Diary of My Bilateral TKR: Preface and First Chapter

Helenbothknees
Helenbothknees Member Posts: 487
edited 4. Apr 2014, 10:21 in Living with Arthritis archive
I mentioned that a while ago that I was thinking of writing an ebook about my TKR, based on my posts here, and someone asked if I could post the first chapter. It's now in draft form, with the preface and first chapter in final version (possibly). Here they are, for anyone who's interested. Comments welcome!

DIARY OF MY TWO TOTAL KNEE REPLACEMENTS
(Bilateral TKR)

By Helen Krasner

Copyright Helen Krasner 2014

All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without permission in writing from the author.


Preface

I had osteoarthritis in both knee joints for around 15 years, starting at the age of about 50. As with most cases of this complaint, no-one really knew why, although a family history of arthritis, bow legs from childhood, and a history of long distance walking in my 30s were all, at different times, cited by the medical profession as possibilities. By the way, I really do mean long distance walking – in 1986/7 I walked nearly 5,000 miles round the coast of Britain, gaining a Guinness Book of Records entry and the material for my first book (Midges. Maps & Muesli, Garth Publications, available from Amazon in both print and digital versions).

Anyway, whatever the cause, the pain in my knees began when I was in my early 50s, and varied at different times between being just mildly inconvenient and utterly excruciating. I tried all kinds of remedies – homeopathy, acupuncture, crystal therapy, Bowen technique, chiropractic, etc etc. I went on different diets, reputed to work wonders. Some of these seemed to help for a while, although of course it could have been just chance, as arthritis pain can tend to come and go for no apparent reason. But the pain got gradually worse overall, and after about 14 years I was on regular strong painkillers – which really didn't work very well – and cutting back severely on my previously extremely active life. It soon became clear to me that the only answer was going to be a TKR or Total Knee Replacement...or rather, two knee replacements, as both knees were equally bad. I wasn't keen on the idea; it's major surgery, and my reading had suggested that only 80% of people who had TKRs were happy with their new knees. But I was getting desperate, and could see myself in a wheelchair before too long if I didn't get something done.

On my next visit to the GP I brought the subject of TKRs up, the first time I had mentioned it. He wasn't encouraging, assuring me that my knees weren't bad enough, and...”maybe in a year or two...”. Meanwhile he suggested steroid injections in both knees, which I tried, though I was becoming less and less convinced that anything would help – and his attitude to my suggestion of surgery sent me into a state of despair. The injections didn't work at all, though they do help significantly for some people, and I went back to the doctor's surgery. This time I saw a different GP, who in fact herself suggested knee replacements, telling me there wasn't any other treatment left, and asking me how I felt about it. Very relieved by now, I agreed, and was referred to a specialist. There's a moral here: see another GP if the first one isn't helpful.

Soon afterwards, I found myself booked in to have both knee joints replaced together, known as a for a 'bilateral TKR'. I was 63 years old.

This short book is an account of my operation and recovery. Some of it was written at the time, mainly on line on the forums of Arthritis Care (www.arthritiscare.org.uk ). I discovered this site very soon after coming home following the operation. I found it extremely helpful being able to compare notes with others in a similar situation, for after I left hospital I felt very isolated. This is quite common. It is difficult to know what to expect after major surgery like this. You are given general advice, but not a lot of details; in fact, if the operation goes well you are pretty much left to get on with recuperating by yourself. This may work for some people, but many of us would like more guidance.

Hence the idea of this book – a diary type account of my operation and the year following. A year to eighteen months is generally given by the medical profession as the amount of time during which improvement may be expected after a TKR, and in my case this was true. I have taken as much information as possible from my forum posts, and for the rest I have had to rely on my memory, as I did not keep a formal diary at the time. So I should emphasise that some dates may not precise, especially in the later stages of my recovery.

It is important to realise that this is merely one person's personal account of a TKR and its aftermath. Everyone's recovery is different. Furthermore, although I kept myself well informed about the operation, I am not medically qualified, and none of this should be taken as professional advice on what to do or what is the 'right way' to go about things. This is merely how it was for me. And I am simply hoping the book will be useful for some people who have knee replacements, particularly those rare birds like me who have both knees operated on at the same time. So read, and I hope you find it helpful...

Helen Krasner
April 2014

Contents

Chapter One: The Hospital Stay
Chapter Two: First Month
Chapter Three: Second Month
Chapter Four: Third Month
Chapter Five: Fourth to Sixth Months
Chapter Six: Seventh to Twelfth Month
Afterward

Chapter One: The Hospital Stay

Operation Day minus 3
I go to the hospital for my pre-op assessment. I've already been told that I can have both knees replaced at the same time. At an earlier meeting the consultant announced bluntly: "The X-rays look horrible, and your knees themselves look even worse; there's not much point in doing just one". He also said I could have them both replaced in the same operation, and I'm really pleased about this. It'll mean just a few months out of my life, instead of an expected year or so spent recovering from two operations. However, I'm expecting the operation to be in a few months time, as I've only been on the NHS waiting list for a couple of months, and I was originally told I would have to wait around five months. But after a few tests, the young registrar asks me: "When would you like them done?" When I reply that I'm happy to come in as soon as possible, he tells me they have a gap on Sunday, ie in three days! Otherwise it'll be at least a month, he tells me. I panic – we have theatre trips arranged, promised articles not finished (I'm a freelance writer, and I have a couple of regular monthly columns), food and medications to sort out for our five cats. David (my partner) says I should go for it. He'll take care of everything and my health is more important - of course I can make it! We agree that I'll go in that Sunday morning.

Operation Day minus 2
The NHS can really get things done at speed if they have to. I have visits from people to check the height of my bed, chair, and toilet. They decide the bed and chair are OK, but the toilet is too low and they'll provide something to put over it; also a board for the bath so that I can take showers when I come home. Meanwhile I give David numerous instructions about the cats, and pack a few things to take in with me. These include a skirt, as I've been told I'll never get trousers on after the operation as my knees will be too swollen. Finally I'm more or less ready. I feel as though I've barely had time to think about the actual operation, but that's maybe just as well.

Operation Day
After a fairly frantic couple of days trying to organise my life, David drives me to the hospital, 18 miles away, for 7 am, with me still giving him instructions on cats' pills, phone calls and messages, appointments etc. We control freaks don't let go easily. Still, at least I haven't had time to get nervous about the operation itself. David stays with me till they wheel me in to theatre late morning....not sure why I had to arrive so early, as mine is the last operation that day. I'm having a spinal anaesthetic but I refuse a sedative; I want to know what's going on. Mad or what? Some people think so, and the anaesthetist is a little surprised, but happy to go along with my wishes. However, he tells me to let him know if I get the least bit anxious and he can give me some sedative at any time during the operation.

At first I quite enjoy the whole thing, in a macabre sort of way....disinfectant on both legs, which are now totally numb, wheeled into the operating room itself, but I can't see what's going on, as there's a curtain between me and the surgeons to keep everything sterile. However, I can hear, and carry on a conversation – and at first I do. The surgeon, who is quite a character, asks if I want a running commentary on what he's doing. When I say that I'd like that he does indeed give me a blow-by blow account, along with his own brand of jokes..."OK, we've cut through, and guess what, there's nothing wrong with your knee"... “Cartilage left? Let's just say if you were a carpet you'd be threadbare”...and so on. There's lots of drilling and sawing and vibrations – this feels more like carpentry than work on a human body. However, all goes well till late during the second knee replacement, after about three hours, when I start to feel very cold and a bit strange. It turns out my blood pressure and temperature are dropping. For this reason they take me back to 'Step Down' ward, which is halfway between Intensive Care and the general ward. They tell me it's just a precaution, and I get annoyed when I find there's no TV in Step Down, as I want to watch the Wimbledon final. I have a disturbed night as the morphine I'm taking for the pain makes me sick, and I keep being woken up by the alarms when my blood pressure gets too low.

Operation Day plus 1
My blood pressure is back to normal and I get moved to the ward - to a private room as that's all they have. Private room and my own bathroom, on the NHS; I'm not complaining, although its almost too quiet. My legs are already moving quite well. This is probably due to the fact that as soon as the anaesthetic wore off it hurt to keep them still, so I just had to move them. I was also obsessed with doing the exercises as soon as I could, since my instructions said to start exercising as soon as possible after the operation. I was also worried that my new knees wouldn't work, and moving them, painful though it was, was reassuring. This worried the non-orthopaedic nurses in Step Down, who thought I should be resting so soon after major surgery. However, I'm in a lot of pain, and demanding morphine every hour or so. Usually I get it the moment I ring the bell, but sometimes the nurses are too busy and I have to wait....

Operation Day plus 2
The physios turn up. I can already bend both knees past 90 degrees, and they are delighted. I'm told this is very unusual at such an early stage. In fact, I have read that this is as much movement as many people get, and earlier I asked one of the registrars if that was all the new joints were designed to do. He assured me that they were made to bend all the way back, and that is theoretically possible, but most people can't manage that. So I want more movement and I'm determined to work hard to get it if possible. Anyway, the physios want to just get me up and sitting in a chair, but I want to walk a bit if possible. I'm still desperately worried that these new knees won't work and that I can't possibly walk on two metal joints. I try it round the room with a frame and actually it's OK. The physios say that's enough for now and to keep doing the exercises. I'm still in pain and can't sleep; some people say I'm to ask for morphine whenever I need it; others are horrified at how much I'm taking.

Operation Day plus 3
I manage to shower sitting in a chair, and to walk with sticks rather than the frame for very short distances. I'm really pleased at the quick progress, and so is everyone else. But then comes the bombshell - the consultant is delighted with my progress and says I can go home. I'm aghast. I just don't feel ready for this. I don't yet know how to manage stairs, and I'm not sure I can manage to walk the 100 yards or so from the car park on the estate where I live to my actual house. And he says they can't give me morphine to take home, and I've still been taking it every couple of hours, and I'm in extreme pain without it. I go into complete panic mode and completely refuse to go. In fact, the whole idea reduces me to tears, which is hardly surprising as I still feel very weak and vulnerable after the surgery. I'm not sure what goes on behind the scenes, but later on I'm told I can stay until the next morning, and I calm down. But I tell the physios I have to try walking the 180 or so paces I reckon I'll need to do to get to my front door; they say they think I'll be OK, but thinking isn't enough! But I try it in the corridor, and it's alright. I also try stairs, and can manage them.

Operation Day plus 4
I'm going home! I feel much better about it by now, especially as they say I can have a small bottle of oral morphine to take with me. David comes to get me, and takes me in a wheelchair down to the car. He's visited every day, bless him, even though it's nearly an hour's drive to the hospital. I manage to get myself into the front seat, and it's lovely to be outside; it's actually felt like a long four days. Back home I take my time over what feels like a marathon walk to the front door, then over the step into the house, and then it's time to sit down and rest. But I'm safely home. I have crutches to walk with, and a walker in case I need it. I sit down and rest!

Comments

  • HannahT
    HannahT Member Posts: 38
    edited 30. Nov -1, 00:00
    What a great idea to publish your 'online journal' entries. You are a great writer Helen. What you have written so far was informative and emotional.

    Would it be possible to inject some 'humour' lightness into the entries? I know there is nothing funny about your TKR experience. However, the longer I read, it started to feel a bit heavy. Just my personal opinion.

    Would like to read the finished book.

    Good luck
    H
  • barbara12
    barbara12 Member Posts: 21,135
    edited 30. Nov -1, 00:00
    How very interesting Helen,..I am sure it will help many reading it..I have OA in one knee so who knows what the future will bring...wish I had kept a diary of my THR..you have done a brilliant job of writing it.. :D
    Love
    Barbara
  • Helenbothknees
    Helenbothknees Member Posts: 487
    edited 30. Nov -1, 00:00
    Good point, Hannah; thank you. There's some amusing stuff later on in the diary, but possibly I can add more. I spent a while earlier asking my partner if he remembered any humorous incidents concerning my TKR, and he recalled some things I'd forgotten. I'll see what I can do....

    Barbara, glad you found it interesting.
  • Fionabee
    Fionabee Member Posts: 146
    edited 30. Nov -1, 00:00
    Hi Helen
    A few times recently I have found myself thinking about you and wondering if you had got started on this!
    What I've read so far is interesting,informative, & accessible, but just not enough of it. I am guessing your audience are people who are considering knee replacement or have already had it done, if that's the case, I think it's too brief and lacking in detailed information. I'm an ex nurse and maybe I'm being overly pedantic and wanting to know things that other people aren't too concerned about, plus having had my knee replaced recently, I'm comparing experiences, but at the outset, you don't know what you don't know! Type of bed (electric, could you control the up and down of head & leg sections), any aids, how easy was it to move around,were you bandaged up, drains, anti embolism gear (Sock/stockings & I wore an inflating/ deflating thing on the opposite leg, I know some of this is surgeon preference) toilet and hygene arrangements, how did the physio physically get you up and out of bed, what did they actually do with you, what specific exercises did they ask you to repeat, how long did you stay out of bed, could you reach things, what did you find useful, medication (apart from the morphine, there were a lot of Philipeno nurses on my ward, they called for all to hear "anything for your BOW-ELLS") did you take anything in with you that was a waste of time & you never used?? I'm getting a bit carried away now!
    Maybe you want to focus more on the later post op stuff. The humour bit, didn't even cross my mind, I'm looking at your book as something to inform rather than entertain.
    You have made a fantastic recovery and are such a good advertisement for the procedure. I am wondering if I had it done too soon, my last 3 or so weeks have been up & down. I Start off really well, but find I'm flagging later and sometimes having to cook a meal or tidy up at the end of the day just feels too much. Am going to see a private physio for the first time in a couple of days, initially about my back, but a have a calf & shin pain on the new knee side that is really debilitating. It dawned on me that I am using a 2.5kg weight to do leg raising exercises (Clinical nurse specialist suggestion, I saw her at my 6+week check up) maybe this is too much & i have a pair of pedals (like a static bike except I sit on an upright chair!), but I don't think I'm overdoing that side of things, who knows??!
    No knee surgery activity on here this year so far, a couple of posters have knee pain and want to discus, RA does seem to cause the most distress and debilitating symptoms.
    Good luck Helen, keep us posted.
    Fiona
  • Helenbothknees
    Helenbothknees Member Posts: 487
    edited 30. Nov -1, 00:00
    Fiona, thank you! However, the real problem is that with most of the stuff you mention I simply can't remember. I was bandaged up, but not for long, but I can't remember how long! My elastic stockings were taken off very early as my toes started going blue, but I don't know exactly when. Type of bed....again, I can't remember. Details of physio visits, ditto! I wish I'd thought of doing this a lot earlier; as it is, all I have are my posts from here, and a few of mine and my partner's memories, mainly from later on when I wasn't on morphine, which I think messed up my memory completely.

    Actually, though, I was indeed planning on concentrating more on the post-op stuff. You can find out quite a lot about what happens in hospital from the NHS website and others, but after that, you're on your own....as you found out!

    Nevertheless, despite the above, I'll see what I can add in....

    More comments welcome....
  • Helenbothknees
    Helenbothknees Member Posts: 487
    edited 30. Nov -1, 00:00