Friday, 23 November 2012

Hello again!

I didn't realise that it had been a month since my last post - bad Dawn!

I'm plodding on through life, which is both good and bad. Work is still an issue, I'm not entirely sure where I stand and what is going on; I'm in a horrible position where I'm being told one thing by one person and then being told half of something else by someone else which doesn't match what I was told initially. I just wish people would be honest rather than think they're being nice and trying to spare my feelings, which in the long run ends up in making a situation even worse!!

I had an appointment at the Severe and Brittle Asthma Unit at Heartlands last week. I must admit, I wasn't feeling too hopeful before I went. Clinic was running 1.5 hrs behind when I got there so people were moaning, but then respiratory physiologist told me that Dr Mansur was running the clinic on his own which is why it was running so behind. Well, this made waiting over an hour worthwhile! I've wanted to see Dr Mansur from the beginning but every other time have ended up seeing one of his registrars, which is fine but they don't make any big decisions without discussing things through with Dr Mansur first, so I'd rather just see him in the first place!

First we discussed Bronchial Thermoplasty. I'd previously been told that I'd been ruled out for this treatment as I've had too many chest infections over the past year. Dr Mansur said he didn't want to rule it out straight away, but would look at my CT scans to see the extent of my Bronchiectasis. Apparently Bronchiectasis is a contraindication for Bronchial Thermoplasty, but they might go ahead if the Bronchiectasis is very mild. I have very mixed thoughts about this procedure, but I'll save that for another blog.

Then we discussed the subcutaneous Terbutaline infusion. This has been mentioned before, but Dr Mansur said that he now thought that should be our next step. I'd need to be admitted to hospital for 10-14 days, and have a trial of Terbutaline to see if it actually helps. Unfortunately, winter is not the best time to try to get an elective bed on a respiratory ward so Dr Mansur thinks it would probably be around March time. My local consultant had previously mentioned running the trial at my local hospital, so I mentioned this as it would obviously be much more convenient. The respiratory nurse specialist at Heartlands is going to liaise with my local respiratory team, and discuss where would be best placed to run the trial. 

When the subcut infusion was first discussed, I was really optimistic that it would work. Since then I have tried Bambuterol tablets (which is a prodrug of Terbutaline) and unfortunately I simply couldn't tolerate them. I was shaky, couldn't sleep, and I had a constant severe headache which didn't respond to any medication and was severe enough to stop me from doing day to day life. So whilst I still want to give the Terbutaline a go, I'm not falling into the trap of thinking that this is my wonder drug, and is going to transform my life. 

Sunday, 21 October 2012

Can I call someone for you?

I doubt it will come as a surprise to read that I've been in hospital. I did manage almost 7 months without an admission, which is good going for me! It was the usual story of struggling for hours before going in, I promised myself that I wouldn't let it get too bad before seeking help, unfortunately I don't seem to get that 'in between stage'. I go from being at a level where I can manage and don't feel the need to be in hospital, straight to being in a life threatening attack. I used my Epi Pens for the first time, I used both in the time it took for the ambulance to arrive, I'm not sure whether they helped but they certainly didn't make things any worse!

I was in hospital for 8 days, this time my lungs just wouldn't settle down and they're still very twitchy now which isn't great! During one severe attack, the ICU registrar and consultant reviewed me, they decided I had a Pulmonary Embolism (PE), arranged for an emergency CTPA at 2am..... and it was negative. I could have told them that! It's not the first time a PE has been queried as my asthma doesn't always follow the typical pattern. I narrowly managed to avoid being admitted to ICU twice on this admission :(

Anyway, at numerous times during this admission when I was poorly and really struggling to breathe, the nurses looking after me at those points kept offering to call someone for me. Was there anyone I wanted to be called to come in and sit with me? For them to be aware that I was poorly again? Someone just to be there for me? I kept saying no. I think the nurses thought I didn't want to be a nuisance to anyone, the truth is, there wasn't anyone. I don't have anyone to call. It's not as if this is a new situation, but I guess it hit home a little harder this time. 
My family, well the nurses could call my family but they wouldn't do anything, they wouldn't appreciate the late night/early morning phone call though! 
Friends, (and I'm talking about friends who live in this area so are able to come to the hospital), they don't even come and see me during regular visiting hours, so I don't think I can rely on them to come when I'm poorly, just to be there and support me.
Usually, the respiratory specialist nurses come and see me daily when I'm admitted. I'm pretty sure the senior respiratory nurse specialist was away last week as I didn't see her around on the ward. I saw other specialist nurses visiting other patients on the ward, but they either didn't realise I was in or were too busy to say hello.
As much as I used to complain about the people I used to work with, they'd always come and visit me. The people I work with now only contact me outside of work if they want to get a lift from me.

I know I'm whining. Usually when I've been in hospital I feel sorry for myself because I've been very poorly. This time, it's because I feel so alone. 

Saturday, 6 October 2012

Long time, no update.....

Hello! I've been thinking about writing something for a while but things haven't been going so well lately, I don't want to moan and whine and moan and whine - even I get fed up of myself!

I'm settled into my new home. It's great, I love living here! :) I've got a few more pieces of furniture to buy, but they're just little non essential storage pieces so I'm waiting until I find things that I really like rather than making do. It has been ever such hard work all this furniture shopping ;) ha!

So, a common theme for me to ramble on about; lungs and work.

First the good, I've finished my Return to Practice course. I'm now waiting for the results of my work, I know my assignment is fine but I have no idea whether my clinical practice portfolio is the same standard - I absolutely hate writing reflective accounts! Hopefully I should get my PIN number back soon and I can be a 'real' nurse again.

My stupid lungs are creating havoc. If I didn't have my own nebuliser, I'd have had to give in and go to hospital by now. Initially I thought I had a chest infection brewing as I had my usual warning signs; headache that doesn't respond to any medication and a temperature. But my lungs have continued to get worse and the more typical signs of infection haven't appeared, so I don't think I do have an infection after all. I have no idea what is going on, and upping my medication and getting lots of rest isn't helping. Not good :(

Work isn't going too well. I've had to phone in sick a few times, which I absolutely hate doing. But, on the days I haven't phoned in sick and forced myself in despite not feeling great, I end up having to use my nebuliser multiple times during the day, and come the end of the day I have an awful headache bordering on a migraine, and my lungs are so unhappy that they then play up all night and into the next day :(
The comments from my colleagues and matron have started; how impractical it is for a nurse to leave the ward to use a nebuliser (even though 9 times out of 10 I do it during my breaks!!) and such like. Sympathy seems to be waning - not that I want their sympathy, but people seemed to understand that I was trying to continue working but struggling, whereas now I feel they look at me like I'm a nuisance. I appreciate that I might be making this into a bigger deal than it actually is as I'm feeling so down right now.
There was a management meeting about me last week, I only became aware when I was told it had been rearranged, the sister thought I had known about. I asked if I could attend to be told no. Outcome of it (as I was told) is that I'm being referred to Occupational Health (who I have to see every 3 months anyway) as there are 'concerns' about my fitness to work. Here we go again. This is what happened before. Seriously, who would have thought it would be so difficult to continue working?!?!

Tuesday, 7 August 2012

Update time

I'm a bad blogger leaving it so long before updating! So, what have a got to share that is worth writing about.....

I had another appointment at the SBAU in Heartlands. Whilst there I was able to meet the lovely Emma which was great! I'm sure she was glad when I left though as I have a tendency to get excited and talk non stop!
I had to have my lung function tests redone as they weren't done properly on my previous visit. My lung function tests showed a 30% increase after a neb, no surprise there but it's always good to get these things confirmed properly. I also had my exhaled nitric oxide levels measured for the first time which was rather exciting! We don't have such exotic machines in my local hospital.
The appointment was with a registrar and I left feeling that it was a complete waste of time :(

Since then I've had yet another chest infection, it seems to have completely knocked my lungs from that little stable period back into uncontrolled and unpredictable :( Things aren't too bad yet, but I am concerned about not being able to get on top of this.

I'm moving house this week! It's very exciting but probably isn't helping the stupid lung situation. I don't feel stressed (well, I am starting to feel a little stressed today as I still have so much left to pack) but I think moving everything around and dust is upsetting my lungs a little.

I received the clinic letter from my appointment at the SBAU. It was far more helpful than I left the appointment feeling. The letter recommended that I have a home nebuliser. Finally!! I have been fighting and begging for a home nebuliser for years. My local consultant is very against asthmatics having home nebulisers, which I've found incredibly frustrating. Every time I brought it up, his answer was that 'if I needed a neb, I needed to be in hospital'. Last time I saw him, he said if Heartlands agreed to me having a home neb, he'd be happy with it. So yesterday I went to my local hospital and got myself a little nebuliser - yay!! Seriously, it's amazing how happy this little bit of medical equipment has made me! I'm not under any illusions that it's going to cure me or anything, but I think it's going to massively help in the middle of the night when I wake up struggling to breath, and in the morning when it takes me ages to do anything because I'm so breathless and wheezy.

Heartlands have been keen to push Bronchial Thermoplasty with me. I haven't been too keen on the idea as I feel there are other options we could try before going for such a drastic treatment. I thought we left it as something we could look at in the future. However, today I had a phone call from one of the respiratory nurses to screen me for BT. I was a little surprised but went along with it. It turns out that I'm not eligible because I've had more than 3 chest infections in the past 12 months. Even though I wasn't overly keen on having the procedure, I feel a little upset that this treatment isn't available to me. Meh I'll get over it, I guess I just don't like being told I can't have something!!

Next time you hear from me, I should be in my new home :)

Wednesday, 6 June 2012

Let's go fly a kite

The title has absolutely nothing to do with this post, the song has been in my head for hours. 

I can't sleep hence the 2.30am blog post. I really need to get into some sort of sleep routine, I just find it so hard to get out of my lovely bed each morning!! I like to stay up late and sleep in, unfortunately on work days I need to get up at 5.30am, meaning I don't get much sleep the night before I work as I'm not tired enough to go to bed at a decent time because I've slept in too late that morning! I try to set my alarm, but if I don't actually 'have' to get up for something, I have a habit of switching off my alarm and going back to sleep. I need discipline!! Actually, now come to think of it, I'm lacking discipline in a few areas of my life..... maybe that is something I should work on!!

I'm very pleased to say that my lungs are happier than my last post. I've finished my course of antibiotics which have definitely helped. I didn't need to even think about taking myself to hospital for treatment, and I only needed to take one day off work sick - and that was purely because I was stubborn and decided to work a 12.5 hour shift after only two days of antibiotics and very little sleep. I was told I could work a half day if I wanted, but I insisted I'd be fine, then the next day I could barely get out of bed without coughing and gasping for breath. But, a day of sleep and taking it easy meant I felt much better :) Not that I can take all the credit, I think this chest infection was only a mild one, or maybe I caught it and got antibiotics earlier than I normally do. I certainly haven't felt as poorly as I normally do when I have a chest infection.
I think I'm finally growing up or something, there was a time when I would have forced myself into work regardless of how I felt, whereas now I can see that taking a day off when I feel ill means I can rest, and most likely (hopefully!) stop myself from getting any worse meaning I end up taking a week off work, or even worse, end up in hospital!! Granted, it would have been better if I'd only worked a half shift then maybe I wouldn't have needed to phone in sick the next day, but hey, one step at a time!!
I think the slightly down feeling I had last week was caused by me feeling generally unwell, as I'm feeling much more positive again this week. 

On the whole, life is good :)

Wednesday, 30 May 2012

That's the way the cookie crumbles

Well, I did know it wasn't going to last but that doesn't stop me from feeling a little sad that the spell of feeling well is over :( I've been feeling ill for a few days, initially I thought it was mainly down to the weather as I don't get on too well with the heat, but no, my GP confirmed today that I have a chest infection. Stupid lungs causing stupid problems. Still, I don't feel as poorly as I often do when I have a chest infection, so hopefully the Amoxicillin will stop things from getting worse and I can avoid hospital!

I don't have much else to say, work is going well, uni is going well, a few other things..... not so well. I'm not sure how much of that is down to me feeling generally fed up/down/unwell though, so hopefully things will pick up.

Oh, in other, better news, I did try a Starbucks Chocolate Cookie Crumble Frappuccino today - yum!!!!

Thursday, 17 May 2012

Normality is so underrated

Life is going well, I thought it would be nice to make a positive blog post for a change rather than only writing an update when I have something to whine about!

Today, I realised that I feel well, I'd go as far as to say that I feel good. I appreciate that probably sounds like a strange thing to say. You see, I think I've become so used to feeling wheezy/breathless/tired/okay as long as I don't do too much, that I forget that it's not 'normal' to feel that way. There was a time, not all that long ago, when I didn't feel that way all the time! 
I was at Alton Towers over the weekend, when I was there last October I remember I was pretty much okay, but needing to use my inhalers more than I liked, and needing to sit down every so often. This time I felt as though I had 'normal' lungs like everyone else. Obviously, I still took my medications during the day regardless of feeling well, but there was no needing to sit down to discreetly use my inhalers, no concerns about walking across the park, no feeling exhausted due to a combination of episodes of struggling to breathe and disturbed sleep for the same reason. 
Of course the brittle asthma hasn't disappeared, but the past week or so I've felt as though I have 'normal', well controlled asthma..... it's nice to be able to do 'normal' things without having to consider my health and whether I feel up to it. I know this is unlikely to last, I've had little spells like this before and I don't know what causes my lungs to be so well behaved for a little while, then revert back to being a nightmare, but it's nice when it happens! I guess the unpredictability is part of the definition of being brittle?

Due to the disastrous past 5/6 years I've had, I'm under the care of various health professionals; both mental and physical health professionals. The input from the mental health professionals has lessened as time has gone by, and today I was discharged from one service. I've felt for a while that I was ready to be discharged, and I've been happy to have very limited contact with the service as I knew I didn't need their input any longer - today was actually my first and only appointment with them this year. It was so great to hear someone else echo my thoughts, and to get such positive feedback.

Oh, and I love my job! All the hard work over the years to get back to working as a nurse was worth it. I knew it would be, but it was hard to keep going at times. I really thought I'd have a huge problem with my confidence, but it hasn't been anywhere near as bad as I thought. Of course, I'm not 100% confident in the skills and abilities I had years ago, but definitely don't need my hand held quite as much as I anticipated.

So yes, life is smiles and positivity. I'm even feeling motivated, this is not something I come across too often! Little things like taking the time to moisturise my face, planning what I'm going to eat - healthier meals rather than complete junk food, thinking about how I can get some more activity into my day - this one is not easy, but even just walking a little more is a start. Tomorrow, I'm going to clean my little flat top to bottom, and I'm rather looking forward to doing it! lol maybe the discharge from the mental health service was a little premature!!!!!! 

Saturday, 5 May 2012

Playing at being a nurse

So, I'm now a pretend nurse aka on my Return to Practice course! It's going really well, I looked through my diary and was shocked when I realised I've actually only done 4 shifts in this role; I feel so at home already :) I guess the fact that I've got a lovely mentor really helps. She tried to get me to take charge of 8 patients yesterday, I was a wimp and turned all wide eyed and scared. As the day went on I realised that I just need to get on and do it, so before I went home I made a point of telling my mentor that I wanted to take charge of some patients on our next shift - scary!!!!!!! 

The only negative aspect I have found in this role is that there is no set uniform. Student nurses have a different uniform so you can immediately identify them as students. Return to Practice nurses have to wear the same uniform as a registered nurse, this means people can't tell by looking at me that I'm not yet a registered nurse (I was registered, but as I had so much time away from working as a nurse my registration lapsed, this course is to get me back on the register). So people ask and tell me things, and expect me to know what they're going on about! Still, it's a minor negative and overall I love it :) :)

Now, I just need to get motivated and do some of the written work and reading that I need to do!!!!

Sunday, 15 April 2012

Work, lungs and meds = the story of my life!

This has been quite a big week for me. After almost 4 and a half years, I went back to work on a ward! I arrived feeling a little anxious that I'd feel out of place and not really sure what to do, it was so strange, I very quickly felt right at home and it was like I haven't been away for so long!! I suppose basic patient care doesn't change over the years, there is just even more paperwork to be done. So, week 1 of being a Health Care Assistant is done, another week to go, then I start my Return to Practice course. I'm starting to feel excited about it now :) :)

Like I said, over 4 years I've been fighting my case to be allowed to work on a ward again. It hasn't been easy, so this really meant a lot to me. I was really hurt by the lack of people who bothered to wish me luck/well wishes/ask how it went/whatever. My family, I don't expect anything like that from them, that's just the way things are. But friends........ I wonder if maybe I expect too much at times :( I don't know, I like to think if I had a friend in the position I was in last week, I'd have seen how big a deal this was for them, and wished them luck and asked how it went afterwards.

In other news, the Bambuterol and/or Ciclesonide was making a slight difference to my lungs!! My morning peak flows were slightly improved, and my night time symptoms were slightly less. Unfortunately, I started to suffer really bad headaches which not a single painkiller I own would touch, and real difficulty in sleeping. I hoped that these side effects would wear off by the time I started my new job but they didn't :( Starting a new job with a banging headache, and only about 3 hours of broken sleep a night was not ideal! I tried to phone the respiratory nurses at the SBAU but I forgot it was clinic day which would explain me not being able to contact them. Instead I contacted my own respiratory nurse at my local hospital, she doesn't have any patients on these drugs so wasn't able to offer me much help but she confirmed what I thought (and basically that was all I wanted, someone to agree with my thoughts on what was best to do next). I stopped both meds, I'm pretty sure the Bambuterol was the cause of the side effects and not the Ciclesonide, but I want to start both again. Today is the first day I haven't had a headache, so I'm going to give myself a few days then slowly restart the meds. I plan to start with the Ciclesonide then after a few days, I'm going to reintroduce the Bambuterol. I was on 10mg, and was supposed to increase to 20mg. As I noticed a slight improvement on 10mg, I really do want to give this a proper go and get the dose up to 20mg. So I'm going to start again with 5mg, and hopefully the side effects will lessen and I can get my body used to the drug and slowly increase the dose. I'm going to be so disappointed if this is another drug that helps me but I can't tolerate, but I'm not prepared to accept defeat where this drug is concerned just yet! :)

Unfortunately, my fears that my lungs would react badly to returning to work on the wards, have proven to be right. I'm hoping that this is just a little blip, to go from an comfortable little office job sitting down all day to a job which is demanding and I'm on my feet all day, I suppose it's only to be expected. Also, I've had a constant headache and not as much sleep as I'd like, and tiredness always makes my lungs grumpy. I really, really hope that this is a temporary blip which will settle down. I guess I always knew there was a real chance I wouldn't be able to do this, but I'm going to be absolutely devastated if this return to ward work doesn't work out. 

Anyway, does this read as a negative update? It's really not meant to be!! Overall, this has been a great week, and I'm hopeful that the little blips I've had with grumpy lungs and the new meds will be easily overcome :)

Tuesday, 3 April 2012


I've had a really busy couple of weeks. Today I was able to wake up in my lovely bed, look at the clock, and go back to sleep. I love my bed! :)

Last week was my assessment at the Severe and Brittle Asthma Unit in Birmingham. I travelled up the day before and met up with my Grandparents and one of my cousins. My family moved from Birmingham to Devon 15 years ago, I last saw my Grandparents a few months after we moved down, and I have no idea the last time I saw my cousins - probably closer to 20 years ago!! I was a little nervous as it's been so long since I last saw them, but it was completely unnecessary. It was so lovely to see them, and I'm definitely going to make an effort to stay in touch with them.

So, the appointment. First of all, I woke up feeling pretty bad. I got the bus to Heartlands, it took me about 30 mins to get to the main entrance from the bus stop as I had to keep stopping to breathe. It only took 5 mins to get from the main entrance to the bus stop when I left, so I wasn't doing too well first thing! My first appointment was with the respiratory nurse specialist. At this point I had oxygen saturations of 90% - on one hand I was pleased that my lungs were playing up as I was so worried that I was going to turn up, my lungs would behave beautifully and they'd think there was nothing wrong with me. On the other hand, struggling to breathe when you're in an unfamiliar place and need to get somewhere for a certain time is no fun!! I had allergy skin prick testing, which threw up some surprising results - that's for a separate blog post.

Then came chest x-ray, blood tests and lung function tests. Unfortunately, no one told me which medications I had to stop prior to the lung function tests, so I need to go back and do those again. I've got a letter informing me of an appointment and a detailed list of what meds should be stopped - I assume they forgot to send me that list first time around, maybe I should have known or asked, but I didn't think about it.

Finally, I had my appointment in the clinic. I didn't see Dr Mansur, but one of his team instead. Talk about it being a small world; the Specialist Registrar I saw recognised me and I recognised her, we talked about where we've previously worked and it turns out that we met each other years ago when I worked in Taunton hospital! The appt was good, and it is so reassuring to know that there are further treatments out there for me to try :) I've increased my Omeprazole to twice daily in case reflux is creating a problem. I've been on the increased dose for a week now and it hasn't made any difference, I didn't think it would but it didn't hurt to try. I've been prescribed Bambuterol tablets and a Ciclesonide inhaler. I've got an appt with my GP tomorrow to get these prescribed, I hope there is a chemist which stocks these meds in the small town I live near as I'd like to get going with them!

We also discussed VCD, I've got to have a nasal endoscopy to rule this out. I had a nasal scope years ago in the middle of an asthma attack which was negative, and I don't have any symptoms of VCD, so I'm not expecting the scope to pick anything up but I'm happy to have it to rule this out.

Dysfunctional breathing came up, I think that the physio thought it was more of a problem for me than it actually is. I was quite anxious during the whole day, I was very tired and the physio kept putting her hands on my stomach and chest whilst talking about the correct way to breathe. I can't stand being touched by someone I don't know, so I was really tense and nervous. I know at times I do have an element of dysfunctional breathing, but I also know that it doesn't cause my asthma. At the same time, I accept dysfunctional breathing isn't going to help my asthma!! I'm just a little worried that they're going to think dysfunctional breathing plays a bigger part in my asthma than it actually does, as I have absolutely no problem in breathing 'correctly' when comfortable, but when the physio had her hands on me, I was completely unable to do it! I guess I should have said how uncomfortable I was, which would have explained how tense I was.......

Anyway, it was good, definitely worth the effort of getting there. My next appointment is July, which gives me time to trial these new medications. If they don't work, the next things we'll be discussing are sub cut terbutaline and bronchothermoplasty. I did bring up the topic of home nebulisers. As the SpR I saw had previously worked in the South West, she commented that she had noticed that consultants down in this part of the country seem much more reluctant to let people have a home neb....... therefore, she doesn't really want to go against something that my consultant is clearly against. However, she said we can discuss it at my next appointment if the Bambuterol tablets don't help. Which is fine with me, if we can find some meds which help, I won't need a home neb :)

Thursday, 22 March 2012

Life goes on

I'm pleased to say that I'm over the drama of my last post! My appointment at the Severe and Brittle Asthma Unit in Birmingham is next week, I'm hopeful that something good will come out of it. 

I've left my admin job - yay!! I'm now using up my remaining annual leave, then after Easter I'm going back to work on the wards :) I've got 2 weeks working as a health care assistant to get used to the ward environment again and shift work - it's going to be a shock to the system working shifts again! Then I start my return to practice course, and 6 months later I can re-apply for my registration. Once that is processed, I'll be a 'real' nurse again!! I don't think it's sunk in yet that this is all happening, after 4 1/2 years of constant battling, I've finally got what I wanted. Part of me is concerned that I'm not going to be able to do it, if I fail this time then that will be it, I'll be stopped from working altogether. But, I can't think like that, I've got to at least try - and I'm really looking forward to it!! :)

Monday, 12 March 2012


So, let me tell you a story. Hopefully writing this down will help me process this in my head.... 

Last week my asthma was really playing up. Monday I went to work and wasn't too great, so no one was surprised when I phoned in sick on Tuesday, then Wednesday, and then Thursday. Thursday night I slept really well and woke up feeling great on Friday, so off to work I went. As the day went on I felt a little sicky, and gradually started to feel wheezy. I went and sat in a quiet room with my inhaler, quickly I realised that it would be a good idea to get across to A&E. As I'm sat there thinking who I should ask to drive me around to the other side of the hospital, I realised that actually I was deteriorating pretty quickly and I made the decision to ask someone to call an ambulance for me. Within the 10 minutes (at most, to me it felt like ages) it took for the ambulance to turn up, I had seriously deteriorated. They whipped me around to A&E, where on arrival, I had oxygen saturations of 44%. This was with oxygen, nebs, adrenaline and I was being bagged. I don't remember any of this, I remember my sats getting down to 62%, realising I was in trouble and deciding it was probably best if I stopped looking at the sats monitor.

Thankfully I picked up relatively quickly and didn't need to be intubated or go to ITU. I went to HDU, then moved to the respiratory ward, then home today. 

The consultant I saw in A&E told me how lucky I was. The paramedics who took me to A&E came and saw me when they brought another patient in and told me that they couldn't believe that I was ok after what happened. The professor I saw numerous times in HDU kept telling me, and the junior drs he was teaching, that sats of 44% is as near fatal as you can get without actually being fatal. The respiratory consultant told me that I'd been very lucky, and 5 more minutes without medical help would have most likely led to a very different outcome. I heard all this, I understood what they were saying. I guess because it's not the first time this type of thing has happened, I didn't dwell on it too much. 
It was decided I could only go home with an EpiPen, I briefly spoke to my respiratory nurse specialist about it this morning. It was fine, I was fine. I didn't get a chance to see my respiratory consultant today, there are lots of different respiratory consultants so if I'm only in hospital for a short while, it's not uncommon for me to not see him. However, even if I don't see him, he ultimately decides my treatment. He agreed to me having an EpiPen, so I asked my respiratory nurse to ask him whether he'd changed his opinion on me having a home neb. I mean, giving me adrenaline to self administer when he won't even let me have a neb at home - just seems a little backwards to me, surely nebs come before adrenaline?!

Whilst waiting for my EpiPen to come from pharmacy, I started reflecting upon what happened. I realised that for the first time ever, I was actually concerned about going home. I live alone, in a little village. Depending on where my ambulance has to come from, it can take 10 mins or 40 mins for an ambulance to get to me. Then it takes 30 mins to get to hospital. I got so poorly and nearly died, and I was only across the road from the hospital and ambulance station.

The nurse came and gave me my EpiPen, I asked whether anyone had the chance to speak to my consultant about the home neb, and she went to find out. The simple answer was no. It was okay, I expected him to say no but I wanted to ask. Then I realised that I was going home with only an EpiPen to 'save' me if things go wrong when I'm home. I collected all my belongings to go home, when the lovely nurse came back to me and said she'd just read my admission notes, and that she hadn't realised how poorly I'd been just a few days ago. This was enough to make me burst into tears - I think I threw her a little as I'm very much normally calm, collected, in control Dawn. I then told her how concerned I was about going home, and I knew I was being stupid, but for some reason I just can't shake the fear that I'm going to die at home because I can't get help in time. She left me for a few minutes, then came back and told me the SHO would come and have a chat to me. I hadn't even met the SHO, from watching him with other patients, he seemed lovely but I had no intention of making myself feel/look even more pathetic than I felt in front of someone I've never met before. So I said I'd be fine once I got home and went. I walked off the ward holding back the tears, I got to my car and pretty much cried for the whole 40 minute drive home. I got home, unpacked my bag, had a shower, cuddled and fed Tommy baby, still crying. I don't know what is the matter with me. I know nothing has changed since this time last week, I'm not at any greater risk of dying than I have been previously. I've been that poorly before, actually I've been in worse states than that before, but for some reason, this admission has really affected me. 

I feel let down by my respiratory team, which is completely unjustified as I didn't tell them how I was feeling. I didn't even see my consultant, and I didn't tell my respiratory nurse my concerns. I want to phone my respiratory nurse but for what? What can she say or do?? I have no one to talk to about things like this, I gave up trying to talk to my family when they used to say helpful things like 'we're all going to die one day'. Of course I have friends, but there is no way to explain that horrific feeling of not being able to breathe, feeling yourself getting worse, and knowing that death is a real possibility.

So that is that. I'm home, I keep bursting in tears and have this horrible feeling on uneasiness. I don't know what to do, who to turn to, whether I should even do anything or whether I just need to 'man up' and get on with it. 

Wednesday, 22 February 2012

Onwards and Upwards

I've got an appointment through to be seen at Heartlands :) I was expecting the waiting list to be much longer, my appointment is for the end of March. I'm trying to not get my hopes up, just going back to the basics and having a thorough review should be good, but I can't get the little hope of my 'miracle cure' being just around the corner. Ridiculous I know, but it's something that I've never been able to get out of my head; that I just need to find the right treatment and I can go back to being fine........

My Return to Nursing course looks set to happen in April! I've had to apply to a different university as the university I sat the numeracy test with are so disorganised and still haven't decided upon a start date, their communication has been awful. So, I've applied elsewhere and finally had meetings with my employers to sort out the placement side. It's still not finalised and I won't be entirely happy until I have everything in writing, but everything is looking good for an April start :) Today I got occupational health clearance from the hospital I work in, which I wasn't expecting to be a problem, but I've had so many problems with occupational health in the past that I was slightly worried. Another hurdle crossed :) :)

Saturday, 18 February 2012

Being a 'good' patient

Well, time flies! It's been a little while since I last updated - I'm such a bad blogger

It was my birthday this week, and I spent it in hospital :( Not how I planned to spend my birthday at all! I'm not hugely into birthdays anyway, and I don't make a big deal of celebrating my own birthday, but being in hospital just made it so much worse! My work friends were all so lovely though, and really went out of their way to make the day as good as it could be. They'd already planned things and had a collection (it was my 30th birthday), so with a few changes, we still had our celebrations. I was so touched by the effort that they put into the day, it would have been lovely if it had just been a normal work day and I wasn't in hospital, but the fact that they went to so much effort to cheer me up as I was in hospital - I really do know some wonderful people!!!

Now, the hospital admission. I had a cold last week, and as soon as I felt that I was getting over it, I picked up another one. I thought my lungs were going to manage but I gradually became increasingly wheezy and breathless. I took myself over to A&E expecting to be able to go home a few hours later, but ended up in resus and had the works - back to back nebs, IV magnesium and IV aminophylline. I honestly didn't feel too bad, but my sats weren't great, my heart was racing along and apparently my chest sounded awful so I was admitted. 
The morning of my birthday, I was still on IV aminophylline. The usual procedure is that I have to be clear of all IV drugs for at least 24 hours, and still be okay, before discharge. So although I wanted to go home, I wasn't expecting it to happen. Then I saw Dr P walk on the ward! The respiratory ward has a relatively new system where there is a doctor on 'take' for a week at a time, so when you're admitted you see this doctor, and unless you already have an allocated consultant, he becomes your consultant. My consultant is Dr W, so I expected to be seen my Dr P, then my care be taken over by Dr W and his team. Dr P is really nice, I've met him before but I don't think he has much experience with brittle asthma and how to manage it. Previously, he has not listened to me when I've said that I thought it was too soon to take down the IV aminophylline and I have ended up in ITU. Anyway, he came along to review me. I blew him a lovely peak flow, he listened to my chest and remarked how clear it sounded, and said we could stop the IV aminophylline and I could go home that afternoon if I was okay. Whilst I was happy to hear that I could go home, I also knew it was too soon to stop the IV aminophylline. But because I want to be a good patient, I just smiled and said great. The afternoon came, I was coughing and wheezing a little and my pulse had shot back up. I was expecting to be reviewed by one of the junior doctors, and wasn't sure I'd be allowed home. Then the nurse looking after me came over with my discharge letter and said "right your discharge letter is done and you can go home....... you are feeling fine, aren't you?". I smiled, said I was fine and went home. I've struggled since being home, I was close to calling an ambulance on my first night home but my lungs settled down by 5am. I'm better than I was, but I know I was discharged too quickly. 

I know that I should have said something, but I find it so hard to have a doctor say to me that I'm fine to go home, and for me to speak up and disagree! I know full well Dr W would not have let me go home so quickly, and whilst I would have whined about it, I know it would have been the right thing to do. Also, I think it would have felt more able to say to him that I thought it was too soon to take down the aminophylline. I'm angry with myself for not speaking up. But, I'm also not impressed with how I was discharged. The junior doctor who wrote my discharge letter didn't even come over to ask how I was or listen to my chest, literally nothing!! The nurse said "you are feeling fine, aren't you?", I didn't feel able, nor want to, then say oh well actually, no, I'm feeling wheezy and think it's too soon for discharge.
I know the problem here is my own problem. I should have felt able to speak up and say what I thought, I mean it is my health! But instead, I went away like a good little patient, to struggle alone at home. I'm not really sure what my point is here, but I'm not happy with myself and how I just did as I was told when I knew it wasn't the best thing for me. 

Anyway, since being home I've slept lots. I am feeling better with each day, but I have an awful sounding, productive cough. I don't think it's infected, which is making me wonder whether this is more related to my bronchiectasis rather than asthma. 

Monday, 9 January 2012

Jumping hurdles

I've been putting off updating my blog for a little while now. My mood has been on the low side, to the point where I'm concerned my depression is back rather than this just being a blip. I don't want to whine about how sad and alone I feel.

I sat a numeracy test for my Return to Nursing course today. I revised all my nursing calculation info from my student days, only to get there and find it was just a basic adult numeracy test. It was very simple, and I now have a place on the course :) The only problem is that there aren't enough people to currently run the course. The uni want at least 15 people, and at the moment there are only 6. I don't know what is going to happen now, more waiting until either more people apply to join the course or until the uni agree to run the course with less people! Anyway, that is one more obstacle overcome. I'm on the course, now I just need a start date. The course was originally planned to start later this month.... I hate all this waiting!!!