Saturday, 27 July 2013

A less miserable post...

After my last whinging post, I thought I should write something less miserable and whiny!

I finally managed to have an appointment with a respiratory physiotherapist, which was much more helpful than I was anticipating :) She has written to my consultant to recommend that I start Carbocisteine, it's a medication which makes sputum less thick so it's easier to cough up. She went through the Autogenic Drainage (a breathing technique to clear sputum) and explained how we could adapt it to suit me. When a physio tried to go through it with me before, I really struggled with the control needed so I gave up with that technique pretty quickly! The physio also gave me an Acapella to use along with AD. I must admit, I'm quite lazy when it comes to doing things like this when I'm feeling well but that is what I need to be doing, so I can become better at doing it and increase the frequency when I'm poorly.

I've had to stop the steroid nebs which were started whilst I was inpatient at Heartlands. I started to notice that within minutes of using them, I was becoming wheezy, coughing, and my sats and peak flow were dropping. It's very strange as that wasn't happening when I first started on them! I spoke to the respiratory nurse at Heartlands, I was hoping she'd say to switch over to a different type of steroid neb but she said to stop the steroid nebs, go back on my original doses of steroid inhalers, and I'd be reviewed in clinic (I'm still waiting for that appointment!)

Oh and an update on the subcut Terbutaline trial. The team at Heartlands are claiming they didn't know anything about my cardiac history, and if they had known then they wouldn't have wanted to do the trial anyway! Absolute rubbish, I know it's been on letters from my local consultant, I'm on cardiac medication and I've spoken about my cardiac history - there is no way they didn't know! I think it's more likely that they overlooked it and only realised their error when I said I'd had some chest pain whilst on the trial (which I said was muscular pain anyway). I'm a little annoyed about that; a two week admission which was a bit of a waste of time! So, the latest update I had from the respiratory nurse regarding the results of the trial was that they think the subcut Terbutaline did help slightly (which I didn't think/see) but they're waiting for information from my local consultant about my cardiac history before making a decision on whether it should be a long term treatment for me. I don't think it helped anyway so I can't say I'm bothered by all this waiting for the decision!

Saturday, 20 July 2013

Fed Up

So, time for a moan. I've had enough, nothing is straightforward in my life. Simple things that most people take for granted are such a struggle for me, namely breathing and being allowed to work.

I've just deleted a messy explanation of the work situation. I don't want to talk about it, I can't be bothered to talk about the details and background. Basically, I've got a month to get another job. Every job I go for is either ruled out by Occupational Health or they write a report which includes the helpful statements "I can't guarantee her attendance at work" and "she may need unscheduled breaks to use her nebuliser". Would you give me the job if you read that? I certainly wouldn't! It's not even as if I've got loads of clinical skills/experience which is going to give me an advantage in getting a job. 
Anyway, Occupational Health have stated that they think it's unlikely I'm going to get another job by the deadline, and will be going on to recommend retirement on medical grounds. How many times do I need to fight this? I don't want to give up work. I don't think I'm 'sick' enough to have to give up work. I don't want to have to navigate the benefit system. I remember saying when I was allowed back to nursing this time, if it doesn't work out then I'll give up and accept I can't work. Now I'm back in that position and I still can't/won't accept it.

My lungs are very unhappy lately. The heat definitely isn't helping, I spend my days sat inside with the fan on, and only go out in the evenings when it's started to cool down. I've got myself signed off sick from work, partly because I really can't be bothered with work taking into account everything I've written above, partly because it's so hot on the wards that it makes my lungs even unhappier, and partly because the non clinical role I'm doing isn't that important that anyone even misses me when I'm not there. 

I really feel that I'm heading for a hospital admission. I've felt this way for a week or so, but I'm trying my hardest to avoid it. It's my Nan's funeral, and I can't afford to go into hospital and miss out on potential jobs to apply for or interviews. Then there is the time of year to take into consideration, in a couple of weeks the baby junior doctors are released from university to start their first jobs in the hospital, I don't really want to be a patient then!!

Okay, I've got my moan and whine out. Time to stop feeling sorry for myself and think of a plan of some sorts. Having a plan always makes me feel better.

Sunday, 7 July 2013


I did have a few lung related things I was going to blog about at some point this weekend, but that post can wait. 

This morning I woke up with a bit of a migraine so I got up, fed Tommy, took some tablets, put my phone on silent and went back to bed. When I eventually woke up I had loads of missed calls from my cousins and a voicemail asking me to phone. You know when you see loads of missed calls on your phone and your heart sinks; you know something bad has happened? So when I phoned I was expecting bad news. My Nan had a heart attack this morning and died. The family had been trying to get hold of my Dad to tell him, but they hadn't been able. I knew my parents plans for today, and knew I'd be able to get hold of him on his mobile. So I had the lovely task of phoning my Dad and telling him that Nan, his Mum, had died this morning. I can honestly say it was one of the worst things I've ever had to do. Obviously as a nurse I've had to phone people to tell them that a relative has died, but it's a bit different phoning my Dad with that news!

We moved from Birmingham to Devon when I was 15, and after then I didn't see any of my family who lived in Birmingham very much - we've never been the closest of families. Over the past few years, I've made an effort to reconnect with my grandparents and cousins when I've been in Birmingham for hospital appointments. My grandparents live really close to Heartlands hospital so I'd pop over after hospital appointments, and on this recent admission, I left my car with them and they came and visited me a few times. I saw them on Monday before coming back home. Nan had said how nice it was to see me, and how I'd come out of my shell and grown into a lovely young lady. It was really nice to see them too :)

It's a shock. I know Nan was in her 80's and was looking more frail every time I saw her, but her general health was good. I feel sad, but it's awful to admit it, I'm not devastated and I haven't cried at all. I feel like such a bitch, a horrible person. Why aren't I more upset? My grandparents were a big part of my life until I moved to Devon. I know how happy it made her that I'd gotten in contact recently and she'd seen me as an adult. I know my cousins are absolutely devastated. I know I'm not heartless, and I am sad, but...... but I really feel like a heartless bitch right now.

RIP Nan x

Monday, 1 July 2013

Day Fifteen

Day Fifteen = home! Yay!!!!

Dr Mansur isn't around today so I'm not able to discuss the results of the trial with him or future plans, so that'll have to wait for my next clinic appointment which is apparently in about a month.

As promised, my peak flow chart from during the trial

You don't need to have any understanding of the trial to be able to interpret the results. Week one is the blue line, week two is the red line. I still don't know which week I had the placebo and which week was the Terbutaline, I suspect week one was the placebo. But, it's very clear that there isn't much of a difference! (The dip on day 5 of week one is when my lungs threw a little tantrum, which skews the results a little.) It's certainly not what a successful trial of Terbutaline looks like!

I'm so pleased that I'm going to be able to sleep in my own bed tonight, with my baby boy Tommy curled up beside me :) I'm just waiting for my discharge paperwork and medication to be sorted, then I can start the 3 hour drive home!

Sunday, 30 June 2013

Days Thirteen and Fourteen

I still don't have very much to write! It's the weekend, hospitals are even more boring at weekends than they are during the week.

The trial has continued. I made a peak flow chart in Excel which has confirmed my thoughts, there hasn't been much of an improvement in my peak flows. I'll post the chart when it's complete, it's interesting to see the (lack of) results. Today is day twelve of the trial which means when the syringe is empty in the morning, that is the end of the trial!!!!

I'm hoping to go home tomorrow, mainly because I stupidly agreed to attend an interview on Tuesday because it was easier to accept the interview than explain I'm in hospital in Birmingham. I was planning on talking my way to being discharged tomorrow and if Dr Mansur decides he now wants to do the bronch, I could come back as an outpatient. However, whilst bronchs are normally done as an outpatient, considering how inflamed and sensitive my airways are, I wouldn't be relying on it being an outpatient procedure. I would be anticipating to stay in hospital at least overnight, and obviously if I could go home that would be a bonus! There would be the issue of getting back home when you're not allowed to drive after the sedation though......
Anyway, I've thought about it over the weekend and it's silly of me to go home if Dr Mansur wants to do further investigations. So, I'm hoping to see him tomorrow and discuss the results of the trial and whether he wants to do any further investigations. If needs be, I'll just have to phone the matron to explain and ask to rearrange the interview...... I can't complain, I was told I would be here for 2-3 weeks and I've only been here for 2 weeks so far.

Friday, 28 June 2013

Days Ten, Eleven and Twelve

Well, I don't have very much to write......

The trial is continuing. My peak flows aren't showing very much improvement at all; there is a slight improvement during the daytime but mornings and evenings are still dipping. The headache that started on Monday has continued, sometimes turning into a full on migraine, other times being manageable. Right now the pain has been getting worse as the day as gone on and I'm feeling a little sick. I still have a tremor.... it's all very disappointing to be honest :(

I can't wait to get back home. 

Tuesday, 25 June 2013

Day Nine

Today has probably been the most 'productive' day of my admission so far. 

It started off with being woke up by Dr Mansur and the respiratory nurse specialist. He asked my opinion on the bronch, I told him I was concerned about it but would be guided by his opinion. He said that whilst he thought a bronch would be helpful, this probably wasn't the best time to do it taking into account I was poorly on Sunday, my high FeNO levels, and if anything happened it could skew the results of the trial. So, no bronch today :) 
Then we discussed the high FeNO levels. I told him I don't think I have hayfever but am happy to go along with the nasal spray (which I am, for now, and when it doesn't make a difference I can stop it). He has also stopped my Ciclesonide inhaler, reduced my Symbicort inhaler, and started me on nebulised steroids. They'll continue to monitor my FeNO levels to see whether these changes help.
Dr Mansur then went onto say that he thinks the root of my problems may be the inflammation in my airways. Even though my FeNO levels are high and climbing, I feel okay. Dr Mansur thinks this could be the reason why I get so poorly; I'm so used to having such inflamed airways that I only start to notice and feel poorly when my airways are incredibly irritated and inflamed, then when it gets to that point, it doesn't take much to spark off a huge attack where the inflammation gets so bad that I literally can't breathe.
If his suspicions are right, and the inflammation is the cause of all my problems, this Terbutaline trial is unlikely to help me much as it won't address the underlying inflammation.......

In other news, today marks the half way point in the trial. 6 days of placebo/Terbutaline then 6 days of the other. I'm pretty sure I've just had 6 days of placebo, so if I'm right, the Terbutaline part of the trial has now started. I fell asleep this afternoon (it's very tiring doing nothing!), and woke up with a definite tremor in my hands and a headache. I didn't get any side effects when we did the trial the first time round so I wasn't expecting to have anything this time until the dose is increased on Thursday. But I was on a downward slope to being very poorly last time, and not just sitting in a hospital bed, so maybe I just didn't notice any side effects. Anyway, there hasn't been any effect on my peak flows yet so we'll just see what happens.

Monday, 24 June 2013

Days Six, Seven & Eight

So, day six nothing happened worth updating, day seven I felt too ill to update, and today I feel too whiny. So I apologise in advance.....

Day Six - Pretty boring day. The trial continued. I went for a little walk around the hospital, I walked out one end of the hospital, around the outside, and back in through the main entrance. My lungs really didn't enjoy the walk, I put it down to being stuck in this room for days.

Day Seven - Didn't start off too well with an asthma attack. My concerns over what would happen if I got poorly proved to be completely unfounded, I had all 3 nurses in my room within minutes. The doctor was a bit useless, but one of the nurses in particular was very experienced so I felt fine, and then the Medical Registrar turned up to take charge. This nurse took my ABG, I've never had a nurse do it before, she was amazing. Like, seriously, I can't explain how good she was! She got it first time and pretty much straight away, with hardly any pain. I've only got the tiniest little bruise today, I've been showing it to anyone who'll look and listen as I'm so impressed!! Then she went onto cannulate me on her first attempt! Anyway, after multiple back to back nebs through the oxygen I started to feel better, IV hyrdocortisone and IV magnesium was given, and IV aminophylline was prescribed. I was then reviewed by one of the respiratory registrars who agreed with my suggestion of holding off on the IV aminophylline for the time being as I'd improved enough. I continued to improve so didn't need the aminophylline at all, and we gradually weaned down my oxygen til it was removed this morning. 
As the day went on, I felt increasingly headachy, sicky and hot. I decided an early night was in order, took a migraine tablet and was asleep before 9pm.

Day Eight - I woke up feeling pretty good after a great nights sleep. I was up, showered and dressed all before breakfast! I'm on the list for a bronchoscopy tomorrow, I was already slightly concerned about the bronch as I know it's not uncommon for lungs to throw a little tantrum after a bronch and I didn't want that to negatively effect the trial. After yesterday, my airways are most likely more twitchy than they would have been anyway, so I was even more concerned, so decided I'd discuss it with the doctors today. I saw the ward consultant and registrar, and explained my concerns. They said that I'd have a nebuliser before and after, and being an inpatient means that it would be a good time to do it. I saw the respiratory nurse specialist who said that she understood my concerns and felt that the trial should take precedence, she said she'd speak to Dr Mansur who is overall in charge of this trial and is doing the bronchoscopy tomorrow. I spoke to the nurse looking after me who happened to be the ward sister, who also said she understood my concerns. I was told Dr Mansur would come and see me this afternoon, but he was very busy so if not this afternoon, it would be in the morning. He didn't get to me this afternoon so I'll be expecting him bright and early in the morning. It's hard because I don't want to do anything that could impact upon the trial, and I was concerned anyway about having a bronch, but at the same time, I know the bronch could be helpful to potential diagnosis/treatment..... I don't want to refuse to have it, so I think I'll be guided what he has to say about it......
My FeNO levels were measured again today, they'd gone up to 155 which surprised me! The respiratory nurse specialist has decided that I must have hayfever, despite me not having any symptoms! Previous skin prick allergy testing showed me to be allergic to tree pollen, which is prevalent at the beginning of spring - I did have symptoms a few months ago which I treated, and they're now gone. They've decided to start me on a nasal spray for the rhinitis that I don't have. It's not going to do any harm so I agreed to go along with it (for now), but it's annoyed me - being told I have hayfever when I know I don't. Don't pay any attention to what the patient says. More importantly, I don't have hayfever, therefore it isn't the cause of my high and increasing FeNO levels, so what is? I have had a sore throat on and off since Friday, I suppose I might be coming down with something viral.....

Friday, 21 June 2013

Days Four & Five...

Well, I can't believe this is my fifth day here! Only day 3 of the trial though. All issues surrounding the trial have been resolved so it's ticking along nicely. I'm pretty sure I'm receiving the placebo right now, I haven't noticed anything, good or bad, and my peak flows haven't changed. Actually, I feel a little more wheezy today.

I had a CT scan of my chest done yesterday, still waiting for the results from that......

I also had my FeNO (Fractional exhaled nitric oxide) levels measured yesterday. They're normally high when they're measured here anyway, but they were even higher yesterday at 123. The consultant requested that the nurses observe me taking my steroid inhalers to check my technique, I suspect he also wanted to check that I do actually take them! One of the ward sisters watched me and confirmed my technique is fine. Apparently we'll discuss next week what, if anything, will be done about the high FeNO levels.

Wednesday, 19 June 2013

Days Two & Three

Yesterday was a complete waste of a day and I couldn't be bothered to update with the lack of progress. Basically it transpired that there was a problem with the new protocol for the subcut trial, and this was the first time it has been picked up. So the protocol had to be amended, which first needed to be approved by the consultant, then the protocol needed to be formally typed up, then approved by pharmacy. Thankfully they worked hard to get this done quickly, as I know from experience things like this can take ageeeeees in the NHS.

So today, the trial started! Yay!!! There was still an issue with the syringe fitting in the syringe driver, which they got round. But the syringe will have more volume in it tomorrow (they primed the s/c line today which they won't need to be doing daily, only when the line/site needs to be changed) so there are going to be issues tomorrow...... the nurse said she'd speak to someone about it today and get it sorted so there shouldn't be any further delays...... We'll see what happens.....

I got moved to a room closer to the nurses station today. I saw a Dr who was concerned that I was tucked away a little at the back of the ward, and with my history of getting very poorly very quickly (although I'm fine now and obviously hope to stay this way) she said she'd feel more comfortable moving me to where the nurses could keep a closer eye on me. It's still pretty quiet up this end of the ward, and I must admit, I do feel a little more comfortable being closer to the nurses station.

Monday, 17 June 2013

Day One

I've made it, I'm here at Heartlands! I really, really didn't want to come. I even considered phoning up and saying I didn't want this admission after all, I'd just stay at home and plod along as I have been. Even as I'm sat here, I'm wondering how on earth I am going to survive the 2-3 week stay. You see, I'm actually feeling okay for me! I'm down to 20mg of Pred and my lungs aren't protesting too much (night times, mornings and upon exertion - I can deal with that!)

Anyway, the positives. I'm on the cystic fibrosis unit which is great. All side rooms and free tv, it really doesn't take much to make me happy! After speaking to the respiratory nurse, it would seem that I should only need to be here for 2 weeks, not potentially 3 weeks as I was told in clinic. That would be great, but I'll try to not get my hopes up and see what happens.

We tried to get the trial going this afternoon but the nurses couldn't work out the syringe driver. Very bizarre as I have no idea what they were doing wrong, and they're really not complicated to use! So it'll be tomorrow now, but it's okay as I knew there was the potential that I would be here for a night where nothing happened. They use sofsets here, I get very excited when I come across new pieces of medical equipment!! I've been used to standard butterfly needles as both a patient and a nurse. Apparently these sofsets are nicer to use but more expensive...... 

Being in a side room is strange. I haven't seen anyone for almost 4 hours! I like my space, but it does concern me. What if I get poorly? How long would it take them to answer the bell? Whilst I've always thought having a side room would be great and much more preferable to being on the main ward, I feel very cut off, isolated, and like I'm stuck in here. 
Ha don't get me wrong, I know I'd rather be in a side room and have my own space, rather than stuck in the middle of a ward full of noisy, confused old ladies. I'm sure I'll start to feel more comfortable in here soon :)

Friday, 14 June 2013

Dreams of a normal life

Sometimes I wonder what it would be like to live as a normal person. I feel very overwhelmed by life right now. It feels as though nothing is going right, nothing is simple, drama seems to be at every turn. I keep reminding myself that things are working out and I've been in much worse situations, but no matter now hard I try, I can't shake off this feeling that everything is wrong.

Right now I'm waiting for a bed at Heartlands. I had arranged to go in on Wednesday (depending on a bed being available) but I managed to crash my car (everyone involved was absolutely fine) and it was written off. I had to wait until Wednesday evening to pick up my new car, so I couldn't get up to Birmingham that day. Then Thursday and Friday there haven't been any beds available. Now I need to wait until Monday for a phone call to see if I can be admitted. I know from my experiences both as a nurse and a patient, Monday is usually a good day for discharges so I'm hopeful......

Tuesday, 28 May 2013


I made it to Heartlands and was lucky enough to Dr Mansur, who is the consultant/unit director. I was really hoping I would get to see him as I was desperate to leave the appointment with some kind of plan in place, so I was very happy when I saw him pick up my hospital notes!

My local respiratory consultant hadn't gotten around to sending a letter with a summary of the previous 5 months, thankfully I'd thought to take copies of my recent hospital discharge summaries in case this had happened! Maybe I'm paranoid, but I feared I wouldn't be believed if I went there and said I'd had 3 respiratory arrests in the previous 5 months! It sounds so dramatic and like I'm hugely exaggerating. Anyway, I explained what had been happening over the past 5 months, what happened with the subcut trial, how much worse my asthma seems to have gotten recently, how much it is affecting my life and I'm at the point where it is being questioned whether I can continue working..... He asked whether I wanted to retry the subcut trial (as I was feeling a little ill with a cold when it started), we both agreed it would be worth another go as I only had 2 days of Terbutaline at the lowest dose as the first week was the placebo.

So the plan is, I need to be admitted to Heartlands for 2-3 weeks. We're going to redo the trial of subcutaneous infusion of terbutaline, and Dr Mansur wants to use the opportunity to do a few investigations such as a CT scan and bronchoscopy.

I've got very mixed feelings about this but I'll have plenty of time to think those through! I've got 2 weeks annual leave from work starting the day after next, so I'm looking forward to some lovely things I have planned :) 2 weeks annual leave, then straight up to Heartlands, depending on a bed being available.......

Sunday, 5 May 2013

Week Two....

The trial of continuous subcutaneous infusion of terbutaline (CSIT) is over, and didn't exactly turn out the way any of us planned.

Following on from my last post, Monday morning came and I headed to the hospital for the syringe driver to be restarted for week two of the trial. I was actually feeling a little better compared to the previous week. Tuesday morning came and I wasn't feeling as great, but I had a friend stay over on Monday night so I put it down to being tired. Tuesday day wasn't too good, but I managed.
Tuesday night turned into a complete disaster. I have no idea what I was playing at. My lungs gradually became unhappier, and for 3 hours solid I was stuck to my nebuliser. I even used an epi-pen which I don't really remember doing. I should have called an ambulance, I kept thinking about calling an ambulance, I can't explain why I didn't. Eventually at midnight I started to feel better, I moved to the bedroom where I could get comfortable and doze a little.

Wednesday morning I went to clinic and burst into tears as soon as I sat down. I told the respiratory nurse specialist what had happened overnight and she wasn't impressed. She went and got my consultant out of his clinic, he also wasn't impressed and insisted on stopping the trial and admitting me. I argued a fair bit, but I didn't stand a chance. 

It turned out that week one was the placebo, and week two I was receiving terbutaline and due for a dose increase on the Wednesday. My consultant said it wasn't safe to continue with the trial. He couldn't be sure whether (1) I was actually reacting to the terbutaline (2) it was simply a case of my lungs playing up and the terbutaline wasn't doing anything (3) or my lungs were actually getting worse and the terbutaline had helped a little - even though I should have called an ambulance the previous night, I didn't but was okay after 3 hours of struggling to breathe. So he decided the best thing to do was stop the trial and admit me to hospital for monitoring. 

It felt like a complete waste of time. I spent the afternoon in outpatients waiting for a bed to become available on the respiratory ward. They found me a room that wasn't being used so I could get some sleep. Eventually I was moved to the respiratory ward at about 6pm, I still felt okay and slept a little and flicked through some magazines. 10pm I went to bed. 11pm I woke up coughing, within minutes I couldn't breathe. Luckily the nurse looking after me had looked after me before, she knew not to mess around and fast bleeped the doctor on call straight away. Things rapidly went downhill from there, respiratory arrest and transfer to intensive care. Luckily I improved with aminophylline, magnesium, adrenaline, hydrocortisone, nebs and being ventilated with a bag valve mask, and avoided being intubated and ventilated. The rest of my admission was undramatic; continued with my favourite medication, IV aminophylline, transferred back to the respiratory ward, gradually weaned down oxygen, all the usual steps in readiness of going home.

I managed to sweet talk the on call consultant into discharging me home yesterday. A surprisingly short hospital admission for me. Unfortunately I haven't been feeling too great since being home, but not bad enough to go back into hospital. My consultant doesn't know what to say about the CSIT trial, I'm going to have to wait until my next appointment at Heartlands for them to make a decision about what to do next......

Friday, 26 April 2013

Week One....

I started the continuous trial of subcutaneous terbutaline this week. I think this week has been the placebo, I really hope this week has been the placebo. I've experienced absolutely nothing, not even the placebo effect! In fact, as the week has gone on, my lungs have slowly, gradually gotten worse. I've got daily appointments with my respiratory nurse whilst on the trial, she commented on this decline and today wanted me to be admitted as my oxygen saturations were only 90%. I talked my way out of it, I think the fact that I was able to talk in full sentences was what swayed it, and I promised to get to hospital if I needed to over the weekend. 
I'm really hoping that I can keep out of hospital, I desperately want to finish the trial and the trial will have to stop if I get admitted. It's taken so long to set up that I just want it over and done with now!
So next week is week two of the trial. I'm holding out that next week is going to be the terbutaline, and that it makes a difference to my asthma. If not.... well I'm trying to not think about that.......

I had an incredibly frustrating meeting at work today. To the people who matter (Human Resources, Occupational Health, Lead Nurses), I am a delicate little flower who can't do anything, and I mean anything which is in the slightest bit physically demanding. This opinion is not shared by myself nor my respiratory team. Obviously I accept there are limitations caused by my condition, and yes, when I'm poorly I'm severely limited. But I don't spend my life poorly. But then, I understand it's hard to know what to do with me when sometimes I'm really well - to the point where you wouldn't know there was anything wrong with me, and sometimes I'm really unwell - to the point of being unable to move and at worst, respiratory arrest. Then of course, the majority of time I spend at varying levels in between those two extremes.
Anyway, it was agreed that I could return to work next week, back to my old ward in a non clinical role. I pointed out I'm on the subcut trial and have a syringe driver to carry around, and have daily appointments with the respiratory nurse. They said that was fine. I should have said I don't actually feel well enough to work at the moment, but I didn't feel able to. I've been pushing to go back to work so I can't hardly say I can't as soon as they sort something out for me. I went to see my respiratory nurse and she advised that going back to work, mid way through the trial, when I'm already not feeling well, was not going to be a good idea. So I'm having another week off sick, then go back to work (in a role I really don't want to do) the week after. 

*sigh* sometimes it seems that life is back on track, but it never is.

Monday, 15 April 2013

Nothing is straightforward!

Following on from my last post, I was in hospital for 3 weeks. Yes, 3 long weeks! To start with my consultant didn't want me to go home as I was "too unstable" and was desperately trying to sort out the sub cut bricanyl infusion. But the NHS being the NHS, nothing is straightforward and there were all kinds of complications and hurdles to jump. Then I got a chest infection so couldn't start the sub cut anyway. After a week of IV antibiotics, my lungs settled down enough for my consultant to let me go home with the anticipation that we'd do the sub cut trial soon..... I've been out of hospital for 5 weeks now, and everything is finally set up for me to start the sub cut next week! Unfortunately I've picked up a cold and have a stressful few days ahead of me, so I need these lungs to remain stable and not throw a tantrum before next week.

I saw my GP not long after I'd been discharged. He said (and I quote as these words are stuck in my head) "the trouble with you, Dawn, is that you're going to die one day". He went onto say that I think I'm ok when I'm not, when I should be seeking help. I disagreed - I don't think I'm ok, I know I'm not ok, but what am I supposed to do? I can't go into hospital until I need to be in hospital!

Anyway, I'm still not back at work. The Occupational Health doctor I've been seeing for years has retired so I had to see the new consultant. He seems to be of the opinion that I'm a delicate little flower who can't even push a bed. He has recommended redeployment on medical grounds, but again, in the NHS nothing is straightforward or sorted out quickly!

Monday, 1 April 2013


It's been a while since my last post. I have been meaning to write, I get onto Blogger then I find I just don't have the words.

Since my last post I ended up in hospital again, less than 2 weeks after I was discharged. Usual story of managing at home until getting very poorly very quickly. For the first time ever, I have no recollection of the paramedics arriving. I always manage to 'hold on' until they turn up, then I know I'm safe - I'm in their care, they'll look after me. I've always thought of it as some kind of survival mechanism. Apparently this time I was unconscious and barely breathing when they turned up, then went into full respiratory arrest. I've always taken some comfort in this survival mechanism; however bad I get, somehow I manage to keep myself going until help arrives. Now, I can't depend on this. Does this mean I shouldn't depend on the fact that I always manage to call for help? What happens when one day I can't get to the phone and dial 999? When other people have asked me that my answer has always been "but I always manage to call for help". Up until this time, I've always managed to 'hold on' for the paramedics to turn up before collapsing. There are a lot of 'always' in this, but now this survival mechanism doesn't seem dependable.

My respiratory nurse tried to talk to me about having a pendant alarm. I was horrified. Then my parents brought up the idea. I laughed and said old people need pendant alarms, not me, I'm 31.

I didn't intend to write about this. I hadn't even thought about this since leaving hospital. All of a sudden I feel very vulnerable.

Monday, 4 February 2013

Attention Seeking

I've always been the type of person who needs to be asked how I am rather than simply tell people how I am and about my life (whether I tell them the truth or what I want them to hear is another matter!).
I've noticed other people, not just those with severe/brittle asthma, don't hesitate to broadcast to the world things like how poorly they are, when they're in hospital, major and minor details of their life.

I've been feeling rather ill for a little while now. I've been struggling with work, well, living in general. I've felt so ill, I've kept pushing myself and puffing away on my nebuliser and knocking back the steroids. I knew I was running myself down - constant headaches and exhaustion, feeling irritable, and generally feeling crap. I'd seen my GP and got myself signed off work for a week in the hope I could get a grip on my spiralling out of control asthma.
Last Wednesday I suddenly felt a lot more unwell. I was maintaining my oxygen saturations above 90%, I don't worry unless they drop into low 80%'s, but I felt so awful that I went with my gut instinct and phoned an ambulance. I can remember bits of what happened whilst with the paramedics. The next thing I was aware of was being ventilated. I was aware that I wasn't able to breathe for myself, I couldn't move a muscle but I could hear everything going on around me. To be honest, it was pretty terrifying, not in a "I'm going to die way" as I knew I was safe, but more in a "I'm aware of everything but I'm effectively paralysed, and I'm scared" way. Apparently I appeared to be wide awake at times whilst intubated, eyes open and trying to mouth words. They had to keep increasing the sedation - things like that scare me - I'd rather be out of it and then come round when its all better!!!! It hasn't been that bad the previous times I've been sedated and ventilated.
Anyway, I'm much better than that now. Still in hospital but not in intensive care, hopefully escaping later on this week.

My 'issue' is, that I feel so unsupported. For example, if I posted what had happened on facebook then I'd have loads of messages, and as generic as some (most?) of the responses would be, it would be nice to know that people were aware of what I've been through and have thought of me.
There are very few friends that I feel I could contact to let them know I was poorly. I don't feel able to contact majority of friends and let them know what has happened as I feel that I'm attention seeking! A friend text me today to ask if I was free to meet up, I replied saying I was in hospital and very briefly what had happened. She demanded to know why I hadn't told her sooner. I do think of telling people but I don't know what to say "hi, I'm in hospital and have been poorly enough to be in intensive care. how are you?"!?

I don't feel that I am an attention seeker but doesn't everything I've written say that I'm seeking attention?
I don't know. I'm torn between feeling that I'd like the support of people but I don't want to be an attention seeker, but at the same time, how can people support me if they don't even know what has happened?

And now I've written that last piece, I can see how it relates to so much of my life.

Thursday, 24 January 2013

Still here....

So it would appear that I'm actually rubbish at blogging. Two months without an update! I read other peoples blogs, I just don't have any exciting news to update my own blog with.

Lately, life in general seems to be a bit of a struggle. I feel ill all the time. I've begun doubting my ability to do anything at all. Everyone else is telling me that I can't work full time with a serious respiratory condition. I can't afford to drop my hours, and I won't qualify for further benefits (so far I only get DLA) unless I dramatically drop my hours or quit work altogether. Then there is the issue that I can work for over 50% of the time, and I want to work.

I saw Occupational Health today, they're recommending redeployment on medical grounds. I've given this so much thought, I really don't know what to do for the best. Initially I agreed that maybe working in a less physically demanding environment would be better for me, now I just don't know. Clearly I can't continue in the way I am but I feel so pathetic. All I seem to do is whine about feeling ill. Mentally and physically, I feel ill and so tired.