better. There were short phases of small improvements, but they were always followed but a further, and more noticeable decline.  This meant that any “better” never had a chance of ever being good enough!

Knee replacement surgery was not something I expected to be part of my life, but it is something I am very glad of, though of course  there is some concern, because I don’t think surgery is to be taken lightly at all.  I am mostly (still) sad and upset about how difficult it has been to be a patient with a chronic long term issue, ie osteoarthritis,  who simply wanted an aspect of the problem (my knee joint) treated in a definitive (surgical!) way, but who felt this could not be possible because of the current elective surgery rationing which clearly is happening. I suspect it is happening more than most of us are conscious of.  Feelings are not always reliable, but my instincts normally serve me very well in life, and I do not think that they were incorrect. I had to fight very hard with my own expectations, and make sure I moved them from what I felt I could not expect to get, to what I wanted and needed mattering enough for it to be taken seriously. “Taken seriously” means being given the opportunity to have a knackered knee treated surgically, in my book.

My own instinct and feelings have, possibly, both helped and hindered me..  Aware of being both a “young” and “obese” patient, I felt it was likely that deferring me away from surgery might be something I would have to quite literally come up against.  The deterioration of my joint was more rapid than I expected, and I was aware of the long term nature of osteoarthritis, and the fact that many people trudge on through their lives with it for many years without wanting, needing, or expecting it, to be treated surgically.  I think the battle, (and it has felt like one), has been not just external or internal but both.  It has been with myself, in terms of expectations, faith, and just the encounter with disability and pain, and also with my experience of finding myself within a health system which is overstretched just that little bit too much, and therefore needs to send as many people away from it as soon as possible. When you start swimming against the tide, and start expecting more than the system is designed/managed to give, you feel the pressure.  When you realise what you want is not on the wider agenda, even though you need it, it does then start to get rather worrying. You do feel the pressure. And things are harder anyway. When you cannot physically get where you want to go all of the time!  You don’t want extra grief!

This pressure,  is itself,  something for both patient and clinician to manage. It cannot be easy for either.  I am sure that the current state of affairs within the NHS health service must be exasperatingly difficult for all those  who work in it.  I don’t feel surprised I found things so difficult, this “being a patient” matter, because things are always harder for you when your life has suddenly changed in a way you did not expect.  It’s devastating.  And all the good intentions in the world, from individuals themselves, do not actually change the general flow of the system, or what it can and cannot offer.   The reality is,  for someone who is  (comparatively!) “young” in terms of being a knee replacement patient (I think the average age for knee replacement is around 65 years of age -ish), but whose knee has steadily deteriorated at quite a speed, (and who therefore has, clinically rather more of an “old” osteoarthritic  knee), the feeling that you MAY be expected to grin and bear it for another few years,  does creep up on you with reliable certainty, especially in the current climate. And a FEW years for a 52 year old, isn’t really a few years if the objective is to avoid revision surgery, and have say, 8 years of your life severely affected by  pain and lack of mobility.

So it all starts to feel very uncomfortable, this delaying knee replacement surgery business.   It does not make sense to my way of thinking. If I want to loose  years of active life to pain and disability, I would rather have that at the end of my life, than at this point of it.    I understand there are important surgical considerations, and surgical treatment does bring dilemmas for both patient and surgeon. There are  financial cost implications for CCG’s.  (I cannot miss that consideration out, can I!)   However, I do not think that these dilemmas should be a reason to dissuade people from knee replacement surgery if that is what they really want and there is sufficient clinical evidence, plus disabling/pain symptoms, which merit it.  Last year I was dissuaded from it in fairly subtle, yet very present ways.  But, whatever other considerations come into play, it is my  knee, and I am the one who has to live with it.

Quality of life is a pretty major thing. Correction.  It is everything!  In the end, it is the patient themselves who has to take a very good look at their quality of life,  and decide if they can accept the effects of their knee on their life, or if surgery is the right way forward for them.   It may not be logical or possible to encourage people like me (fat and in their early fifties!) in the direction of surgical treatment of their knee, even if it could potentially transform a life. Well, not within the NHS system at least.   Because knee replacement is an elective surgical operation but also costs the NHS money. And money is too short.  Oh, I do now feel more passionately that the NHS needs investment in! I have learnt how much it matters to me!

But money matters aside, if you choose knee replacement surgery, you do need to want it.  REALLY want it. It’s pretty demanding recovery and rehabilitation wise.   And you may need a lot of persistence and determination in the process.  With stretched resources, the provision of  elective surgery, for example, a  knee replacement operation, for a 52 year old female, with BMI over 30,  is bound to be something which attempts will be made towards discouraging.  Not everyone will be discouraging. But there may be a general climate of discouragement. Put it this way:   I understand a little of the funding restrictions and different policies.  They exist, and are in place.

I started out with avoidance of knee surgery on my own agenda also.  For a short while.  Yet, as things began to change, and my knee condition and symptoms deteriorated, the gravity of daily pain and never ending disability became clearer and I  began to get more of a grip on the reality of my situation. I was very grateful for the physiotherapy input I received. But doing everything in my own power still was not enough.  So then, the general flow away from knee replacement surgery began to feel rather insidious.  If my knee joint needs treatment, which it clearly does, based on the X-ray, among other things, then why am I being steered in the opposite direction?  Is this because having a knee replacement is really not going to be a good decision for me, or is this because resources are so stretched?  Why, when I tell the physiotherapists at the hospital about how my life is impacted,  am I strangely heard, but yet not heard?  Why am I communicating that I am at the end of my tether, and insisting that I want to see a consultant to talk about knee replacement surgery, yet more physiotherapy, (though I have been doing daily exercises for well over a year) is proposed?  Or why is it suggested that I wait a few years, (as if I had the liberty of effectually wasting two years of my life, putting all my creative activities on hold, just for the sake of I do not know what?).  Why am I basically told by someone else, who knows nothing about my life, work, and normal activity levels, that my knee “does not affect my work”?  Or that I could “take a taxi to deliver” to pick up art work, or that, though I cannot sit without pain with straight legs (to do the Yoga I love so much), that the simple answer is that I “just don’t do it.”

Maybe I would like to be able to sit with straight legs, and no pain?  Maybe, at only 52, it would be nice to have my knee treated in a way that it can potentially yield some improvements? Maybe it would be good to be able to walk around as needed each day.   Maybe that matters to me. Crossly, I wonder if the basic idea is that 52 year old women don’t actually  have much of a life worth bothering about. It is the logical conclusion. I am slightly dazed with disbelief when I look back on it.  At the time, I simply felt I did not matter. There is some room for my anger to exist here.  I can still be patient and have feelings of anger!

I have no doubt of the good intentions, and as I said before, was willing to try out some more exercises.  But these responses are not realistic answers for someone who cannot walk for longer than ten minutes reliably, and whose life is now blighted with  (avoidable) pain and disability. Even though I am disappointed about some of the responses I got, there were also positives, and I appreciate the help I did receive, and the input I received which it was in my power to effect, I did so, and most gratefully.  I can appreciate If I were working within the system, I would possibly  say the same kind of things if it was my job.  Anything said was intended to be helpful and certainly wasn’t a case of lack of care.  I think my experience was simply because of limitations. One has to work within the system and the system is too much stretched. And, though I was not prepared or willing to accept certain limitations on my quality of life, it may be that many other people would accept those limitations.

Anyway,  in the end, because of my  own abilities with communication and analysis, I was able to put my situation across in a way that got heard, in the end.  But this was not easy at all, even for me.  I needed to produce my own review of the situation and make my own assessment as to what was really going to serve my own health and well being in the best way possible. It was not right to accept how things were. I feel concern for those not able to do what I could do. To disregard, or even underplay,  quality of life, is certainly  convenient in the service of cutting down the availability of knee replacements offered on the NHS.   At least I did get  where I was coming from across in the end, but it was hard work.  The general experience was, regrettably unduly difficult, I feel. However, I did learn a lot through it.  Sometimes that is what happens when situations are challenging.  We find something inside ourselves that we did not know we had.

It is significant, I think, that neither my own GP, or the surgeon to be, have in any way been un-supportive of my own choice and experience, and I have felt they completely understood my perspective and respected it. I feel they both have a good measure of where I am coming from.  Boxes must be ticked and forms filled in, and some delays come through crankiness in the system, and little things  do go wrong from time to time, making more delays.  But as I practically fell onto the desk of both of them, (one in tears of desperation and the other time grimacing with frustration!)  there has been no discouragement or lack of receptivity with respect to the impact of my knee on my life.  The sticky mud I encountered really does appear to be something which is related to the previous hospital.

That past hospital experience (not  the hospital I am under the care of now) did not work out for me.  I lost faith, trust, and patience, in the end.  When resources are stretched,  the rationing of knee replacement surgery comes into play in a big way. I understand this.   I also think it worth tempering my words with the consideration that it does take some time too open oneself up to opting for knee replacement surgery.  Though I found my experience  unnecessarily difficult, and  would have appreciated some encouragement towards getting a knee replacement, rather than discouragement, I think, all things considered,  the struggle was worth it. I learnt a lot through it.  Knee replacement surgery isn’t something to rush into.  But surgical options of treatment shouldn’t be denied to people who do need and want them.  And quality of life is VERY important.  That is pretty obvious really.  But it does not appear to suit the system at all.

I feel I may have already gone through the hardest part of the process, which is getting to the place where surgery is offered. But I may need to review that thought in the future! If you have read this, then thank you for bearing with me, for I need to turn it over in my mind.  I found it hard. Life was a struggle.  I might need to turn my experience over a few times before I can finally completely let it go!

For reading today, I read this…Could not resist!

http://www.medscape.com/viewarticle/868379  If you cannot get to it via the link, just copy and paste the title and you can read it.

When a Knee Replacement Specialist Needs His Own New Knee
Ira H. Kirschenbaum, MD

Here I quote the Editor’s Note:

Editor’s Note: Ira H. Kirschenbaum, MD, chairman of the Department of Orthopedics at Bronx-Lebanon Hospital Center, Bronx, New York, has performed over 3500 total knee replacements. When Dr Kirschenbaum needed a new knee himself, he kept a diary from a perspective he had taken for granted that he understood: that of his patients.

Despite being an expert on the procedure he was about to undergo, much about the experience leading up to the surgery was unexpected, which Dr Kirschenbaum recorded in his diary. Part 1, presented here, offers his thoughts before and immediately after the procedure. Part 2, coming soon, includes his reflections on postoperative pain management.

And the wonderfully irresistible title is: “My Knee Is Now Your Knee”!

Part two is here: http://www.medscape.com/viewarticle/869491_3

The link does not always seem to bring you straight into the article, but you can access it in other ways, either by copying and pasting some of the editor’s note above or try this link:

https://www.braceworks.ca/2016/09/17/treatment/when-a-knee-replacement-specialist-needs-his-own-new-knee/

I also enjoyed (if that is quite the word!) reading this blog diary of a knee replacement:

http://www.barder.com/3942 Brian Barder writes delightfully…

 

 

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