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Posts Tagged ‘Hospital Stay’

After two weeks in hospital, and one of my scariest flare ups, I finally came home today. It was a slightly confusing turn of events, as on Thursday they were talking about me going to a mobility rehabilitation centre for a time and then suddenly the arrangements were being made for me to go home, even though everyone seemed to have different ideas about whether I was ready for this. After a lot of discussion, I made the decision that I would rather be at home to continue my recovery as I didn’t really see what more could be done for me as an inpatient, now my pain was controlled and I’d had all the relevent procedures. I’m lucky to have good support and facilities at home, plus they have arranged for me to have home physio and an assessment by the Occupational therapists to see if there is anything more I would benefit from.

My elbow had been the main factor holding me back once my hips were sorted, as it became swollen, restricted and very painful – especially when needing to bear weight through it to use the walker/crutches. My Rheumy came to examine it and found more inflammation and fluid around the joint, so I had this injected with cortisone too, which should settle it down and give me more movement and use of that left arm. I tried the stairs with crutches for the first time and although it was hard going, I think I can manage doing it once a day until I’m strong enough to try more. One important factor that has been reinstilled with me during my hospital stay is just how important it is to keep moving, even through pain and inflammation, and this is something I will be posting about once I catch up on everything.

The past two weeks have been a real eye opener for me in many different ways, so I have lots to post about. The wordpress format seems to have changed while I was away, but I’m hoping that once I figure it out I will be able to backdate posts relating to my stay, while updating with current issues as before. The reason I feel the need to backdate is that this blog also forms a record of my disease activity, which is useful for myself (and hopefully others) to look back on. I was making notes on paper during my stay, so hopefully will be able to keep it accurate.

It feels really good to be home and I’m confident that it will speed up my recovery; little things like needing to use steps to visit my little furbaby Jasper will encourage me to do so daily and even trips to the toilet provide more exercise than having a toilet in my room. I just have to remember to go as soon as I need to as it takes me about 15 minutes to get there with my walker and I’ve had a few close calls already!

Finally, thank you to everybody who visited, sent cards and messages of support to me while I was away. It makes all the difference in the world to dealing with all this and I count myself very lucky to have you all.

Take care all,

L

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{Backdated Post}

Today was a rather confusing day. I woke up in a lot more pain than usual and several jonts in my arms had started to swell and seize up again; not surprising when I was having to bear my weight through them when using the zimmer frame to walk about.  Disappointingly, I needed more help than I had done over the past couple of days and the nurses soon noticed and assured me they’d get in touch with my doctors and the Pain team.

Late morning, the Physios arrived to see me. Despite my painful arm joints, I had to keep on using the zimmer as the ‘lesser of two evils’; I couldn’t come this far in building up my walking, only to let my hard work go down the drain to protect my arms. Plus I was making progress. Since the cortisone injection in my hip the previous day, I was finally able to lift that stubborn left foot of the floor a few centimetres and take a proper step. This did a lot to reassure me that I would get normal function back, because I was still very worried it would be lost at this point.

The Physios had their concerns too: now that I’d had the procedure to my hip, the rest of my recovery was down to rehabilitation and they mentioned that I was due to go to a Residential Mobility Rehabilitation Unit for a few weeks. However, although I’d benefit pysically, they said that because of my age various people felt that it might not be the best place for me emotionally, being mainly old people there. Instead, they had put the suggestion forward to provide the same support within my own home, which to me sounded much better.  But I knew I had to have that support in place straight away, because I wouldn’t be able to manage on my own and they agreed. They left shortly afterwards, telling me that they would communicate my thoughts and, if it was agreed that I could avoid the Rehab Centre, would start putting the ‘home plan’ into action. They would see me on Monday to make a start on using crutches.

I have to admit, I was a little worried that I’d end up at the Rehabilitation Centre; my Nan had spent time in one, so I had a clear image of what they were like. It sounded promising that I’d get the support at home though and nothing was going to happen just yet, so I tried not to think about it too much. My main concern for now was to sort my elbow and shoulder joints out, so they wouldn’t prevent me from using the zimmer and carrying on with my walking. The day passed as normal; then, at some point in the afternoon, a doctor I hadn’t seen before came to see me. I assumed that he was one of my Consultant’s juniors, come to assess my joints and pain, (which was quite severe by this point), but instead he declared that I was free to go home!

I was a bit stunned as he left the room. Obviously, it was great news that I could go home, but only hours earlier I had been facing the prospect of a Rehab Centre and talking about my next Physio session on Monday…. then again, it was Friday and I know how they like to clear people out before the weekend if possible!  A nurse came in to tell me that my medication was all ready and I asked her all the questions I hadn’t managed to get out with the Doctor: mainly about the support I would receive at home. This wasn’t something she’d been aware of and so she left to chase it up, returning to say that I could only leave when that was arranged and the appropriate equipment provided.

A lot of confusion ensued.

The Physios returned and weren’t very happy that it was all happening so sudden and fast – they had a few hours, last thing on a Friday afternoon, to liase with a different County Trust about providing my care at home – something that proved very difficult, taking over a week to put in place – and to get me up on crutches, ready for home. I was already struggling with the zimmer, but putting weight through my locked elbow using crutches was agony; I knew so and they knew so, but it seemed I just had to grit my teeth and get on with it. I didn’t manage very well – a couple of steps – and the stairs were a nightmare that drove me to tears, but by this point I felt so confused and frustrated with the situation that I just wanted to go home. The Physios had their doubts but the decision had already been made..

Back on the ward, nurses and auxilliaries kept popping in to say their goodbyes. Eventually, my Rheumatologist came to see me and the whole situation suddenly felt too much. Here I was, feeling worse than I had been, unable to do much for myself or to use the crutches to get around and yet being sent home all of a sudden; moreover, I was being told different things by different people about whether I was ready to be home or not. And so I got a bit emotional. I don’t really remember what bothered me the most, I think that was probably the issue – I didn’t know what I felt myself anymore – just bewildered.

My Rheumy explained that I wasn’t actually admitted under his care (as I had come via A&E), but the care of the doctor who had visited me earlier, and it was this doctor’s decision to discharge me. He also explained that now they’d done the procedure, there was little else they could do for me in hospital, but that he was happy to request I stay until Monday if I felt I needed it in order to cope better. But who asks to stay in hospital? If they thought I was well enough to go home, I wanted to go home! Aslong as I had the support they had promised in place. He took a look at my joints before he left for the weekend. There was nothing he could do about the shoulders, since they had only been injected the previous week, but he agreed that we should inject the left elbow. This elbow has troubled me for some time now, swells painfully and locks at an angle, but doesn’t respond very well to cortisone injections; however, it was worth a shot (excuse the pun) if it gave me a better chance with the crutches.

In the end, they weren’t able to provide me with the equipment I needed for home that night and so I had to wait for it the next day. It somehow made staying there harder than it had been, but at least I knew I would be home soon and it gave me a little bit of extra time to practice using the crutches.

I was right to be worried though. Even then, I didn’t realise quite how hard a transition it would be to go home, but we would do it and manage.

L

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I can see my toes again!

{Backdated Post}

We made some progress today, in that I was able to sit up a bit more and eventually moved into a special reclining chair that one of the lovely male nurses managed to wrangle for me. This proved to be a fantastic help over my remaining days in hospital; it was remote controlled, raising and lowering as well as reclining, and so I was able to sit/stand without bearing too much weight through my hips. It was also a lot more comfortable than being stuck in the bed all day, with my legs stuck out in front of me; it’s surprising what relief a change in position can bring. Now that we knew there was no damage to my spine, I was able to switch between the two and make further steps towards getting myself more mobile – things were looking up.

And then came the ward rounds.

My Rheumatologist’s Registrar came to see me with a few other curious doctors. He told me that there was no infection present in the fluid they had taken from my hip on Friday and so it was looking like the Synovitis and Joint Effusion was down to an exacerbated Still’s flare.  He said he believed that the Still’s was getting worse because the Tocilizumab wasn’t working, despite the improvements to my bloodwork. He then went on to say that that the problem was, I had tried all the different mechanisms of drugs by this point: Enbrel, the anti-tnf, Anakinra the il-1 receptor antagonist, Abatacept the T-Cell inhibitor and Tocilizumab the il-6 receptor inhibitor.

As a result, he said I had run out of options and that my main hope was for them to look into future clinical trials that may include Still’s Disease patients. He mentioned the possibility of returning to anti-tnf therapy but felt that there was only a limited chance that I would respond after forming antibodies to Enbrel previously.  I was lost for words and he went away leaving me in a lot of doubt and feeling quite scared about the future. I have always known that my Still’s Disease was difficult to treat and did not follow the typical pattern; my Rheumatologist and I had often joked about how complicated I was, but we had always had a plan of action, another drug in the pipeline if the current one didn’t prove a success. I had always had faith that we would get on top of things eventually, even if it was a long, hard struggle to get there. Was I wrong to be so positive, naive even?

For the rest of the day I was out of sorts; I became tearful when I needed help from a nurse to go to the toilet, frustrated with my dependence and disability all of a sudden – was this going to become the norm for me? I spent a lot of time talking to my friends and family about it and they reassured me that I needed to see what my Rheumatologist said first; as I said before, he had always kept me optimistic about my future. He came to see me at about 6pm that day; I can’t remember the conversation now but nothing he said made me feel like a lost cause. Instead, he suggested that we persevere with the Cyclosporin a bit longer (with the Tocilizumab), since that had always brought some level of control in the past and I had only been on it for a few weeks at that point – some of which may not even have counted, since it is possible I may not have absorbed any medication while I had chronic Gastritis.

He admitted things were pretty dire and couldn’t offer me any guarentees, but he at least didn’t make me feel like I had completely run out of options.  I was able to relax a bit more and focus on the here and now again, taking small steps towards getting back on my feet and home – washing at the sink, using the toilet, getting between the bed and chair on my walker etc.

But I have to admit, the Registrar’s claims have been niggling away at me ever since.

L

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{Backdated Post}

This morning was an extremely difficult time, but I was closer to getting things more under control and was finally receiving the right care.

They woke me at 8.00am to take me down for an MRI (Magnetic Resonance Imaging) scan of my hips and spine; unfortunately, the porter collected me before the pain medications were dispensed and by the time we got down to Radiography, I was distressed and shouting out with the excruciating pain once again, especially after being ‘patslided’ numerous times (this is undoubtedly a useful way of manouvering immobile patients, but does not protect you from the pain of such movement). They had to call up to the ward to bring some relief down, since I needed to be still for the 40 minute scan and at this point it wasn’t looking likely. Even the Morphine didn’t really settle things down; I was realising that by the time it got to such extremes, it took repeated doses to get back on top of it. They asked me if I wanted to postpone the scan but I felt that it was needed to get to the bottom of what was causing the pain. The sooner we found that out, the sooner we could treat it properly.

So I told them I wanted to go ahead, grit my teeth and attempted to take my mind elsewhere.

The MRI Scanner

I’ve had many MRI scans in the past and usually find them quite relaxing, despite the noise. They lie (sometimes strap) you on a stretcher that moves into a tunnel, where the scan takes place. In the above picture it looks like the patient has gone in headfirst, but in my experience my head has been at the entrance – much less claustrophobic. Usually, they give you headphones (often with music), both to protect your ears from the noise and to communicate with you from outside of the room; they also place a buzzer in your hand, which you can press at any time you feel distressed or want to stop. The scan is not painful. It basically consists of rotating magnetic signals being blasted at your body as you lie very still – you cannot feel these but they are expressed as noise patterns that change with different frequencies etc. So for five minutes it might sound like you’re surrounded by knocking, the next five by drilling, the next five by clicking, tapping, zapping and so on… A lady I met even described one of the noises as reminding her of frogs croaking first thing on a wet morning in Borneo!

I tend to just shut my eyes and relax, as if going to sleep; but this particular scan wasn’t that easy though. It was torture just making myself lie still, as my body kept trying to tense up to protect itself from the pain; I had to consciously relax every muscle and breathe. I think I cried through a good ten minutes or so of it but knew that wasn’t helping, despite it being an automatic response. The pain was still severe but eventually I managed to distance myself from it; I can’t exactly explain how – I’ve read a few books on meditative practices, so maybe they came in handy? I knew that each change in the sound pattern meant a certain amount of time passing and soon enough it went silent and a voice in my ear was telling me it was finished. To say I felt relieved would be an understatement!

Obviously, it takes time for someone to analyse the MRI scan pictures and give a full report, but sometimes things are apparent straight away. For me, they noticed that I had a lot of fluid surrounding my left femoral head (ie. Left Hip joint) and a smaller amount around the Right. I was taken straight to another part of the department to have this removed by aspiration and ultrasound. By that point, I was allowed further pain relief and this dose worked enough for me to feel a lot calmer. It’s embarrassing to look back on now, but I caused quite a scene that morning howling like a banshee and such. Thank goodness the worst was now over.

I was quite nervous about the hip aspiration. I’d had it done as a child but they put you under with gas at that age; this time it would be an injection of local anaesthetic. The team of people with me were lovely and great at making me feel at ease; the Radiographer in particular had a very calming effect and I felt in very safe hands.  He used the ultrasound scanner to examine my left hip first and to pinpoint just where the fluid had accumulated around it. This is similar to the scanners you see unborn babies with – a cold gel is placed on the surface of the skin and onto a ‘probe’, which the radiographer slides over the area in question, sending ultrasonic waves through the skin. These waves bounce off things inside at different levels (according to density I think), to create the pictures you see on the screen – the main thing I learnt is that fluid bounces back as black, so when he was looking for the fluid around my hip joint, it appeared as a large black shadow around/within the hip, which appears a greyish-white as that is denser.

Once he found the fluid, he needed to find a straight path to it from the skin surface without passing through any major blood vessels – there is actuallly a lot more time spent preparing the procedure than the procedure itself. Happy that he’d found a route, the radiographer then slowly began to administer the local anaesthetic by long needle; he did this in stages to ensure that I was as numb as possible, but as he came closer to the joint itself, he began to warn me that I’d feel quite a bit of pain but it would be shortlived. The pain didn’t come. He kept asking me “are you sure you can’t feel anything?”, while jabbing the needle further in, and I kept shaking my head. It was a bit like the movie ‘Death Becomes Her’ where the doctor can’t understand how her very broken wrist isn’t troubling her!

I asked him if this was something to worry about and he pulled that confused, thinking look that doctors do sometimes, as he explained that most patients find it at least uncomfortable to have a needle in the joint capsule. He said if I really wasn’t feeling anything, then he’d be concerned that I had some nerve damage to the hip itself and that this should be investigated too. For now though, we concentrated on the aspiration. With the needle in place, he was able to aspirate 5ml of fluid from the hip capsule; this didn’t look an awful lot to me – one small syringe, whereas my knees used to drain 2-3 much larger syringe-fulls as a child – but apparently it is a lot, as there is very little ‘spare room’ within hip joints. I was told that this explained the level of pain I was in and the lack of response to pain relief. He told me that they could have given me all the pain relief in the world, but as long as that fluid was stretching the joint out of place as it was, I’d have had excruciating pain. Hopefully, with it now gone, things would settle to a more bearable level.

I was confident that they would; in fact, I was pretty sure that I noticed an improvement as soon as the fluid was gone. I was by no means cured – the fluid needed to be sent for testing to rule out septic arthritis and we needed to find out if anything other than the Still’s Disease was causing the hip to produce so much fluid / get the full report on the MRI scan etc…  I have had very fluidy joints in the past, but I can’t remember where it fits in with things. Since this has become a major issue this past week, I will look into it myself at some point. After the hip aspiration, I was also given an abdominal ultrasound; something I was due to have that day anyway. It showed that my liver and spleen were enlarged, but since this is common with my flares, it didn’t cause him too much concern.

The rest of the day blurs in with the rest; I was to remain slightly propped up on my back in bed to take the pressure off my hips until the full MRI report was back, but with no turning timetable; instead I had to be checked for pressure sores and, when developing the starts of them on my heels, had to rest them on an inflatable. The auxillaries had to do everything for me – wash me, dress me, toilet me, help feed me… but when you feel so poorly those things don’t bother you, you’re grateful for the help and they were brilliant at providing it. I slept a lot but my Kindle came in handy as I managed to hold it above me to read for short periods but then my friend downloaded some audiobooks onto my blackberry, which was even more perfect! People were always popping into my room to see if I was okay and I had plenty of visitors, so strangely, I never felt bored!

It was decided that we would go ahead with my fifth Tocilizumab infusion that afternoon; the initial feeling on examining the fluid from my hip was that it was ‘viscous and stringy’, a good sign that there was no infection present. If it turned out there was, I’d be hooked up to IV antibiotics straight away anyway… it was one of those ‘risk-weighing’ decisions and I guess there was more risk in leaving the Still’s untreated by this point.  My infusion ward was only next door and my regular nurses took it in turns to pop round and check on the infusion and to see what ‘trouble’ I’d got myself into. They all have a way of making you feel that they care about you as an individual and they have a lot of patients going through their ward each week/month/year.  I guess this is an example of how good care can be in hospital too – from one extreme to the other.

My consultant visited that afternoon but I don’t remember much about the conversation now. All I know is that I was pleased he took the time to see me and it again reassured me that I was on the right track. One thing that we both agreed though, is that I’ve had some nasty flares and some severe joint involvement over the years; but this hip pain was totally out of proportion to anything I’d ever experienced and we needed to get to the bottom of it fast.

L

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{Backdated Post}

I woke up some time around 6.00am, Thursday morning, on a different ward – The Emergency Admissions Unit (H3). My boyfriend and his mum must have gone home, but there was a young doctor sitting on the edge of my bed ready to ask the usual admission questions about what had led up to me being there. I was slipping in and out of sleep and I’m not sure how much sense I made, but I’m sure I had a good go at getting things across. The nurses from A&E had already filled everyone in on my level of pain and immobility; I relaxed believing I’d now get the right care.

I was woken again a little later on, by a nurse that I’ll call ‘nurse M’, telling me she needed to change the bed and I would have to get up and sit in the chair. I was in a lot of pain again by this time and tried to explain this to her, simply expecting assistance or an alternative approach.  Instead, nurse M gave me a very scathing look – “so you can’t get up at all?” she asked, “how did you get to the hospital, in an ambulance?” I tried to explain exactly how difficult it had been to get to the hospital and how we did it out of sheer desperation, but she interrupted – “So you’re saying to me that last night you managed to walk but this morning you can’t?” Nurse M raised her eyebrows and went on arguing with me, without letting me explain, until she finally said “fine, if you want to lie in your own filth all day in a dirty bed that’s entirely up to you!” She turned and walked away, holding her hand in the air to silence my answer.

I was shocked and upset by her attitude, especially since I had done nothing to provoke it – it’s not exactly my nature to be awkward or cause offense, quite the opposite really. The young doctor had witnessed it all and approached nurse M, explaining that I had a severe longterm medical condition, was in a lot of pain and being kept immobile on the advice of the doctors and that she should learn to be more sensitive. Nurse M even had the nerve to shrug and walk away from her, mumbling ‘whatever’; she was obviously used to intimidating people and felt herself above the younger doctor.  I realised at this point that nurse M was going to be a problem, I just didn’t realise how much.

The next few hours were torture, literally. My pain returned to the level of the previous evening and I became quite distressed; yet my calls for help were ignored by both nurse M and the other staff. I was aware of her discussing me with them and felt that she was influencing their opinion of me, but have no idea why she took such an obvious dislike to me. I also overheard a lot of other things. For instance, once she discovered that I was due to have my Tocilizumab infusion that morning, she complained that she did not want me on her ward as it was an expensive drug; even when another nurse explained that it was paid for, prescribed and waiting for me on my regular ward she was adamant I leave.

Feeling desperate for the toilet, I asked for assistance and was offered a comode despite the fact the doctors had told them to keep me in bed. They were still due to investigate the hip, as well as some back pain, and until we had answers I was supposed to be kept immobile. I was too overwhelmed with everything to argue though and with assistance (and a helluva lot of screaming) I managed to go. Unfortunately, when I buzzed to be helped back to bed, it was nurse M that came and she wasn’t happy. She told me she couldn’t offer me any physical support as she ‘had her own problems’ having been off work for four months with a bad back; I requested that she find someone else to assist me, as I wouldn’t manage without, but she just said “come on, let’s just get it over with”.

She offered me her hand and I put some of my weight through it but was hardly off the comode when she let me fall and shouted out, grabbing her back. The curtain was whipped back with me lying prone – half on the bed and with my pants halfway down – as she made a song and dance, letting everyone know how ‘that girl’ had put her back out. The staff crowded round her, telling her to go and rest and offering her pain relief, but I was left to struggle and sort myself out; totally humiliated and in excruciating pain, not knowing if I’d done any further damage. Nobody cared. And nurse M made a point of complaining in front of me for the rest of my time there too.

There is more that I could say about nurse M’s mistreatment and bad attitude, but I think this is enough to give you an idea of how serious things were. I have already spoken with PALS – the Patient Advice and Liason Service – was visited by them during the rest of my stay and am in the process of putting together a formal complaint against her. Not only because I want an apology for myself, but I worry that if she treated me in this way, (when I can at least speak up for myself a little), how is she treating people who are more vulnerable and can’t communicate such treatment to others? She is working on a ward with a high intake of patients and I wonder how many of them are experiencing something similar to what I did, it’s frightening and totally inexcusable. No wonder both my grandmothers were terrified of being admitted to hospital and preferred to suffer in the comfort of their own home. The care you can receive in hospital is totally unpredictable, ranging from superb to abuse; I have been aware of this for a while, but this time I’m determined to do something about it. /rant over

The hours passed slowly. Throughout most of this, I was in some of the worst pain I have ever experienced and as a result was constantly crying, whimpering and groaning (I don’t mean to sound dramatic but that’s how it was – pain does funny things to you). I was told that I wasn’t due any pain relief, although we found this not to be the case later on. Nobody paid any attention to me; I was totally alone, humiliated, confused, scared… especially as there seemed to be no sign of anything changing and the pain just got worse and worse. I became totally desperate and tried to text my boyfriend’s mum, asking her to ring my infusion ward to see if I could be transferred there as soon as possible. They knew me there, they knew I wouldn’t play on or exaggerate my pain/immobility, would be more understanding… anything to get me away from all this.

Then my phone rang and it was my mum; she had phoned the ward to see how I was and had been told I was fine but had had ‘a few tears’. Realising this didn’t sound like me at all she’d decided to speak to me herself… she was shocked by what she heard. I was so distraught with the whole situation by this point that all I could do was sob down the phone. Like all good mums, she promised she would sort it out for me and I knew that she would. It turns out that she rang my Rheumy’s secretary (who we have a good rapport with), and explained what was going on, in tears herself by this point. My rheumy was at a conference that day, but the secretary sent his registrar Evin down almost immediately.

I have never been so happy to see a Rheumatologist! Things turned completely on their head from that point but I’m still a bit traumatised by what I went through. I was given pain relief immediately, after a seven hour gap, but the pain was that advanced that it took further doses to get to a bearable level. The registrar examined me, spoke to my rheumy over the phone and came up with a plan of action straight away. My friend and my mum came to see me and although the pain was better by then, I think it still came as a shock to them. Strangely, I didn’t see nurse M again – I’m guessing she decided to keep her distance.

The rest of the day is a massive blur, as I was drifting in and out of sleep. I had multiple Xrays at one point, of my hips, neck and spine and heard them mumbling things about lines and shadows and necrosis… But the important thing was that my pain was starting to be more controlled; my mum and friend were there and my boyfriend would join me later… I felt safe.

I went straight from Xray to Ward J6, the ward next door to my infusion ward and a ward I have spent time on before. Again, I don’t really remember much as I was so out of it, but I finally felt I was going to get the care I needed.

L

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{Backdated Post}

Things were more settled today; the IV meds and being nil my mouth had stopped the vomiting and the morphine was helping with the pain. I got the go ahead to have an Endoscopy / Gastroscopy procedure later on this afternoon. This is where they put a fibre-optic camera down your throat to look at your Oesophageal tract, Stomach and the Duodenum, which is the upper part of your intestine.

I’d had this procedure done at the age of 19, during an episode of vomiting fresh blood; however, that time I was given gas and was out for the count. This time I was just offered a sedative, which they said would leave me pretty much unaware of what was happening (during and afterwards), and make the procedure easier for them, so I took them up on it and signed my consent forms.

I went down to the Endoscopy department at around 2pm. The staff were lovely and very good at making me feel comfortable and at ease; they explained the whole procedure to me beforehand, as I wouldn’t get chance to ask questions halfway through, obviously! I was a little bit nervous about what to expect, but I have learnt over the years that panicking helps nobody – if you panic, your heart rate increases and you feel more agitated and out of control, your body tenses up and that makes it much more difficult for the medics to get things done quickly and efficiently. I always try and focus on the now, not the ‘what-ifs’, remember to breathe evenly and relax my body as if going to sleep (maybe this is why I am so good at sleeping anywhere!).

They explained to me that they would first numb the back of my throat with an anaesthetic spray that would help prevent me gagging – that part was quick and easy. Next, I was rolled on to my left side and I mentioned my joint problems so that they wouldn’t try and move me too awkwardly if I was out for the count at some point. They then gave me a very attractive gum shield and mouthpiece to protect my teeth from the camera itself; doing so before you are sedated means you get chance to become comfortable breathing with it in place, because it does feel different.

Next came the sedation – a quick squirt into the cannula already fitted in my arm. The first lot seemed to have no effect and so they gave me a second dose a few minutes later. This didn’t seem to work either, but they assured me it would probably just take time to kick in and I would feel the benefits throughout. Unfortunately (?) I seem to be immune to sedation –  in fact, all it did is make me feel more awake – but I’d like to point out that this made little difference to the procedure itself, in my opinion. It really wasn’t that bad because I was relaxed and remembering to breathe, but I understand why people may find it uncomfortable if they are anxious.

The worst bit is when the camera and tubing initially goes down the throat but even that wasn’t terrible – they blow air down at the same time so you make a bit of a gurgling sound (which I had to try not to laugh at) and you find it a little bit different to breathe and I guess that’s the time you’re most likely to panic, but before you know it it’s done.  Once it was down, I was quite comfortable and was able to breathe as normal and look at the screen to see my insides! The camera went all the way down into my duodenum and even took biopsies along the way, but I didn’t feel any of it.

It took about twenty minutes in all and I was aware of what was going on the whole time; the doctor explaining things as he went along. Even I could see the inflammation and a little pouch called a Hiatus Hernia  at some point along the way, although he assured me that particular problem wasn’t what was currently affecting me. Once they’d got what they needed, there was a bit more gurgling and discomfort as they pulled the camera back out and that was it – all done! It was a very simple procedure and I wouldn’t have any reservations if I needed one again, even without sedation.  They had warned me I may feel some discomfort afterwards, but the most I felt was a bit of a raw throat, which quickly disappeared.

Once the Endoscopy was over, I was allowed fluids again and (yipee!) was able to keep them all down. I wasn’t allowed food until the indepth results came back the next day though. Until then, we just kept up with the regime of IV medication with the addition of something to treat the inflammation, which they were now calling Gastritis. So we had a tentative diagnosis and a plan of action by the end of the day; can’t grumble about that!

L

Edit: I have since had another Endoscopy, this time without any sedation. It was bearable but a little more uncomfortable, which has made me realise that I probably did get some effects from the sedation,  just not what I was expecting. I was still aware of what was going on; the main difference is that with sedation I don’t recall feeling the camera doing its stuff in my stomach, whereas when I had the procedure without, I could feel what was happening. This was only mildly uncomfortable, but if you are at all anxious may be more than you want to feel.

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Note: this marks the start of my backdated posts, covering the period that I was hospitalised.

I’d last been posting about the gastric issues I was experiencing. Things went rapidly downhill on the Saturday and I was having constant, excruciating pain in my stomach and chest, alongside vomiting after only sips of water; I also experienced some rectal bleeding and started to grow more and more concerned. This continued all through the night, until we could get hold of the out of hours doctor, who told me to get to our local hospital straight away.

The doctor there examined my stomach, which was extremely tender to touch, and admitted me to the Emergency Assessment Unit straight away. The main concern was obviously the possibility of a bleeding ulcer (I suffered something similar ten years ago), but I was also seriously dehydrated and had been unable to keep any of my medication down for over 48 hours. I was examined again a short while later and had the necessary blood tests, xrays, scans, etc as well as a rather interesting examination by a doctor that looked about twelve, (Dr Liam) which (to put it nicely) found no evidence of haemorrhoids and meant the bleeding was even more of a worry.

Other possible diagnoses at this point were Gastritis, Pancreatits and Duodenal Ulcer.  Treatment-wise, I was given Morphine, Methylpred, Fluids, Anti-Emmetics and Stomach Protectors through an IV, while the rest of my medications were put on hold. They felt that these were to blame for the problems, but covered their abscence with extra IV steroids. I did a silly thing at one point and managed to pull the cannula out of my ‘one good vein’, meaning that they had to insert a new one with a fancy probe that finds deeper veins – it worked and I’m glad to have learned that it is an option!

With the pain under control, I was much more settled and so they moved me onto a side ward with five other women, who became good friends over the next few days.  I did have some reservations though, since this was the same ward that I’d had such a bad experience on in August; but the Matron recognised me and promised I would get the right care this time round. For the most part she was right and I had a much better experience at this ‘dreaded hospital’, until I changed wards.

So, I was nil by mouth and had a few investigations lined up once the weekend was over, but I was comfortable for the first time in weeks and even managed to get some sleep.

I had no idea of how things would turn out.

L

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