Prednisolone reduction?

I had my long awaited appointment with endocrinology today, my asthma consultant had referred me with a view to helping me come off of oral steroids completely but the way things are with my lungs at the moment there's no point in tampering. Basically he can't do anything all the time I'm in and out of hospital as anytime I visit an A&E department they're just going to increase the steroids and undo all the hard work tapering. There's aslo the question of whether it's appropriate to be reducing the steroids during such a bad patch of asthma control, so really we need to find out if the steroids are helping at all, a question for the asthma team, not the endo one. So I'm going back to see the endo guy in about 6 months in the hope that we'll have figured out the asthma side of things so that we know whether we can reduce the pred.

Being discharged

I'm going home today. There haven't been any positive changes to treatment and so I'm anticipating ending up back in before long, but at least I get to go home and enjoy puppy cuddles. I'm feeling really frustrated like I'm banging my head against a brick wall. They've said that they need to take a step backwards in order to move forwards with this but I feel a bit like I'm being made to feel like my asking for changes in my treatment is unreasonable. Feeling rather unimpressed!

Still incarcerated

I'm still in hospital and don't really know what the plan is other than that they want to get me out quickly. Frankly I'd much rather stay a bit longer and get things properly sorted so that I go home on a reasonable amount of salbutamol rather than the inhaler-a-day habit I seem to have developed of late so that don't end up straight back in hospital within a week or so. Really I'd like to see changes to my treatment to try to prevent such episodes, but as it seems like that isn't likely as we've exhausted all avenues I feel like we should be looking at symptom management, and trying to keep me out of hospital. Constant trips to A&E and being in and out of hospital all the time is tiring and disruptive, add to that the fact that I tend to initially deteriorate on wards and it seems even more like something we should be trying to avoid than for most. I've been struggling with daily asthma symptoms for quite some time now, and its no way to live. I hope that this isn't as good as things will get but if it is I think home nebs would make life easier, I just want to go home and live as normal a life as I can manage, and want as many tools as possible in order to manage that.

I'm feeling rather stuffy in the nose department today suggesting it's either a high pollen day, or I've caught the cold that the nurse on MAU had, which wouldn't be surprising as I catch everything when my prednisolone dose is increased, another reason why being in hospital is a particulrly bad idea for me. Either way I dont see today being a good day today.

I'm hoping that when the doctors get round to me they'll have more of an idea about what to do with me. I never know how long I'm likely to be in due to the 24 hour neb rule for asthmatics, and the fact that they've broken it in the past too.

Back in yet again.

A brief update as I'm on my phone

I should have gone with my first instinct when asked to do another mannitol challenge, and told them to go take a hike. I've been struggling most of the day, things started getting progressively worse until despite having mountain loads of salbutamol via my inhaler my peak flow wouldn't budge over 60% of my best. I was stupidly worrying about the fact it was 12.40am and I was not supposed to have any salbutamol after 1am for the challenge. I was scared, I'd been struggling for hours and was getting tired, breathing has never been so hard. That was when I came to my senses and woke my husband up to take me to A&E again.

Thankfully when I got to the hospital I was triaged straight away and taken straight through to be nebbed, and I saw the same doctor I saw on Sunday night. Whilst the neb eased my breathing a bit and allowed me to slow my breathing down, I was still tight chested and in pain. It was a while before anyone came back to check on me, but when they did they gave me another neb which improved my breathing a little bit more. Another doctor came to check on me and decided to give me another neb, some paracetamol for the pain (muscular from the effort of breathing) and decided to keep me in. I've no idea what will happen about the challenge tomorrow.

I'm now in a bed on MAU1 waiting for the nurse to come and sort out the admission paperwork. Then I'm gonna try and get some rest.

Another blip

I found myself in A&E again last night when my neighbours decided It would be a good idea to have yet another giant bonfire. Despite closing the windows the smoke found its way into the house via the air-bricks, and my lungs began to suffer. Despite ridiculous amounts of salbutamol I couldn't get on top of it and so had to go back to A&E. I was seen pretty quickly, almost straight into triage and then assess by a nurse and given salbutamol and atrovent nebs, which fixed me pretty quickly. I the had quite a long wait to see a doctor, who gave me another neb as the tightness was starting to return before letting me go home. I was a little worried about going home as the initial nebs hadn't lasted 4hours but I did feel fine, and admissions seem result in me getting worse before I get better, so off I went.

I didn't sleep well and I woke up feeling breathless and tight chested a couple of times, but managed to get more or less on top of it with my inhaler. I've spent most of today in my PJ's having a duvet day as I just don't have enough puff to do much else, but at least I'm home and getting lots of puppy cuddles.

Brittle?

The next admission

I spent most of Friday getting gradually worse asthma wise, and after the debacle that was my last admission I really didn't want to go back to the hospital. By the evening I'd come to realise that I would be in need of more help so off we trundled to A&E. My husband parked the car whilst I went to speak to the receptionist, but I soon realised that after the short walk from the drop off point I was too out of breath to talk, I manged to get out something along the lines of "asthma" and "discharged Thursday" before I remembered I still had my ID bracelet from the last admission with my details and hospital number and handed that over. I was seen much more quickly by triage this time, but not before I had to move because a woman wearing far to much perfume sat down behind me. This time the triage nurse took me straight through to resus, where I was put on oxygen and given salbutamol and atrovent nebs and I improved pretty quickly.

Once stabilised I didn't have to wait long for a bed, and as I was being wheeled to the ward I saw one of the doctors that I spoke to before I was discharged "It didn't work then." he said. Whilst I was getting myself sorted, taking my evening meds, putting on my PJ's and sorting out all the usual admission stuff with the nurses the lady in the next bed was constantly hitting the curtain and complaining that I was making too much noise. In fact she buzzed for the nurse twice to complain about the noise I was making, I wouldn't have minded so much if I had actually been making a lot of noise but I was doing my best to be quiet and seriously how much noise can you actually make getting tablets out of a box? It turned out that this particular woman was a real nuisance, she was constantly attention seeking. Anytime the nurses attended to another patient she'd start shouting and press her buzzer, in fact she kept the entire bay awake all night and made more noise than the entire ward put together which is quite something as at one point someone elsewhere on the ward was screaming as if in terror. There were two crash calls for two different patients in the early hours of the morning and both times the attention seeking woman started yelling for attention and when told that she'd have to wait because they were dealing with an emergency she became abusive towards the staff, swearing and banging on the table. At breakfast time the nurses insisted that she got up to try to prevent her from sleeping all day and keeping everyone awake again the following night, but now tired after behaving like a petulant child all night she had other ideas. After insisting on being  accompanied to the toilet all night despite not needing to use a walker or other mobility aid, she climbed over the bed rail and into her bed in the raised position that staff use when changing the bed, I'm not even sure I could do that, so it just goes to show that she really didn't need to keep pestering the staff to take her to the toilet. At least it was quiet once she was asleep!


On ward rounds on Saturday the consultant stopped my oxygen and decided to continue nebs and review the next day to see if I could go home. By the afternoon I was moved to a respiratory ward, and boy was I glad it was actually a resp ward and not the overflow one I was on last time. I was handed over as a "brittle" asthmatic, and whilst my GP has used the term a few times I've never really taken much notice as its a term that only a specialist is qualified to give. It seems that the specialists have decided that I am indeed brittle, and even though I know it's just a label I have to admit I'm finding it a bit of a struggle to get my head around, especially as no-one has actually talked to me about the implications of such a label. I was told that they wouldn't send me home until I was ready to go this time, so at least I'd have more control this admission, they also think that I may have a viral infection that's contributing to my symptoms, I'm not so sure I think its mainly down to the weather. The staff and patients were nice and friendly, although the lady in the next bed hummed the same song on an infinite loop at all hours of day and night she didn't even know she was doing it.

On Sunday I was having the usual problems with triggers as staff were spraying patients with deodorants and hairspray when bathing them and helping them dress so I did mention that I was struggling with it. The response I got was "Well we have banned flowers", frankly I think flowers would actually be less of a problem for me, but that is just my experience. I had a bit of a funny turn at one point, where I felt dizzy and a bit sickly for some unknown reason, but a nap with my fan blasting at me seemed to sort me out. That afternoon I felt much better lung wise and everyone was commenting on how much better I looked. I slept much better on Sunday night probably the combined effects of exhaustion and the codeine that I was prescribed for the rib pain induced by coughing.

On Monday I was definitely suffering with the heat, if my fan was of or not facing directly at me I'd have more sickly dizzy spells. I also noticed that the vein where my cannula had been had become hard and tender, I think it was just bruising, because I had knocked it before it was removed, but in light of the dizziness I got the nurse to check to confirm. The doctor took me off nebs with a view to going home the next day, which did concern me a little as getting washed and dressed was still making me out of breath. They also said that I'd had some borderline blood glucose results which may be due to the increased prednisolone, but will need following up when I'm back to maintenance dose or if I can actually get off it. I definitely. I didn't feel as great of the nebs, but that's to be expected. I did have to ask for a neb on Monday night as hammering my inhalers just wasn't helping enough.

Tuesday morning I wasn't sure if I was ready to go home, having needed a neb overnight and having a pretty poor nights sleep, but in the end I decided I was probably better leaving before everyone got up and sprayed their various smells and before the disinfectant came out in order to avoid needing another neb.

So I've been out since Tuesday 30th July and I'm still out, its been hard and stupid things are making me out of breath but hopefully things will continue in the right direction. I've got my Mannitol challenge test on Wednesday and I'm really nervous about it, and pretty worried it could set me back. I still don't know what this one will tell them that the last one didn't.

Crazy admission

Well I ended up in hospital again, twice in fact since my last post. I was in Monday 21st to Thursday 25th July then again Friday 26th to Tuesday 30th July.

Monday 21st July
In the end I held on until my husband got home from work and weighed up my options with him. I fully expected him to tell me to go in as last time he told me in no uncertain terms what and idiot I was being, but this time I think he was more reluctant than I was. In the end I persuaded both myself and him that another trip to A&E was probably the best option, and may help may that I can be trusted with home Neb's. So I packed my bag and my husband drove me to A&E

Last time I was in A&E I was seen by the triage nurse pretty quickly, but this time I had a much longer wait on my hands. Perhaps mentioning the difficult asthma clinic or the fact that my asthma nurse had sent me, or maybe it was the fact that I was alone that got me seen sooner last time. Either way the wait was more than unpleasant, it was hot and humid in the A&E waiting room, and the smoke that drifted in from the tobacco connoisseurs stood in the doorway all served to make my shortness of breath worse. I was aware of people staring at me as I continued to take my inhaler at regular intervals and was feeling disheartened at the string of evidently trivial injuries being called into triage before me, I guess I don't know how long they had been waiting to be seen but at the time I felt sure I needed care more urgently than them. When I did see the triage nurse she was much nicer than the one I saw three weeks ago and she took me straight through to be assessed by the A&E doctors, unfortunately there were no cubicles available so I wound up on a chair in a corridor again, but thankfully I didn't have to wait long for a cubicle to be free.

The doctor I saw was very pleasant but clearly out of her depth when it comes to my personal brand of asthma weirdness, but I do have a top asthma specialist pretty stumped so that's hardly surprising. Apparently my chest sounded clear, but as a non-wheezer who had had an extra-ordinary amount of salbutamol I wasn't surprised, its quite usual for me to only have reduced air entry and given that my usual lung function is almost superhuman, a lot of medics seem to struggle to hear that at times. She ordered an x-ray, an ECG, prescribed a Neb and told that I would be kept in for observation. I sent my husband home at this point as he had to work the next day and it was getting late, besides I was being treated now, or so I thought. The Neb I had been prescribed was a long time coming and as driven by compressor, not the oxygen that asthmatics should get, I think I ended up hammering my inhalers for almost 3hrs before I got it, as apparently there was only one nurse who had to see to all of the patients, yet the doctors had time to stand around chatting about their holidays. I do actually thing that my care was negligent in A&E because the only time anyone came to see me between the doctor assessing me and me getting my neb was when the porter took me to X-ray, if I hadn't managed to struggle on with my inhalers I could have deteriorated without anyone knowing.

Finding me a bed took a very long time, so long in fact I had to move to the clinical decisions unit whilst I waited in order to free up the A&E cubicle. Eventually I was taken to the medical assessment unit and the staff were very nice. I had a lovely student nurse who seemed to be taking the lead in caring for my bay and after A&E it was a relief to finally crawl into my bed. It took a while to get my drugs chart written up, but I took my meds anyway, and they managed to get a passing doctor to write me up for nebs as required when my chest was getting tight again.

Tuesday 23rd July
I had very little sleep, which isn't uncommon in hospitals I know, but it felt like every five minutes someone's drip started beeping or someone needed help to get to the toilet. and thee few times I did drift off the doctors or nurses had to wake me up to ask me things or do obs.

I had to beg and plead in order for them to let me still attend my clinic appointment, I wasn't allowed to go until I'd been seen by a respiratory consultant. I really wanted to discuss my treatment, particularly being allowed home on nebs with someone who is familiar with my case and the fact that I'm not very steroid responsive anymore. No-one I spoke to was keen on me having nebs at home, and neither the consultant dealing with me as an inpatient nor the team I see as an outpatient in clinic wanted to change my treatment at all for fear of treading on someone else's toes. So all that happened was my prednisolone dose was increased, despite my asthma nurse agreeing with me that it probably wasn't the best option. My pulmonary function tests were pretty reasonable, but then again I had had a neb an hour before them, there was still a drop since my last clinic appointment. There was a hushed whisper about trying immunosuppressant drugs such as, which could affect my ability to have children and may mean I need to change my profession, but they're normally used in patient that do respond well to steroids so may not even be an option for me anyway. I was also informed that I'm too complex for a traditional action plan and that my plan should be to call the asthma nurse, which is fine apart from at weekends and on the nurses day off when there's no-one around to ask, so I've no idea what I'm supposed to do then. All in all I didn't feel very positive when I left clinic.

By the time I got back to the ward the toilet in my bay had run out of toilet roll, meaning everyone was having to use non-flushable wipes and bin them, which other patients were just leaving lying around, there was even a used adult diaper left in there, it was just disgraceful! To top things off I then started to get a migraine, probably the combined result of the high salbutamol doses and the stress I was under, not to mention the lack of sleep. It did improve with my sumatriptan and a nap though. I was still having a lot of problems with triggers on the ward and took a bit of a turn for the worse when a patient decided that spraying a load of perfume was a good idea.

After dinner I was moved to another ward, I actually got a side room, I still don't know if it was the luck of the draw or if someone was actually listening to me about the whole triggers making me worse thing. So it was potentially a step in the right direction. At visiting time my husband brought me a portable DVD player and some DVDs to watch, so at least I wasn't quite so bored!

Wednesday 24th July
Despite the fact that I was in a side room down a long corridor, I could still hear a lot of noise from the main ward, but you can't have it all. My O2 sats had dropped a little overnight but were improving again, my symptoms and peak flows were still pretty crummy, and worse than when I arrived. Despite being in a side room I was still having trigger problems, my room was near the shower room so anytime anyone used aerosols or other stinky toiletries it would cause me problems, this wasn't helped by the fact that the staff kept opening my door and leaving it open despite my requests.  I'd lost hope of having my long term management improved and just wanted to get home before anything else made my lungs any worse. I spent most of Wednesday dealing with triggers when my door was opened and waiting for a doctor, in the end the nurses had to page a doctor to come and see me as no got round to me. When the doctor did come to see me he agreed that inpatient life was making things worse, and that I definitely had reduced air entry in the base of my lungs, he also sounded a bit more positive about home nebs when we spoke about no-one wanting to tread on anyone elses toes, and said that he wold speak to his boss about it and get back to me. Unfortunately his boss had already left so instead he decided to stop the nebs (and get them re-prescribed if needed) to try to get me home the next day.

Coming off nebs is always hard, it always seems like they want to get me off them too soon, but it was made especially hard that night by the patient in the next side room deciding it would be a good idea to smoke out of their window. I took a shed load of salbutamol via my inhaler but was still really struggling, so I buzzed for a nurse, who took an age to arrive wasn't interested because my peak flows were "good", yes they looked good for most asthmatics, but were pretty shocking for me. I was also told that they had some very poorly patients on the ward so they hadn't had time to check on me, fair enough I'm usually able to sort myself out, but I was struggling to breathe and worried that without the proper treatment I could quickly become a "very poorly patient" too. So I had to struggle on with massive amounts of my inhaler and hope it would be enough to prevent me deteriorating any further.

Thursday 25th July
At about 3.30am a bunch of nursing and support workers descended on my room as they'd decided to move me onto the main ward, so now I didn't even have isolation as a defence against triggers, given the vast amount of triggers on actual respiratory wards, I doubted I'd have much chance in a normal bay of 6 patients on an overflow ward, ie mixed illnesses.

After about 5 or 10 minutes on the bay a very confused lady turned up plonked herself in my seat and then told me to move out of my bed, all whilst a nurse was trying very unsuccessfully to lead her away. It turns out that this lady had been terrorising the ward since about 12noon the day before, I think this was the "very poorly patient" I had been told about, so it turns out that medically she wasn't that unwell, she just needed one on one care due to her dementia that the ward was not equipped to give her. Other patients on the bay were also feeling that their care had been neglected and in fact one patient made a complaint in the end.

My breathing was still rubbish and by around 4.30am I was getting tired so I called for a nurse, who took one look at my peak flows, saw they were good for your average patient and ignored the fact that they were down to 55% of what they should be for ME and told me to "chillax" and that she'd check on me in 10 minutes. She didn't check on me, in the end I had to press the buzzer again to ask for a neb, but was told that no doctors were available to re-prescribe them so I'd have to wait until ward rounds, which because its an overflow ward, would not be until late morning or even early afternoon, several hours wait. Much more easily said than done.

The confused lady was still constantly harassing me and trying to get into my bed, preventing me from going to the toilet and she was also threatening to bite and kick the staff that were looking after her. Suddenly another patient who up until that point had been quiet started shouting at the nurse and threatening to hit her with her walking stick, in fact another patient managed to grab the stick just in time to stop her from striking the nurse. Over in a male bay, there was a bloke who was kicking of destroying everything, apparently over drink and drugs, to the point that security and the police had to be called 3 times overnight. In all the commotion the medical needs of the other patients were forgotten. Now I'm not sure what policies the hospital has for managing such disruptive patients, but what they were doing clearly wasn't working.

By the time the doctors came to speak to me I was fairly sure that I'd be discharging myself if they weren't willing to do so, as my condition was rapidly deteriorating and the level of care
I was receiving was appalling, I was sure I could look after myself better at home. As it turns out the doctors were happy for me to go home, they agreed that being on the ward was making me worse and said they'd discuss home nebs with my clinic consultant and gt back to me. I spent most of the day waiting for them to sort out my medication to go home with and get back to me. The clinic consultant and asthma nurse hadn't been keen on me having nebs at home so I was discharged on inhalers alone, and I have to have some more tests in clinic, flow loops (which I do every time I attend clinic but its fairly quick and painless so don't mind), a repeat of the mannitol challenge test I had a couple of months ago (which showed moderate to severe bronchial hyper-responsiveness so I don't know what they hope to gain from it and am unimpressed at as I have to stop almost all of my medication which wont be fun), and an exercise challenge test (as much as I dislike challenge tests at least I don't need to stop my meds for this one).

So that was the first admission, I lasted a whole day before I ended up back in A&E, this time in resus, but I'll save that for another day as this has turned into a bit of a mammoth post.