Tag Archives: Hip replacement

I’m on my way ….

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At the end of April, exactly a year since my hip was removed completely, we moved our bedroom back upstairs. The week before, buoyed by being able to get over the front doorstep on my own, I decided to try the stairs. Now, with help from my husband, a crutch and the bannister, I get up the stairs and down again a couple of times a day. I can get into my own shower – bliss! – albeit with a shower stool and a bit of help.

The study, where we slept for the past year, on the other hand, is a tip – full of boxes of a year of – well we’ll pack it away and sort it sometime – stuff.

Now I’m back at the gym too. We went a couple of weeks ago just to see if it was possible. I take myself into the changing rooms and to the pool side for a swim in my wheelchair (Short story – I fell a couple of weeks ago while using crutches at home on wet ground. Typically there was no one around and I didn’t have my phone). I can get down the ladder into the pool and swim. Front crawl and back crawl only now. It was odd at first having one float leg that did nothing, but I’ve got the hang of tensing muscles to hold it in place now. Breast stroke isn’t possible with only one leg – I get nowhere!

In the gym itself we had an MOT. Outcome – couldn’t get much more unfit. We also had a PT session to show us the machines and build a programme. Treadmills, cross-trainers, bikes (even recumbent) and rowing machines are out, so my warm up is bouncing on a swiss ball with a pair of 1Kg weights in my hands. It’s hard work! This is followed by shoulder press and arm exercise machines and an abs trainer. 3 x 15 repeats. I did think I should be doing some leg exercise, but by the time I’ve been up and down my own stairs twice, then up and down the stairs at the gym, I reckon I’ve done more that enough of that!

I come home tired but happy. A man at the gym today said to me that it was good to see someone in my position doing something to keep fit. It’s more like getting fit again – and I miss not being able to do the bending and stretching of yoga and Pilates, but I reckon getting whatever parts of me I can fit again is a bonus. 1498494821_fitnes

 

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Choosing a different Street

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It has been some time since I last wrote, and much has happened in that time. I felt quite low after the dislocations in October 2015 and was waiting for some surgery to revise the failed hip and make life better again. Sadly this was not to be.

At the end of February 2016, almost a year to the day, and once my blood pressure reduced to an acceptable level, I had revision surgery on my left hip. Unfortunately the wound did not heal and 10 days later I was taken to hospital with a serious joint infection. I was in hospital almost a month with e coli mutations and on IV antibiotics through a PICC line. Low Hb meant doing further surgery was difficult.

It was April, and after a month of IV antibiotics at home and daily dressing changes for a copiously weeping wound with 4 sinuses, I went back into hospital for a Girdlestone procedure where the hip joint was removed completely. My surgeon put in a spacer to still give me a joint, but unfortunately this dislocated before I even got out of bed post x ray 48 hours later. Also, there were Gentomycin beads to try to target the infection. We looked forward to three months later when, hopefully, all would be well and a new joint put in.

In this time I kept quite optimistic and we even went as far as to book a holiday cottage which was wheelchair friendly. My bedroom had been moved downstairs to my office (The Growlery) and I had the company of my husband and mother-in-law for much of the late spring and early summer.

This also did not turn out as planned. Another sinus resurfaced and at the end of August I returned to hospital with a whole new set of infections in the joint – Klebsiela and Strep B. and another lengthy stay following surgery to remove the dislocated spacer and remaining beads – those that had not exploded all over our hall floor the night before, resulting in yet another trip in an ambulance. This time we had to cancel our holiday and I fell back into the black hole.

We hoped for three months of infection free and antibiotic free from the end of November, when the IV antibiotics finally stopped again and a promised date for surgery to put another new hip in and get mobile again. This is also not to be. I have little bone, tissue and no adductor muscle left after the many surgeries to clean out this joint. My surgeon is cautious at this stage about the increased risks of infection with no muscle protection, the difficulties of surgery and the possibilities of things going wrong at my (tender!!) age. He wants to do a biopsy to find out why fluid is yet again building up in that space, but won’t attempt a new joint again for at least another three months. This is the fourth lot of three months we are waiting.

Perhaps three months seems a sensible time for him to think we can wait. However, this time we are holding out little hope for anything being done anytime soon. Hopes being dashed so many times have left us all drained. So, with that in mind there are two choices. Go back down the same road and risk falling into the same black hole again, or choose a different road.

I think a new street, with different views is in order. Maybe it is a road I continue to take in a wheelchair. If so, then we need to find a house I can access on my own and not be confined to bedroom, living room and kitchen. I can’t even get in a shower without my husband – and that is in the downstairs guest room – and haven’t seen the upstairs of my own house since April last year. I need to live somewhere where I can get out on my own, with no steps and no need to be lifted in and out, so completely reliant again on my husband. He is at work 27 miles away full time, so a lot of time is spent alone. I have businesses I can partly run online, so will concentrate on those parts. I will try to write every day and maybe one day have the courage to write the books that I have thought of for so long. I will look for holiday cottages that have wheelchair access so we can go away together this year. It may not be Italy as we hoped and it may be booked the weekend we go – just in case! – but it is part of the plan.

So this new street has estate agent windows to look into, travel agents, books to read and research, people to talk to online and anything else that will help me lift my mood and look forward to my life as it is now.

The black hole

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I came across this poem the other day.

Autobiography in Five Short Chapters

By Portia Nelson

I

I walk down the street.
There is a deep hole in the sidewalk
I fall in.
I am lost … I am helpless.
It isn’t my fault.
It takes me forever to find a way out.

II

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place
but, it isn’t my fault.
It still takes a long time to get out.

III

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in … it’s a habit.
my eyes are open
I know where I am.
It is my fault.
I get out immediately.

IV

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

V

I walk down another street.

Copyright (c) 1993, by Portia Nelson from the book There’s A Hole in My Sidewalk. Reproduced with kind permission from Beyond Words Publishing, Hillsboro, Oregon.

I’ve been walking down other streets for a while now. Cheerfulness Street; Hope Street; Gratitude Street; It Is What It Is Street – always finding myself at this crossroads and choosing a different way. It’s always been there lurking though. A few days ago I suddenly found myself back here though. I would have chosen to walk around the hole perhaps, but last night I fell in. 

I’m not inexperienced – I have steps in my hole – I can climb out usually, but it feels too enticing to just stay here in the dark, and the steps to get out are slippery.

It didn’t take much to tip the balance either. A couple of weeks of not getting out at all (on top of four months of being stuck in the same house, same room, same chair day in day out), my husband away at the weekend so extra time on my own, a reminder that my weekend might have been broken up by visitors – except I don’t know anyone here and so don’t see anyone, and my husband announcing he both was going to be spending time indefinitely further away from the work site we expected and that he had to be there for an earlier meeting today. Just 1/2 hour extra time alone – but that’s all it took. The little jab that lost me my balance and pulled me in. The realisation – the truth of the situation I am in – I am housebound, alone and isolated. The only people I have are my husband at work, who could do without this, my son who I am supposed to be carer for, and the cat who only  really cares for whoever can bend down and feed her. I was even shouting at her yesterday for running in and out of the house, making me get up and open and close doors. The truth is perhaps that I was envious that she could run in and out of doors and visit different places.

It’s not a good week. On Monday I was supposed, finally four months after dislocations, to have the first of my surgery and have the hip that repeatedly dislocated revised. The metal levels in my blood, the damage to both hips seen on MRI, the repeated dislocations, all added up to getting it, then the other hip, out as soon as possible. Except my blood pressure is unexpectedly dangerously high. No amount of – but it could be the metal causing this, you could do a spinal so my BP drops – was going to sway the surgeon and the anaesthetist.

So here I still am – still waiting, still on my own, still not able to complete an entire task on my own, still on hippy rules, still waiting for that next misstep that dislocates one or other hip. Still in my black hole looking for the energy and motivation again to get out.

Or even just a friendly helping hand.

Dislocation nightmare

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Our parents were here for a fortnight. We went out visiting places and all was fine. They went home on the morning of the 16th just before I saw a client – all well so far. I took my son to the gym in the afternoon and decided to do my Pilates and physio exercises on the mats instead of walking. My left hip has always felt weaker than my right and so I try to keep the exercises up to strengthen it, even though they never seemed to be progressing much. That hip has always been a bit clunky too, and a few weeks ago I bent down to feed the cat and said to my husband there was something wrong – it felt as though it was popping in and out of the joint. Anyway, it clucked quite a lot during the exercise, but felt better once I’d finished. We drove home (in the mini!!) I went up to change out of gym clothes, bent down to take off my socks – and my hip dislocated.
It was quite a farce really. My son, who has autism, went next door to get my neighbour who is a nurse and she phoned for an ambulance. My quite small bedroom, with me on my side in 18 inches between the bed and the wardrobes and 2 ambulance personel and 2 paramedics in my room trying to give me morphine and work out how to get me downstairs, with my son carrying on as normal and getting his tea and the cat popping in to see what was going on. The concern was that, instead of 5 minutes away that day, my husband was 50 miles away and uncontactable until at least 4pm. As it turned out my son wasn’t able to get him until after 6pm. The neighbours took it in turns to come and check on him until he got home.
I had surgery on Saturday morning to put it back in and then found I had ‘bed rest’ but no explanation scrawled across my notes. I had been hoping once it was back in I was going home! Especially as I was on a general surgery ward and not orthopaedics, so no one knew what to do with me. Sunday morning I was visited finally by the surgeon who gave me the ‘good news’. Firstly because it had come out once, it would be more likely to do it again and secondly when they tested it in theatre in 2 particular positions it popped back out every time. I have an unstable hip. I saw a physio, they decided I was fine to go home but would need follow up. I was told if it came out again it would need to be a complete revision (replacement) of the hip.
Monday, we’d had supper, my husband took off my boots for me, I moved myself back on the settee – and it came out again. Almost a repeat of Friday as we don’t have a great deal of space in our living room either – too much ‘stuff’!! The ambulance crew eventually got me out and back to hospital where I spent the next 3 hours or so on a trolley in the corridor and the following 10 hours on the same trolley in a cubical. They certainly have some issues! I saw a doctor who was saying that late hip dislocation was usually down to soft tissue areas and I rather took offence (must have been the morphine!!) as I took it that he thought I hadn’t been doing any exercise with it and had allowed it to become weak (as it happens it may be the complete opposite – more of that in a minute), and they were just going to put it back in again and send me home. Not being great with pain I was rather afraid of this as it felt that it was just going home to wait for it to happen again – and in many ways it is. 
Tuesday, after an hour and a half wait for morphine, I was taken to a ward and told that I was not having surgery after all that day. I promptly burst into tears – I’d certainly lost my sense of humour by then. It did mean I could be consoled with a baked potato – until Sister turned up ranting because another Sister had a go at her – I was supposed to be in theatre and couldn’t go now. A doctor had quiet clearly written in my notes ‘no surgery – can eat and drink’ (I saw the notes) but had misunderstood when I had been talking with the senior surgeon that morning and thought they weren’t doing the manipulation after all but waiting for a replacement. I finally got to theatre on Wednesday and had it put back in. The up side, if there is one, is that there was a hip specialist able to pop in and I am now under his care. Trouble is, he wanted me in hospital until MRI scans and blood tests were done and I had supervised mobilisation, and possibly a brace.
None of that was possible. On Thursday everything went wrong on the ward and they desperately needed the beds. Two hours before my 24 hour bed rest was up I was dressed and sitting in the corridor waiting for my husband to pick me up while they prepped my bed for someone else. Physio said – walk unaided, yes you can swim, do your exercises, I guess you’re fine with stairs. Consultant said – crutches, no swimming, we’ll take blood, try to keep the hip in and I’ll see you in my clinic next week. As an outpatient rather than an inpatient I’ll have to wait considerably longer for the MRI. Mmmm!
The issue it seems is indeed probably soft tissue. I had a metal on metal Birmingham Hip Resurfacing (BHR) as these were being done for younger people who were still going to be able to be fully mobile. There now seems to be some evidence that the are failing in women. The metal when used is rubbing together and producing ionisation, found in the blood and causing toxicity issues (I had other problems with nerve pain and shakiness in my arms, which may now it seems be linked) and erosion of the soft tissues around the joint. This means the hip will not stay in and I am on extra strict hippy rules – no bending, twisting, allowing less than 90 degrees between my legs and torso, allowing my left leg to drift anywhere close to the centre of my body – or it will come out. Other issues involved might be my hyper mobility in my joints and also the way it was put in in the first place. Any and all of these might contribute and my husband has written to the surgeon who did the replacements in the first place.
So my husband is doing limited hours at work. My son can’t get out except for their photography course together. I’m in a chair trying not to move and doing as much of my work as possible by e mail. The joys of the hippy journey!




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Two years down the line.

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It’s been some time since I posted and thought it about time I considered my progress here. 

I successfully got myself off the Tramadol completely. It was an awful month and I felt unwell for another month after that. Not helped of course because when you come off something it needs to be replaced by something else – and that wasn’t there. The effects of the Tramadol made me feel still as though I had a bad flu.

Help was at hand eventually. As nothing surgically could or would be done about my spine (and I don’t much want yet more surgery anyway) I was sent by my GP to Physio. After a few sessions I was referred on to Dr Graeme Brown, who wrote a book I already had on my counselling shelf http://www.amazon.co.uk/How-Liberate-Yourself-Pain-Practical/dp/1899398171/ref=sr_1_fkmr1_1?s=books&ie=UTF8&qid=1439909927&sr=8-1-fkmr1&keywords=graham+brown+pain

and then to his physio team who put me on a functional restoration course. I was sure if this meant I was going to be stuffed, upholstered and auctioned off, but I was happy to give anything a go. It was an assessment, twice a week for 3 weeks and then a final assessment to see what progress was made. Five of us started in week 1. By session 2 there were 2 of us. Not a great start! At one session there was only me. So much for the group experience. The course was a system of exercises to show whether we were responding in a boom or bust fashion and to learn how to pace ourselves to increase activity, in addition to building flexibility and strength. There were talks on realistic goal setting and it was all very much CBT based. However, for me it worked. It gave me permission to not give up and decide I couldn’t do things because if I worked at it then – just perhaps – I could.

I could walk about 500m with sticks and swim 1km. If only I could swim everywhere! I built up little by little with walks with my family, swimming weekly and doing a mixture of the physio exercises with Pilates to make a programme of my own.

Cutting a long story short then.

I do seem to have reached a plateau where I get to 2 – 2.5km and don’t seem to be able to improve. However, I just did 2.3km this afternoon without any sticks. Admittedly I was limping by the time I got home, and this is not necessarily a good thing, but I still did it. I find after about 800m I can feel my left hip swelling. My left side continues to be noticeably weaker than my right and I don’t seem to be able to progress this strength with exercise. That is also the side affected by the nerve pain from my spine and had both a hip and knee replaced.

We took our holiday on our boat. Only a week out of the two, but I walked between locks and managed lock paddles and gates too – often twice each when they were not set in our direction. The worst day was the mistake of walking 2/3 km – a big misjudgement on the map – which wouldn’t have been too bad had it not been in the middle of working through 9 locks.

I can climb the stairs without much thought – usually without holding the banister, unless I am tired. 

I have been doing some gardening, albeit much more restricted than a few years ago but considerably better than more recent years.

Pain is not bad – certainly not worse than it was on Tramadol. It was replaced with Naproxen which I take with Paracetamol. The Paracetamol seems to enhance the effect. I take 2 Amatryptaline (I know that spelling is wrong!) at night to help with the nerve pain. It does seem to be better, unless I overdo things.

There are down sides – I can feel arthritis pain in other parts of my body – further up my spine aches badly and wants to bend me forwards when I walk, my left shoulder and down my left arm, and more recently my hands and feet – especially hands, have become acutely painful and I have take care of them now. Sometimes I watch them pull into spasms I have to gradually ease out of them again.

But what would it be like if I hadn’t had the replacements? It has been hard, especially having them so close together. It made me very weak and unfit and it is a lot to pull back from. But two years down the line I can do these things. They might not be much more than before the surgery – but it’s certainly not worse, and the experience of my upper body tells me by now they would have been much much worse. Two years ago I was in a wheelchair much of the time if I got out of the house at all. Now I’m walking to the river and back with my son.

It was worth it!

Knee rly there!

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Oh dear – a terrible title 😦

Three days to go. I had blood taken this morning. That always makes it more real! It shows you are having too much done when it is the same phlebotomist every time and, not only does he recognise me, again, but remembers that incident last time when I left his room without a sticky plaster and bled down the corridor.

I’m having days where I think ‘what’s the point’ and other days where I can barely touch my knee, never mind get comfortable, and think ‘well it can’t be any worse’. Of course for the first few weeks that’s exactly what it will be!

I’m just at the point where I can walk up (though not always down) the stairs with alternate legs, although I admit there’s still quite a bit of leverage on the banister rail, and can get onto my right side in bed and sometimes fall asleep there, though not my left. It’ll be on my back again from Monday. Just as well I’ve had a year of that now and I’m used to it, but I also have pillows under my knees to help my back, and I won’t be doing that with a knee kept straight.

I’m not sure what to wear either. Thank goodness it is summer again or I could be getting very cold. I’m reading that people are not able to tolerate jeans against their scar for a very long time and even a skirt brushing it can be sore, so a long summer in shorts I think. Not a pretty sight!

I had wanted to get my legs tanned pre op to compensate for the long surgical stockings for the rest of the summer, but it’s rainy and going to stay that way all weekend I believe, so the tan I have is all that I will have, unless I ignore my surgeon and leave the stockings off. There’s a reasonable chance of that. I’m reading that there is little evidence to say they help with reducing DVT, especially as I will also be on anti coagulants for weeks, but they do apparently, and I can see this, help to reduce swelling and therefore presumably pain. I have 3 ice packs at the ready to help there too.

The rest of the weekend will be spent planning what to take with me again. Not much has changed from last time, though the laptop may go with me this time with DVDs. Having said that, if it is with me there is the temptation to work since I will be able to receive and send e mail and get on with my seriously tedious essay – must do something about that! I really should take the opportunity to rest, read non work books and do my knitting! Last weekend I started to put together the hippy blanket – 38 squares. I think just a bit bigger – 49 for a square or 48 perhaps if I make it rectangular. Oh decisions decisions! 🙂 It’s quite bright though – reds, purples and had green with some coloured mix wool in there too. I don’t think my husband is impressed 😀 But it is certainly Hippy!! 

 

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Hippy 1st Birthday

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It was the first birthday of my right hip yesterday – 48 and a bit years behind the rest of me. birthday cakeThe celebrations started with 60 lengths of the swimming pool followed by dragging my hoola hoop, not used for some time, out of the garage and into the sunny garden where I at first tentatively tried it out to see if I could still do it. 100 rotations both clockwise and anti clockwise later I reckon those hips are up to it again! After supper there was an extra walk around the football field, mapped by map my walk – although unfortunately by this time I was already very tired and it was a rather painful walk back, a sleepless night and a very stiff me who got up this morning.

I had thought we might go out last night to celebrate. I suggested to my husband the night before that we might go out and reminded him that it was my hip’s first birthday. I guess either he didn’t take me or the life changing thing for me that is my hip replacements and arthritis seriously because he conveniently forgot. I was a bit – ok a lot – upset at this, but I was certainly not going to remind him again if he couldn’t be bothered to hear me the first time. This happens a lot. Work seems to take priority and while it pays the bills and I contribute very little, it does appear to be on his mind considerably more than we are.

The thing is I don’t really know how to explain to him, or anyone else, what this is like. As I’ve said before, my mother has just decided I’m like her and she just had to put up with it so so do I, so she rarely asks about me and if she does mention it she tells me what I am like and doesn’t stop to listen to me. I accept I may shut people out and so they don’t ask me, but to tell them how I feel makes me vulnerable, and if I’m vulnerable then I’m hurt when they don’t hear me, and so rather than risk that I hide when what I would really like is someone, my husband for example, to say – yes I know this is hard, let’s do this or that to help you.

Cooking for example in the evenings. It hurts to stand for long, so usually I prepare a meal throughout the day just to finish later. I work from home and rarely go out anywhere. He goes out to work and will also have nights out with work occasionally, so to go out for me is a huge treat, but not for him. So a night where I have thought we might go out and then don’t not only is disappointing in him forgetting or not wanting to go, but I then have to prepare a meal and clear up all in one go and am in pain.

I never really understood previously that I was in pain. It is a strange thing. I read about others talking about agony, but it’s not like that for me. In some ways it is more insidious. I wondered for years if I had chronic fatigue or a constant flu, because that is what it is like. The ache in my bones is just like a really bad dose of flu. The fatigue that comes with it makes it difficult to concentrate and is trying to my patience. My husband would ask why I was huffing and complaining and I would say something hurt and he didn’t understand. I didn’t really understand myself – I was just exhausted. The diagnoses I have had have been a revaluation in understanding what is wrong – that there is something wrong in fact – and for my husband to realise that there may be a reason for my not wanting to or being able to do all the things I used to other than me just being unsociable or difficult. Now a bit less is expected of me. Less of a label and more of a signpost.

This has made my husband sound awful, and that’s not true, but he puts a lot of pressure on himself over work and money and rather takes me for granted because I’m always here. The pressure on him and my inability to look forward any more and see a way of seriously contributing makes me feel guilty. He also has a knack of talking now about not being able to do things anymore as though somehow with my diagnoses my life is over instead of just coming up with different things and ways around it. But that’s another story – even though this is the one that kept me awake all night. 

So I would have liked to celebrate a bit more than I did. For me having my joints replaced and having a chronic pain condition that is getting worse is a huge thing. But I guess that’s just me! cat_animal