Tag Archives: Hip

Choosing a different Street

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Street

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.

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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Stoney ground.

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I’ve put off writing today thinking that really I only wanted to write anything when things were good and upbeat. I’m not good at sharing when things are not, and prefer to just hide away. However, that isn’t really realistic and, come next year at the other end (hopefully) of this, then I need to see how things really were. 

I did a bit of housework yesterday. Not much – changed a couple of beds, cleaned a shower room and swept a floor or two. However, I was so stiff in my back and hips overnight I didn’t sleep well and am sore today. I have a pain from my left hip down my leg and into my foot – and it’s my right hip that is being done first. I’m thinking – how am I going to do the exercises and walk and strengthen my right side after my first hip replacement when my left side isn’t any better?

It also feels as though there is more to think about rather than less. I know parents mean well when they want to drop everything and come and stay to look after me, but actually it feels like extra responsibility for me. I have to organise rooms, and house and food beforehand. I don’t like the intrusion in my house and feel responsible for my guests. My mother is worse than I am and I expect an accident when I can’t do anything! It seems just now that it is adding to my jumbled thoughts and workload. I still have other real work to do – even when I’m recovering – that doesn’t stop. I’m not great at entertaining people – I am happier alone – and when I am ill I have not really evolved from a small furry mammal  – I want to curl up alone in peace to heal rather than be fussed, disturbed and talked at. I don’t like attention and I don’t like fuss.

I also feel in much more pain. I can’t decide whether getting this diagnosis and knowing something is to be done has allowed me to feel the pain – to be impatient to be better, and to accept that it hurts rather than putting up with it. Or whether, because it has deteriorated so much more quickly over the last year, that it is just in keeping time wise with what has been happening anyway.

And it makes me tired – the pain. It hurts and it feels exhausting and I want to sleep and have it go away. I just want to sit and cry.

It’s not a good day. It makes me feel bad to even think it, never mind say it. I feel guilty for being so pathetic over something that is not a big thing and will get better. But I’m scared – of the operations, the pain, the anaesthetic, the trying to be better afterwards and not being able to do it alone in my own space and time. I feel guilty when others want to help and I don’t know how to let them, and it feels harder.

Tomorrow might have a different and better path.

In the Beginning

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This is mostly a journal for my own purpose to record and appreciate change. However, over time perhaps it will be found by others facing the same procedures.

In 5 weeks time I will have my right hip replaced, followed by my left hip, left knee and possibly also my right knee. The cause is arthritis. I am 48 years old.

My left knee was damaged first of all in 1983 following a fall skiing on Glen Shee – my first run down the mountain. It was not much fun being carried headfirst down a long slippery slope by two guys on skis, but better that than staying there I guess. I was in plaster for weeks, but mostly fine afterwards until I re damaged the knee running across a road in 2003. The following arthroscopy found very little cartilage and the surgeon tried to help scaring and manoeuvrability by drilling the bone (micro fracture). Things went downhill from there and there was increasing pain and decreasing mobility over the years.

Eventually it got to the stage about 6 months ago where I was feeling my right hip was worse than my knee. After conferences on consecutive weekends in February/March this year, I was in so much pain I agreed to go to see my GP – at least, I thought I would have a baseline from which to assess the conditions worsening.

I think the physiotherapist, on seeing my x rays and finding severe arthritis in both hips was as surprised as I was. I knew it was painful but had absolutely no idea it could have been so bad, and that this could be what had been causing years of increasing ‘abdominal’ and back pain too. 

It was a longish wait to see my GP about the results (a very odd appointment system which feels rather prejudiced against people who work or have families to care for in the mornings) – but was referred to orthopaedics. Another wait (simply because they cancelled my appointment at the last minute and failed to make another one until I queried it a week later) but was told that the arthritis was sufficiently severe (about 2 mm of cartilage in my left hip joint and less that 1 in my right when there should be 7mm) that they would have to be replaced. Subsequent MRI of my left knee showed no cartilage at all and a variety of other issues too. Lots of nice bony spurs everywhere. At least I wasn’t imagining the pain!

I’d honestly believed I would be told I was too young, there was nothing wrong with me, there was nothing they could do – lose weight and come back in 20 years ….. and here I am with a date for my first op with the others to follow, if all goes well, at 3 monthly (roughly) intervals. By this time next year I’ll be bionic!

So, here we are at the beginning – and off we go on a new adventure.