Thursday, 31 March 2016

Patience Is A Virtue

The twelfth week into my recovery saw me unwillingly reaching a quarter of a century and turning 25. I was incredibly happy to have my parents come down for the weekend to spend it with me; although unable to do much, it was so lovely to have their company; eating carrot cake, drinking tea and watching films. It really lifted my spirits and I was spoiled with presents and love. 
 

Unfortunately, during the same week, I met with the extremely sharp lateral thigh pain that I'd previously had a few weeks before and it prevented me from weight bearing properly. I let Alison know at hydro and, thinking it was a tight ITB, she mentioned sending me for a soft tissue massage; however, when she checked it at the end of the session she found it wasn't anywhere near as tight as it had been and we came to the sad conclusion that the pain I'm getting there is plate irritation. Although I'd already assumed it, due to the way it felt and it being in a specific spot, it wasn't great to hear. She changed her mind about the massage as she considered it would only cause more aggravation than anything else. I'm really hoping that this plate isn't going to be greatly problematic throughout my recovery, but I do have a feeling it's going to continue to be an issue - because of the way it viciously rubs against the muscle that's lying over the top.

The following week I had an x-ray appointment. This was to be the first time I would be venturing out alone. Having not yet mastered the technique of actually getting into the taxi by myself with a pair of crutches and a backpack in tow, I managed to drop my phone as I was closing the car door and smashed the screen! The feelings of liberation and accomplishment for getting out and about by myself speedily changed to feeling rather foolish and reckless causing nearly £100 worth of damage - just trying to get into the back of a car... 

On arrival at the radiology department I let them know I couldn't sit for long and fortunately I was called straight through without having to wait! Amazing! As well as the typical x-ray view, they also wanted to get the osteotomies from lateral view this time. When all was done, I asked the radiologist if I was allowed to have a look, as I was desperate to know if my femur was healing and she let me to go into the 'booth' to have a peak. I was very excited to see some fluffy, spongy bone growth on the usual view compared to my last x-ray, but was also quite confused to see a huge gap on the lateral showing no visible growth.

The following day I had what I think was my last hydrotherapy session. As well as the usual step-ups, one leg dips and float work, Alison also had me cycling my legs with a pair of flippers. It looked like it could have been fun, and I'm sure it would've been if I didn't have the aggressive groin pain screaming at me the whole time. At the end of the session I was told to book a review appointment to look at sending me over to the gym for land based PT. She mentioned putting me into one-to-one sessions as opposed to the group ones, I was grateful for that as it’s fair to say I’m quite a complicated patient with everything I have going on.

A couple of weeks ago I had my second check up with Mr Politis - once again I was lucky enough to be taken straight through without having to sit in the waiting area. He seemed fairly pleased with the progression and said that my pelvis is healing ahead of his expectations, but my femur still has a long way to go. As I had seen the previous week, the straight-on x-ray shows some slight bone growth, but on the lateral view there's still a noticeable gap. Femurs are certainly slow healers, but I'm holding onto the positivity that there is at least a smidgen of bone growing and he's not classing it as a non-union. He wants to see me in another 6 weeks time and said if it is still not looking great, I will be given an ultrasound bone stimulator to wear. He told me to take it easy, refrain from any vigorous rotation, and to stay on the crutches to support the femur for the time being (not that I'd be off them anyway due to the pain, muscle weakness and significant limp I have going on). I asked if it was normal for me to still be reliant on the crutches at this stage and he assured me it was very normal. 
 

When I mentioned the plate irritation he said it's inevitable because of the muscle rubbing over it – I’m somewhat disappointed about that as this chunky plate is going to be a part of me for at least another six months. I broached the issue of the awful groin pain and the labrum, and his response was that it's still too early to know which is scar/soft tissue pain and which pain is coming from the labral tear. I also mentioned the bony protrusion I now have at the front of my hip that bothers me when I lie on my front or accidentally bump into furniture, and he spoke about possibly moving the soft tissues around when they go back in there to remove the screws. I wish I'd asked more about that as it has left me wondering since just what exactly he meant.

My knee is still incredibly painful, so I questioned that again; the reality is that until I'm walking properly and at full strength it's difficult to tell if it's going to be a problem. I certainly see a bit of valgus knee going on when I look at my leg, and can't deny that I do worry about needing yet another osteotomy on my right side, but I've got to just take everything one day at a time and focus on this recovery. He reminded me that the recovery of these surgeries can exceed a year and that I'm still in the early stages of mine...

I’d also noticed an unusual looking bit of bone on my x-ray (fifth screw down) so I asked him about it whilst I was there. Surprisingly, he told me that it’s where a screw had broken during the procedure, which I found an amusing little fact.

Last weekend was pretty exciting as I managed to bake some blueberry muffins! As much as it pains me to stand in the kitchen for any decent amount of time, it was a great accomplishment as I really miss cooking and baking. Sadly, the week following that feat was especially tough as I was unable to weight-bear properly - again. This time it was because of an immensely sharp stabbing pain in my groin. Each time I put over 50% of my weight through my leg, or tried to lift it whilst lying down on my front, it seemed to severely set-off the pain, which in turn made me really apprehensive about using my leg, as it was such an unbearable shock of pain that made me screech out loud when it caught me off guard. The only way I can think to describe it is being comparable to the dentist drilling through a nerve in your tooth, but on a greater scale!  Having it for nearly a whole week made me feel like I'd done some pretty serious damage and I was constantly trying to figure out what it was. My guesses ranged from a ligament or tendon issue, to compression of the femoral nerve - as it sometimes followed the line of that nerve down into my inner knee. I became really anxious that it was a disc in my back causing it, as my back has been particularly bad these past few weeks and I’m always getting nerve pains down my legs due to the discs that are ‘out’. I really felt as though I was regressing, but I rested, iced and kept off my PT exercises for a few days - and luckily it seemed to slowly settle down.

A few days ago I had my physio review with Alison. I let her know about the awful week I’d had with not being able to put any weight through my leg and she speculated, by the way I described it, that it sounded like I’d strained a muscle. She did say there could be a bit of localised femoral nerve compression going on too, but that it didn’t sound like my back, which I was so relieved to hear. She was surprised I didn’t do anything in particular to trigger it, but told me to take it easy if anything like that occurs again.

She was impressed with how my muscle strength has progressed since my last review, which I was really happy to hear. When you’re living with this every day, it’s very easy to be blind to developments, so it’s delightful for someone else to give me that reminder that I am moving forward - no matter how slowly. However, because my femur isn’t healed yet and I’m still on reliant on crutches, she can’t send me to land based physio yet. “You’re too good for the pool, but not quite good enough for the gym…” So I’m stuck in limbo at the moment and have to wait until I’ve seen Mr Politis again in mid-April to see how my femur is healing before I can have another physio review.

For the time being I just have to continue with my home PT exercises and stretches. I mentioned finding the clamshells a bit problematic for the hip flexors and she told me I could give them a break for now, but to continue with everything else. I queried the vast amount of swelling still developing in my leg and she said it is to be expected, especially due to still having a broken bone and EDS. I still have to work on my external rotation, as it continues to be very stiff within the joint in that direction - I have been trying to stretch it, but it really does create a very sharp pain in my groin every time I do it. I mentioned the ghastly, burning groin pain that has not diminished and she told me to keep in mind that I still have a labral tear, which to be honest, seems to be in contrast to what my surgeon says. I did say that it feels like Mr Politis is quite dismissive of the labral tear, but she said at the moment his priority will be to focus on the osteotomies healing.

Over the last few weeks I’ve definitely been able to see and feel the effects that the general anaesthetic and major surgery has had on my body (and they typically say that 3-4 months out is when it all tends to happen). My hair is falling out, my nails are in an appalling, brittle state; my skin is quite bad and my mood has been fairly low. My eyesight has also worsened since surgery and isn’t yet showing any signs of improvement. I did ask Mr Politis about that and he said that, although he is no expert, he’s never heard of eyesight being affected by surgery, so I’m unsure what’s going on there.

I have to say - at this point in recovery - I'm feeling very frustrated and a little downbeat. Everyone says that this is the slow and frustrating stage and they couldn’t be more right. It feels as though it's been a very long time since the surgery, but in reality this is really only the beginning of it all and I still have so far to go - and that's just with my right side. I'm tired of not being able to just get up and freely walk across the room; fed up with my crutches falling over everywhere I rest them; exasperated by not being able to just go out to do the shopping, and especially devastated that I still can't sit down without major pain. The prospect of living with significant pain for a while longer, or until the labrum and impingement are addressed is extremely daunting, especially as I'd hoped that the majority of this sharp, burning groin pain would be gone by now. I do know that a lot of it is likely to be hip flexor pain as well as torn labrum and FAI issues, (and like Alison has told me - it’s near to impossible to distinguish between the two) but because it feels identical to what I was experiencing pre-op, I just have a feeling it’s going to continue to be a problem until they're addressed.

I think I had anticipated that by the 3/4 month mark I'd be further ahead than I am. If nothing else, this has certainly taught me that you can't actually make assumptions for a recovery like this, as it will typically never go the way you thought, and that just makes the situation more difficult. It is challenging, trying to remain focused and remember how far I've come, instead of fearing the road ahead, although I know how important it is to stay positive and celebrate the small achievements. It is rather difficult to ever imagine having a ‘normal’, pain free life. I thought I’d ‘maxed-out’ on patience already, but it seems I’m going to have to dig a little deeper to find some more. 
 

Saturday, 20 February 2016

On The Other Side

It wasn't my initial intention for my subsequent update to be so many weeks after my operation and thus, quite a way in to my recovery! I can’t believe that 11 weeks have passed me by… Originally, it was my plan to write regular, ongoing updates, but for the first couple of weeks I really didn’t feel up to it (or anything), then Christmas and New Year came around, and since then I’ve been dealing with some severe ‘brain fog’ - consequently this post has been weeks in the making; it really has been so difficult to focus on very much (other than pain, movement and scars!).

In short, all went to plan and my recovery and progress have been going well, albeit, as expected, very slowly. To date, the ‘journey’ has been incredibly emotional, (as well as physical) - and will no doubt continue to be for quite a while longer!  I offer my apologies if you are reading this whilst preparing for this surgery, but everything I write here is completely candid and frank; unquestionably this has been the toughest thing I have ever been through.  Nonetheless, here I am, and despite pain, it feels wonderful to be on the other side and no longer to be experiencing the pre-op anxiety which can be such an upsetting part of all of this. 


Looking back over the past couple of months, I have so much to recount, I’ll attempt to break it down to some degree.

Surgery Day


Arriving at the Royal Orthopedic Hospital for 7.30am, I  expected to be waiting for quite some time, however as soon as I checked in, I was whisked straight into a room for some pre-operative questions and was greeted with the news that I was first on the list for operations. I was welcomed by the very warm smile of a lovely girl who introduced herself as Phoebe, a trainee medical student on placement from University, and asked if I would agree to her observing my surgery and stay with me for the first few hours of the surgical process. It would be the first procedure she had ever seen and I was happy for her to be there as long as she felt she could stomach it all. I was quite taken aback by her bravery!

Following thorough questioning and what seemed like reams of paperwork, I was introduced to the anesthetist who was very friendly and welcomed any questions from me. I was relieved to hear that he was familiar with Ehlers-Danlos Syndrome and he mentioned it was in his family too. Mr Politis also briefly popped his head in to see how I was, appearing to be really happy and ready to ‘perform’, which was reassuring. I was told each procedure should take roughly one and a half hours.

I was passed over to another nurse who accompanied me (and my dad) along to prepare for theatre. I made a teary goodbye to my boyfriend and mum. My fear had totally reached its peak and the trembling kicked in as I was taken into a cubicle and asked to change into a gown, a generous pair of paper pants and the surgical stockings, before being given the go-ahead to proceed to theatre.

The atmosphere was very tense, not helped by the room being very small and seemingly crammed full of people. Looking around, trying to ease myself, I happened to read the labels on the drawers in front of me that were obviously full of surgical equipment, needles and such. I immediately stopped scanning the room!  A cannula was inserted into my hand, and I was given something to calm me just before the general anesthetic was administered. The anesthetist nodded towards the digital clock on the wall that read 09:17 and said that by 09:19 I would be fast asleep. The last thing I remember was watching the digital clock in the corner of the room & saying, “It’s 9.19 and I’m still awake…”

The next I knew, I was dreaming about making a cup of tea at home as I slowly regained consciousness and realised my surroundings. I was awakening as I was being wheeled along the corridor into recovery; feeling surprisingly chirpy and delighted to see Phoebe’s familiar face by my side as we parked up. The nurse looking after me at this point, Lovejoy, gave me oxygen and was impressed with how awake I was. By now it was almost 4pm, having been in theatre for a good six hours. My legs were numb with a big wedge in between them, apparently in place to prevent me from crossing them. The epidural was definitely working well as I was prodding my left thigh asking Phoebe what it was; she actually looked under the blanket to check and reported back - it was indeed my leg.

I was incredibly thirsty and Phoebe was kindly supplying me with plenty of cups of squash. For some reason I couldn’t stop talking - about anything and everything; totally chatting the poor girl’s ears off, (which is not really like me). I presume the drugs were working well! I was asking how the surgery had gone; whether it had ‘freaked her out’; what music they listened to – they apparently didn’t listen to anything (even asking if I broke any wind – I didn’t, thankfully!). Phoebe was totally in awe of the surgeons and their intricate work - even saying she wanted to become one as she was so impressed. She told me that Mr Politis led the Femoral Osteotomy followed by Mr McBryde leading the Triple Pelvic Osteotomy.

A member of the anesthesia team very kindly offered me his phone and asked if I wanted to call my dad as he knew he would be waiting to hear how I was. I rang, full of cheer, not as if I had just woken up from a six hour operation, and I ascertained that he was surprised and somewhat relieved to hear from me.


 

At this point I was wheeled down to the High Dependency Unit. For the first few hours I felt quite alert, content, and in no pain at all (obviously as ‘high as a kite’). It was a huge sense of relief that the worst bit was over and I had made it through! It was also really lovely to see my family and they were very happy to see me (after expecting me to be in theatre for only three hours – which turned into six!). I realise that this whole journey is taken on by the whole family and not just as an individual; going through something like this really does affect everyone who is close.

“Would you like chicken and leek pie or vegetable soup?” My stomach did somersaults. I think I thought out loud, “Who could eat pie right now?”  Reluctantly, I opted for the soup and eventually sipped a little through a straw.

Mr Politis came to check on me and was very pleased with how the procedures had gone,  revealing that the plan was to first carry out the FO and leave the TPO if I bled too much, as apparently people with EDS sometimes bleed more than usual, (which is the first I’ve heard of that). Thankfully, both procedures went ahead as planned. I asked him about the condition of the labrum, but he said that they didn’t get to see into the joint itself. In amazement, when I looked down I noticed that my resting foot position was different to usual. My left was doing its usual outward rotation, but my right foot was pointing upwards! It was exciting to see.  I also made the realisation that I went in with a pair of pants on and came out without any on…


At this point, I still felt spirited - requesting cups of tea - but as the night wore on my buoyancy began to diminish before the onset of nausea crept in (rather rapidly). I had not been given a buzzer so found myself suddenly yelling out, “Can somebody help me? I’m going to be sick!” Before I could finish the request, I’d thrown up all over myself and my bedding. This was when I realised how much of a bad move that was, as I was barely able to move in any sense to assist in being changed. My hands and face were given a quick wipe before leaving me for over an hour. Lying there with vomit embedded in the dressing of the cannula, down my gown and blanket, along with the constant vile smell, I quietly awaited someone to freshen me up. Finally someone arrived with new sheets, but in order for them to be fitted I had to be ‘rolled’. I quickly learnt that this word was bad news. It meant that two people had to turn me onto my ‘good’ side by moving my legs (wedge still in place), as I grabbed onto the bar and held myself there whilst they did what they could to change the sheet. To say that this was incredibly uncomfortable is an understatement!


That first night in hospital was a strange one. I was beginning to become aware of a dull ache in my hip, but it wasn’t anything too extreme. Everyone was telling me to rest, but I couldn’t get to sleep at all due to the strange surroundings and all of the new sounds bleeping around me in every direction. It seemed whenever one machine went off another person’s would start, and a chain reaction of beeps around the high dependency unit went on constantly.


Hospital Stay


The next morning I was given a wash and was very happy to be passed a toothbrush. The pain level had risen in my groin, but was still fairly manageable. They kept lifting up my blanket and spraying me with a cold spray to check how and where the epidural was working. At one point it had risen too high up near my chest so it was turned down a little. I was given aspirin through one of my cannulas to thin my blood. I felt the nausea coming on again and quickly asked the nurse for some anti-sickness as I wasn’t taking any chances this time, but once again – too late!

I was told that the bed I was on had a broken plug and that they’d need to move me onto a different one before I could be moved to a ward. This was unwelcome news as I could only imagine what that entailed; however I was reassured that I wouldn’t have to do much! A team of people flooded into my space to do the job. When I say a team I mean about 10 of them. I felt incredibly hopeless and very embarrassed, but they somehow got me onto a board and transferred me across to the new bed.

I was now ready to leave HDU and head up to the ward. After waiting a little while for the go-ahead, my parents & boyfriend were told they could take my paraphernalia up and I’d be following behind them to meet them up there. Not too long after they’d gone up, the machine I was hooked up to started going berserk. The nurse by my bed looked very panicked as she got the attention of the other nurses pointing at my machine. My heart rate had shot up to 140bpm. They got someone to go and tell my family to come back, as I’d have to stay in HDU until things calmed down. They speculated that it was because my family had just left, but I honestly felt no anxiety at all until this disarray started! I kept checking my screen for my BPM, but the nurse told me off for doing so.

Mr Politis happened to check in on me as all of this chaos was going on and suggested the high heart rate was down to the pain; the level had certainly risen after being moved and having the epidural turned down. Suddenly a lot of people were around my bed again and I was told I needed to have an ECG. All seemed happy with the results and luckily it slowly went down to 120bpm. A couple of hours later I was finally taken up to my ward.  It did remain over 100bpm pretty much the whole time I was in hospital (typically my resting heart rate is around 70).

Within the first few hours in ward 12 my situation seemed to deteriorate rather quickly. By the time I arrived there, my pain had risen to an extremely uncomfortable level, and continued rising until I could no longer communicate properly. Finally, armed with a buzzer, I pressed it to let someone know, but quickly learned that, even with a buzzer, it was difficult to get attention. I was able to feel myself rubbing my legs and realised that the epidural must not have been working properly. My epidural machine began beeping, but nobody came to check it for over an hour. I lay there (the new arrival in a full ward) groaning in agony. When it was eventually checked, they found that it was beeping to signal that it wasn’t working properly; somehow an air bubble had become trapped. I’m certain that it had something to do with transferring beds since the pain seemed to worsen after that episode.

Following the huge spike in pain hitting me, it felt like days for it to become slightly bearable again. From groin down to knee was the loudest scream of the worst pain I have ever experienced in my life. It honestly felt like I’d been hit by a bus travelling at a high speed. As there was nothing there to mask the pain anymore, and I had not been given any pain medication of any strength, it was as if I could feel each point which had just been sawn and screwed. I had prepared myself for the suffering of some pain, but nothing had prepared me for this.

When my parents came to visit me the next morning my dad checked my back to look at the epidural site and found that it wasn’t in there at all, so the level of pain I’d been feeling made a lot of sense. After letting them know, I then had to wait a good 40 minutes for another cannula to be fitted so a PCA machine (morphine drip) could be attached to me. Even with the morphine the pain was still insanely strong and did little to mask what I was feeling, however I still pressed that button for another dose every five minutes and hoped for the best… 



The physiotherapists showed their faces for the first time and wanted me to sit up on the edge of the bed. It sounds so simple now, but at the time this felt like an enormous task and it actually was unbearable. I went very pale and felt as though I was ready to pass out. The pain, on moving my leg was piercing. I somehow made it to the side of the bed using the monkey bar to pull myself as the physio lifted my operated leg, but when she began slowly bending it at the knee to drop my leg to the floor, all I could do was shriek… I dreaded them coming back! I know this is an important factor in recovery – but I did wonder whether they ‘cared’ as at no point did they show any empathy.

Sleep in the hospital was kept to the minimum. Finally drifting off in the early hours, the nurses would appear, draw the curtains and cheerily wake everyone up at 6.30 on the spot - each morning. I did have some morphine-induced naps throughout the daytimes and often found it difficult to keep my eyes open; especially when I tried to text or read anything; but whenever the strong pain rebooted, I’d be wide awake again. I was fairly surprised to find that my ward had no personal TV, radio or Internet access. There was just one 20” TV on the far windowsill with a remote that we never had because it was shared with the other wards. Their reason was that somebody had stolen all of the TV’s that were fitted. I wasn’t too bothered as I wouldn’t have been able to watch anything properly anyway, but the overall lack of technology did seem strange in this day and age.


Because most things would happen at roughly the same time each day, it didn’t take long to get in to some sort of routine. The meals, the ‘meds’, the visiting times, the shift changes… The best and most awaited time of the day (other than my family visiting, of course) was around 8pm when I’d be asked whether I’d prefer a cup of Horlicks or a hot chocolate! The meds would come around four times a day, every four hours. I could certainly tell when it was time for them, and especially when they were slightly later than usual! On top of the PCA I was also taking two dihydrocodeine and two paracetamol four times a day; something in the mornings & evenings that was a strong, slow-release pain relief (I didn’t ever get the name of it); some form of laxative (that was NOT working) and one ibuprofen (three times a day, every eight hours).

After a few days, I was taken down to be x-rayed. It was very odd, yet strangely freeing to be wheeled through the rest of society amongst ‘normal’ civilization (with my bag of wee & PCA syringe in tow). The radiographers did not seem at all happy that I was unable to get off my bed and onto the machine myself, and made me feel quite disheartened that I was making extra work for them. Passing the café on the return journey, I became fixated on the drink vending machine, really craving an ice-cold can of fizzy sugariness. I almost asked Alan, my porter, to stop off, but didn’t quite have the audacity!

The physiotherapists arrived once again and this time wanted me to stand up and sit in the chair next to my bed. It was a scary prospect, but I was determined to make progress. On the first attempt to stand upright sent me completely pale and weak again. Looking quite concerned they told me to sit back down on the edge of the bed. It was such hard work and the drowsiness of the morphine was certainly not helping. On the second attempt I managed to lower my weaker leg to the floor and felt a weird pins and needles type tingle going on in my foot. Somehow I made it to the chair and the therapists left. I’d assumed that sitting down after the operations would miraculously be better than pre-op, as my whole hip joint had been rearranged, but this was far from the case (and unfortunately still is…) The pain was beyond out-of-control and I needed to get up and back in bed ASAP, but nobody was around to help. I pressed my buzzer and awaited help, but it unfortunately took about half an hour for someone to come and get me out of that chair. It was a relief to get back into the bed again after that ordeal!


Four days after my operation, and the bloating was getting ridiculous. I was swollen, felt very grotesque and my hair had become a big ball of grease. I eventually begged for my catheter to be removed. It was seriously bugging me and I just needed it gone. I hadn’t really considered the alternative as there was no way I was getting up and walking to the bathroom every time, but being cut loose from that thing was a highlight. The physiotherapists were back again and this time their feat was to get me to the bathroom for a wash at the sink. This sounded appealing as the bed-bath cleansing was not the most effective or indeed, pleasant of experiences. I was given a walker and did manage to escape from the bed more easily, but every time I tried to move my operated leg to go forward, the clunking & clacking seemed to pierce through the joint, causing me to grimace with severe anguish. It was as if all of the metal work inside of me needed a lot of WD40 and it made me feel incredibly nauseous with every movement. In a dizzy haze and with complete exhaustion, I somehow very slowly made it to the seat at the sink. I was amazed at how good the fresh running warm water felt in my hands and on my face, even though the torturous trip back was in the back of my mind.

On the Friday night I accidentally caused a big scene. All I was trying to do was see the screen of the PCA machine so I knew when I was due another dose, but because it hadn’t been screwed on to its stand well enough, the whole thing came crashing down to the ground with a loud bang. The nurse came over with a fierce frown and told me off for touching it. I really felt like a naughty child - all I wanted was some pain relief! It was then that I was switched to hourly oral morphine. I much preferred being able to administer my own pain meds as it now meant I had to press my buzzer and wait for an unknown amount of time every time I wanted another dose, but I eventually found it to be better than the PCA & I was in less of a haze. It was such a relief to be free of any wires and it also meant I was able to get out of the hospital gown for the first time and into my own nightie. 


 
Being on the ward felt similar to how I imagine it would be like being in the Big Brother house. To begin with I had a lady opposite me constantly moaning about how much her foot hurt after having a bunion removed (I know that must be very painful, but at the time, lying there with a freshly broken pelvis & leg, I was not up for listening to any of it). Another lady on the other side of the ward had a recent knee replacement and was supposed to have been discharged days ago, but her mobility just wasn’t getting any better, bless her. She really reminded me of a character Julie Walters plays and was a very entertaining personality to have for company throughout my time there. The girl who arrived next to me a few days in was the only other younger patient on the ward and we had some good giggles through our curtains, but it did amuse me that she didn’t know what operation she’d had done. Another lady at the end of the ward was a hip replacement patient, when she had visitors it seemed her whole extended family came to visit as about 15 people would gather around her bedside each evening and they would openly and loudly discuss their family matters!

During the weekend I tried really hard to get out of bed as much as I could. Each time it got a little easier, but it was still exhausting work. I hated using the bedpans so that was good inspiration! After being prescribed some Movicol liquid I finally managed to have my first bowel movement and it felt like it was an achievement worth celebrating. I attempted to wash my hair in the shower chair on the Sunday and it certainly lifted my mood. I was thankfully, slowly beginning to feel more human.

By the Monday came around I finally felt ready to go home. Of course I wanted to be at home well before that, but today was the first day that I felt ready. I eagerly awaited the physio’s arrival all morning – what a difference that made - as only a few days earlier - just seeing them approach from afar made me wince. They finally came over armed with a pair of forearm crutches as I was about to head over to have a shower, so I had my first attempt with them on my way to the bathroom. I picked it up quite easily and found them so much better than using the walker. I felt like a completely different person to the one they had seen the week before and was glad to have finally turned a corner. I was told that my weight bearing status had been moved from non- weight bearing to partial (although I was only able to lightly place my right foot on the floor at that point). They said they’d be back later to try the stairs, which made me very hopeful that it was my day to escape (it’s well known amongst the hippie community that in order to be released home, you need to be able to complete the ‘stair challenge’ - and I was determined to smash it).

The physio came back after midday to take me to the nearest stairwell and I was briefly told how to go up and down. I found it much easier than I’d anticipated and I was told that they were happy to discharge me. This was such happy news and my face was beaming with joy. I couldn’t wait to be released to all of my home comforts! I just had to quickly speak with the occupational therapist about the equipment I’d need to help me at home and then I could go. I was given a toilet seat raiser to take with me and she ordered a bath bench to be delivered the next day. The front TPO dressing was beginning to come away at the corners so a nurse came over and changed it for me before I left. I told her I was squeamish and didn’t want to see anything, but when I heard her surprised reaction at how good it looked, I couldn’t help but take a peak. I was so shocked to see that after only 7 days it was healing beautifully and there was nothing gruesome about it at all. I was then taken down to the discharge lounge in a wheel chair and given a huge bag of medication and the rest of my 28 blood thinning injections. 


And so, exactly a week after waking up in recovery I was loaded into the back of an ambulance and driven home. That ride was bittersweet. It was so beautifully refreshing to see the outside world, yet each bump and bend in the road was incredibly amplified. I couldn’t help feeling nervous about the full flight of stairs I needed to master to get into my flat, but I managed to tackle them with a good amount of effort. The ambulance driver made sure I was safely inside and I was left to my own devices. It was rather surreal. It was amazing to see my little George, (my cat) although I could tell he was wondering what the new big metal arms attached to me were about. 


Home & Dry

Being at home was a lovely and welcomed change, but I really struggled to find a comfortable position. I was so used to having an adjustable bed and a monkey bar to move myself around in the hospital. My back & bum had already had enough of being laid on 24/7 as well. I still wasn’t sleeping well at all. To achieve any form of comfort at all I had to use a ridiculous amount of pillows and have them arranged them in a particular way on my bed. I really wished I had a reclining chair at that point! I was also getting very emotional about the slightest of things. The bath board delivery didn’t come the next day as promised (or even for a few days after I’d got home - as the therapist had forgotten to order it) and I cried uncontrollably about not being able to have a shower.

I was very lucky to have my mum come and look after me for the first week I was home, her help was invaluable. It was also a great excuse for us to spend some quality time together, although not in the greatest circumstance. She and my boyfriend have been incredible throughout this recovery! George has also been looking after me very well throughout the healing process and to begin with refused to get off my lap. His purring cuddles have certainly helped me through this too.


On day 10 post-op I noticed an orangey- yellow discharge coming from the unchanged FO dressing that we figured it was likely to be iodine, but I called the district nurse to come round just to check and to change my dressings. When she pulled back the dressings she was very impressed at the speedy rate of healing and told me she didn’t need to re-dress them as they were already nicely knitted together (I have one 5in scar on my groin from the first part of the TPO, and one long 13in scar down my leg from the FO that connects to the back of the 3in TPO incision on my bottom). I was shocked that my skin had healed this well, especially with having EDS.

The swelling in my leg was still growing at a very high rate, which had me and my mum quite worried. We kept measuring it everyday and thankfully by the end of week two it stopped getting any bigger. My knee was becoming incredibly painful and by the end of the second week it was absolutely screaming at me just as much as my operated hip. I also realised a couple of weeks out that I hadn’t been told my specific restrictions, so I rang my surgeon’s office for more info. He rang back a few days later and told me that I could weight bare up to 50% and not to apply any rotational force to my leg, but I was okay to bend and everything else as the osteotomies were very stable.

Three weeks into my recovery and I had an assessment with hydrotherapy. The first thing the physio said to me was. “You’ve been referred here by Graham Brown?” (The man who two years ago was telling me for six months that my pain was down to being traumatized, and that I’d exhausted the hospital’s facilities when he couldn’t fix me with breathing exercises…) I was very shocked that he had absolutely no idea about my operations, but I was luckily able to request my old PT, Alison, for the actual hydrotherapy sessions. It was also this week that I had my first bath, which was an incredible highlight. Getting in and out was a different story, but I was so thankful to be submerged amongst the bubbles.  Christmas was just a few days away and my mum & dad drove back down to Birmingham to pick me up so I could spend it in Durham with everyone. I knew that the journey up north would be difficult, but I thought that with the right cushions in the car and with the front seat back I’d be able to manage. It just didn’t work and was actually excruciating. Sitting was still impossible. I opted to lie in the back and we made lots of stops so I could move and stretch my legs. I really didn’t like travelling like this, but to spend Christmas with my family, anything was worth it!

I spent most of my time at home with my feet up on the couch, but I had to use the stairs twice a day to get up to bed, which I found to be a demanding task. It took so much energy, especially going up. I also had a really bad bout of sciatica down my ‘good’ leg and could barely put my weight through it or use it properly, so that made everything a lot harder. I cried a lot. I continually used ice and took oral morphine around the clock for any relief I could get. Although still in the really early and very painful stages of this recovery, I still had an amazing Christmas and New Year. Anytime with my family is special and everyone was so understanding of my situation.

Week 5 came around quite quickly and I had my first post-op appointment with Mr Politis. The clinic was running over an hour late and I couldn’t sit or stand for long, so one can only imagine how I felt that day. The secretary could see that I was in agony and offered me a bed to lie on in a side room away from the waiting area. I was incredibly thankful. I wish I’d known about this room for all of my pre-op appointments! Mr Politis was pleased with how the x-ray looked. The pelvic cut was healing very well, but my femur didn’t seem to look as if it had any bone growth at all. He told me that I could progress to full weight bearing slowly over the next six weeks, as this can help bone to heal. He reminded me not to put any rotational force on my leg, as well as telling me not to smoke whilst I’m still healing. As if I was going to take that up again after all of the effort it took to quit! 


I mentioned the relentless knee pain and he wasn’t too concerned. He said it’s fairly normal due to my kneecap being pulled outward my whole life and now it’s in a new position. I asked about the sitting situation and he didn’t really say much about that in particular, but did mention that for the first 3- 6 months I’ll wonder why I’ve had these procedures done. Obviously I still have a torn labrum & FAI, but I’ll have to wait until I’m fully healed from these osteotomies to explore the arthroscopy route.

I have to admit having exactly the same sharp groin pain as pre-op (plus new pains) is pretty disheartening. You don’t expect to go through two major operations for the problem still to be there, but I have to keep reminding myself that I’m still fairly early in this very lengthy recovery and have a long way to go until I’ll have an inkling about what the long term outcome will be.

Week 6, I had my first hydrotherapy session. It was nice to see Alison and it felt great to be back in that warm pool again. I did a few strengthening exercises that at the time didn’t seem like much, but for the next couple of days I felt like I’d done a huge workout. I asked Alison if it was normal still not to be able to sit down and she reminded me how early I was in the recovery. She did say that it could be a mixture between my torn labrum, the impingement & tight hip flexors. I was trying to get out of the house more often, even though it still took a lot out of me each time I tried; but on the occasions I did, the fresh air felt amazing.

During week 7’s hydro session I worked on my external and internal rotation as well as doing some strengthening and stretches. The difference between my right leg and left is a huge - and something that’s going to take my muscles and brain a long time to get used to. It is very strange having a completely rotated leg and I didn’t ever realise just how ‘off’ they’ve been this whole time. The internal rotation of my operated right leg is now fantastic (having gone from pretty much zero degrees), but I’m mourning the loss of my external rotation and still wondering if I’ll ever be able to sit cross- legged again as it has been corrected so much. I attempted to begin cutting down on the codeine even though I was still in a lot of pain. Although I was still very dependent on them and had already cut out the oral morphine, I really disliked being on them for this long and wanted to do something about it.

Week 8 and my ITB started to become very problematic  (the iliotibial band is a thick band of fibers that runs down the outside of the thigh attaching to the tibia). This typically happens when the glutes are weak (and I’m beginning to learn that weak glutes are a huge factor in lot of problems with these operations). If I moved in the wrong way I would get a piercing firework of pain down the lateral part of my thigh, which would make me screech. Although it was extremely tight, it felt to me like the band was getting caught on the top part of the plate near the greater trochanter bursa, so I do hope that the plate does not become as problematic as people in the FO forum say it does. During my hydro session I focused on stretching that out, as well as the usual strengthening exercises (one leg dips, side step ups, forward step ups and some float work) and was given a ITB stretch to do at home.

Week 9 and Alison wanted me to start going down to one crutch around the flat so that I could put a bit more weight through my operated leg. I’d say I was up to about 75% weight-bearing on two crutches at this point, but she said that going down to one made it less easy to keep the weight off my leg. She said to use one during the day and when I was tired, in too much pain, or left the flat to go anywhere to use the two again. This was exciting news as this meant I could now carry a cup of tea!

Week 10 and the increased weight bearing really heightened the groin and knee pain. I was delighted not be eating out of Tupperware, or drinking out of travel mugs any more, but the pain was getting to me a lot (especially as I’d now generally cut down to only one codeine at night). Alison was really happy with my strength and progress in the pool and wanted to review me at the end of the session as she thought I was nearly ready to progress from the water to the gym, but when it came to it, my strength in certain aspects was not great. She booked me in for a couple more sessions of hydro and gave me some new exercises to do at home. I was given the dreaded clam shells and side leg raises to do 3-4 times a week, as well as one leg stands (holding onto kitchen bench) and a stretch to get the external rotation a bit better (although this is to be done as pain tolerates as it really sets off the sharp groin pain).

This brings us to the present, which is the 11th week post-op. It’s quite bizarre just how quickly all of that time has gone by. I’m still finding it difficult to stay comfortable throughout the days, but I am doing more around the house -although it is very hard to find the balance between over-doing it and not doing enough. My sleep is still interrupted by pain, but I’m able to get sleep on my good side and tummy for around 15 minutes a time. My lower back is really taking the strain at the moment (and is tired of being laid on) and my shoulder and neck are becoming fairly painful. I do hope that’s not because I’m compensating too much when I’m using the one crutch, but it is very likely to be the cause.  I’m trying my best with all of the new exercises I was given last week, although the clamshells and side leg raises are a killer! To begin with, I could barely lift my left leg off the floor to do the one leg stands, but over the past week I have progressed to about 5 seconds (holding on of course). I attempted a couple of steps without a crutch and my limp is incredibly exaggerated, so I’m nowhere near ditching the aids just yet – unfortunately. Before the operations I did have vague aim to be off crutches by the 12-week mark as it’ll be my 25th birthday, but looking back I think that was a tad ambitious!

My next follow up with my surgeon is at the beginning of March, so I’ll be able to find out how my femur is healing and give another update of what’s going on around then.

 

Wednesday, 25 November 2015

Counting Down To Broken Bones

I've never broken a bone in my life, so it's such a crazy thought that, in under a week’s time, I'm going to have a broken pelvis in three places and a broken femur. This is without doubt the scariest thing I've ever had to go through.  At the same time, being free of this relentless hip pain will be the best gift I could ever wish for! It really is true that some things just have to get worse before they get better. This surgery is probably the only time you can say to someone, "Break a leg," in a figurative sense - and it will have a literal meaning too.

Since receiving the date for surgery, the days have been slowly dragging along, while the weeks have been speeding by! My condition is definitely deteriorating day by day and I’m slightly concerned that my right hip has now become arthritic - I sometimes seriously feel like a 24-year old stuck in the body of an 80-year-old! It’s scary to think what I would be going through if I still hadn’t been diagnosed with any of this.

The results of the EMG test came through last week, and I can now add ‘carpal tunnel syndrome’ to my long list of issues. Not the best timing when I’m going to be on crutches for a while; but at least I now know what’s up with my hands and wrists…

Lately I've been having a real hard time getting any decent sleep & I’m waking up several times each night; as well as having some really peculiar dreams and unwelcome nightmares! One dream in particular comes to mind regularly in which I was flying in the cockpit of a plane and Mr Witt (UCLH consultant) was the pilot: we needed to make an emergency landing and he ‘aced’ it!  Others are much more random and frightening than that; involving train crashes, Nigel Farage and science museums… I have decided to put it all down to pre-op anxiety!

My pre-operative assessment was last Monday. Visiting a different hospital department in that is unfamiliar to me, brought reality to the fore. That distinct hospital smell; more nurses wandering around and hospital beds strewn in random places along corridors... I had my blood pressure and blood taken again and was asked a few questions about my overall health.

I was also asked to change in to a gown for an ECG (a test that assesses the function of the heart). When the nurse came back into the room she told me to pull the top half down to expose my chest, so she could connect the electrodes near my heart. I’m not sure why she left the room for me to change in the first place! It’s fair to say that lying there with my chest exposed to someone I’d only just met caused my dignity to come crashing down in one fell swoop, and the realisation that I’m probably not going to get it back for quite a while sank in as I quietly swallowed my pride. Thankfully I was deemed fit for surgery.

I was told about the blood-thinning injections I’ll have to have in my stomach that apparently cause lots of bruising, and the stockings I’ll have to wear for about 6 weeks, but in the scheme of things that’s nothing to worry about. I also realised the other day that I’m not going to be able to pick up George (my lovely little cat) for a while and I’m pretty sad about that! I’m not looking forward to being away from him for a week or so either, but I know his healing purrs will be waiting for me when I get back from hospital.

  
Typically I'm a very last minute Christmas shopper, but this year I felt I’ve had to be a lot more organised as I’m still going to be very dependent on people when the 25th comes around. It feels quite odd to be all wrapped and prepared in November, but I’m sure there are plenty of things I’ve forgotten about!

When all of this hip ‘stuff’ is over, it's my dream to get back in the saddle and just gallop for miles on some majestic beach - the wind in my hair, without a care in the world. In a realistic world, it will also be amazing just to be able to sit comfortably in a restaurant, a cinema, or anywhere else for that matter! I hope to write some updates of my time in hospital next week, but as I’ll be heavily ‘out of it’ for most of my stay, I’m not sure how that will go down just yet… 

See you on the other side! 

Monday, 2 November 2015

It's A Date!

After weeks spent checking the postbox with a pounding heart, I finally have a date. Four weeks today, on Monday 30th November I am set to have my first lot of hip operations (right Triple Pelvic Osteotomy & right Femoral Osteotomy).

I am absolutely terrified, yet truly excited. I'm trying to keep myself busy (quite a task when you can't do much at all), but it's really hard not to think about it a lot. I can't imagine what it's going to be like having a 'new hip' and a 'new leg', having so many restrictions and things like having to lie on my back for so long and not being able to carry myself a cup of tea. I'm also one of those people who has to look away anytime I see anything slightly gory, so how I'm going to handle seeing any of my incisions, I do not know. Even thinking about it right now is making my stomach turn!

I spoke to somebody online who's also had both of these operations done together and she has no regrets, but she did tell me to expect a very long recovery. It will be around a year until I have full strength again (& then there's the left side to do). I've read many on the hip groups say that it's called being a 'patient' for a reason, because that's apparently one of the most difficult things to do during a recovery like this.

To prepare myself for surgery I'm going to do my best to eat a healthy balanced diet, drink lots of water to stay well hydrated, strengthen my legs, arms & core as much as I'm able to without causing anymore pain or injuries and try to keep a positive outlook. All of which are easier said than done! I recently bought myself a pull buoy (a float that sits in between your legs), which makes swimming a lot easier for me as I don't have to move my hips at all and can use just my arms to swim. It's a great solution as I love being in the water, although the bus journey to & from the swimming baths unfortunately leaves me very sore. I can not actually wait to be able to sit down in comfort!

I'm certainly going to make the most of taking hot baths, making my own cups of tea, baking on a whim and putting my own socks on before Nov 30th comes around. I also need to remind myself to buy some extra big knickers for post-op - apparently they're a must.

 

Wednesday, 28 October 2015

The Old Smoke, The New Laura


My appointment to see Mr Witt at the University College London Hospital crept up on me rather more quickly than I had anticipated. I found myself really dreading the trip, because as I've mentioned, travelling and I don't mix well. Mr Witt has such a great reputation with hip preservation surgery (particularly PAO's) amongst the UK 'hippies', so hearing his opinion was crucial for me in going forward with the planned Triple Pelvic Osteotomy & Femoral Osteotomy at my local hospital in Birmingham under Mr Politis. 

I was expecting to have to wait for a reasonable amount of time - don't get me wrong - but I really didn't think they would make me wait for nearly 3 hours. My poor hips are not built for this kind of thing, man! After the first long, sore hour, I heard my name being called for the clinic waiting area. Mr Witt's door was in view, but it remained closed. I turned around to see another doctor, someone I hadn't gone all of this way to see - and frustration flooded through me. I explained to him that I was told if I waited until October, I could see Mr Witt; if I didn't want to wait I'd have see somebody else. I'd opted to wait until October, as his personal opinion was really important for me to hear. 

The ladies at the reception desk were (thankfully) happy to help me out (I heard other people after me having the same problem and they were told they weren't able to see Mr Witt, so I felt rather lucky on that front). I let them know about the sitting situation and they were really positive, promising that I would be the next to be seen. A further hour and a half, and a few other patients later, I was called in by Mr Witt…

I'd heard so much about him and had seen a video of him explaining the PAO procedure; it felt comparable to meeting someone I already knew well combined with meeting a celebrity. His presence was very calming and, like my surgeon Mr Politis, he seemed really composed and placid. Perhaps these are the typical characteristics required when you cut up people's bone up for a living!

Mr Witt checked out my scans, asked a few questions and examined me. I always feel like a bouncing ball of frustrated energy when attending hospital appointments; akin to a pressure cooker ready to explode - with all the information about all of the pain I'm feeling; but Mr Witt's energy was somewhat a soothing experience. (That's until he tried to internally rotate my legs, which caused me to jerk and shriek in pain!)

Thankfully, his opinion confirmed that I need both pelvic and femoral alterations (on both sides), which came with huge relief.  (A 'huge weight off my shoulders' sort-of relief.) I now feel like I can move forward with the confidence that I'm doing the right thing - and that is certainly a great feeling. 

I received this write up of my appointment a few days later -


I am also really proud to write that I have managed to quit smoking over the past few weeks! Something I really didn't think I would be writing. It's inevitably been very tough and I don't think I could have done it without Mr Politis threatening to postpone my surgery date if I couldn't give up on time - I definitely was not going to let that happen! This surgery is so huge and significant; I feel it's so important to do whatever is in my power to help it go as smoothly as possible. 

It's not very common knowledge, but it's not just the smoking part that can interfere with healing. Nicotine is a vasoconstrictor (narrows the blood vessels) and is proven to play a big part in slowing down the recovery process. It can even cause the cells to die off, meaning I would end up needing a bone graft - that was enough information to help me kick my bad habit!

So, with my newfound super-strong sense of smell - and a second opinion in agreement to the first, I'm feeling pretty good!

Thursday, 1 October 2015

Waiting & Wondering


It's been a little while since I last posted here, mainly because it's taken this long to get any developments – and it has to be said, the waiting has been somewhat testing! I was told that I would have to wait two weeks for a verdict from the MDT (multidisciplinary team meeting), unfortunately this turned into a couple of months. Luckily though, being well-acquainted with the unreliability of the NHS waiting times, this came with little surprise.

Meanwhile, I received this letter which explains the options of two surgical plans and describes some of my angles of retroversion.


Yeah, I'm just as baffled about all of those measurements, too. As my surgeon said, it's difficult enough for an experienced orthopedic surgeon to get their head around all of it, let alone a complete novice. I have joined a couple of ‘hip groups’ on Facebook - full of excellent knowledge, support and advice. They’ve been immensely helpful to me and I no longer feel as ‘alone’ and abandoned! Reading daily about people all over the world with similar issues as mine, at different points in their recovery; hearing success stories, not-so-good stories and solutions to problems, has been a fantastic insight into this ‘hip journey’ as a whole – in addition to increasing my medical know-how!

When my appointment did finally come round, my parents decided to travel down to join me for the scary verdict. They stayed here for a couple of nights and it was the best few days I’ve had for a long time! The only niggle was, my case still hadn't been discussed at the time of my appointment, as some members of the MDT were on holiday... But, it did give my parents a chance to meet my surgeon and discuss my situation with him in good detail.

I also got a quick photo of my x-ray while I was there. My crossover signs are definitely very obvious (meaning that from this view, the front of the socket crosses over with the back of the socket, demonstrating that both are facing backwards). Typically, I believe that with normal hips from this view, (without the femurs in place) you would be able to see into the ‘cup’ of the acetabular; with mine you wouldn’t.




Last week I finally had another appointment with Mr Politis. Simultaneously shaking and sweating, I was at last told that the decision had been made. ‘Plan B’ (aka ‘The BIG one’) is the route they want to take with me. Their judgement is that I need pelvic alterations anyway, so it is better to do both osteotomies at the same time due to their significant recoveries. 

Even after all of the waiting and contemplating, this information hit me quite hard and in a beleaguered, heavy cloud of overwhelming emotion, I embarrassingly let out a couple of tears in front of my surgeon. Apologising too much, I pointed and asked for a tissue and he went to pass me my coffee cup… I really hope there aren’t any mix-ups like that when I’m in theatre!

So I am now on the waiting list for a right Derotational Femoral Osteotomy (DFO) and a right Triple Pelvic Osteotomy (TPO), leaving the option of an arthroscopy until later if it’s necessary. Apparently, the waiting list is about 2 and half months long, but we’ll see. I’ll be in hospital for around 5-7 days, initially staying in the HDU (high dependency unit) for the first day or so. I’m not sure if that means I won’t be able to see any visitors whilst I’m in there, or not.

I was taken upstairs straight after my appointment for some pre-op assessments; had my measurements, blood pressure and blood taken, and was given a little information pack about anesthesia.  Risks include nerve damage, non-unions and there’s a chance I might need a blood transfusion. I’ll be left with a 10-12in scar down my thigh, one around 5in on my groin and a smaller one at the back of the pelvis.

It’s definitely going to be tough being on crutches for such a long period of time; I’m really quite apprehensive about it! I’ve recently started getting nerve pains in my arms and hands, which I reckon must be the discs in my neck now playing up. I have had an EMG nerve test, but I’m still waiting on those results. Having EDS also means my wrists bend back too far and shoulders click in and out of place (damaging and stretching the ligaments beyond their limit), so no doubt they’ll be complaining at me more when I’ll be relying on them constantly. My left hip is slowly being more problematic as well, so I don’t know how it will stand up to the responsibilities it’ll be given in a couple of months’ time.

It’s quite mad to think back to a few months ago; I had absolutely no idea about the details of my hip condition, or that people even have these conditions. I hadn’t even heard of an acetabular. All I knew was that, for a very long time it had been causing me a relentlessly overwhelming amount of pain and something really wasn’t right. It may sound a little odd, but I actually feel like the severity of these procedures is equivalent to the severity of pain I have been dealing with for the last few years. I’m so looking forward to not having my hips on my mind at all!

This Friday I’ll be venturing to London to get a second opinion from Mr Witt at the UCLH. Should be fun…