Tuesday, 13 December 2011

Update time!

I had an appointment with my consultant yesterday. He has decided against trialling me on Methotrexate as it is an immunsuppressant, and he is worried about the recent spell of chest infections and the staph aureus which was grown from my sputum. So, we have come to the conclusion that I now need to be referred to a specialist centre. There have been discussions about this for years (literally years, that is no exaggeration!), so I'm very happy about this. Even if nothing comes from it, a second opinion can't be bad :) I'm being referred to the Severe and Brittle Asthma Unit in Birmingham, hopefully there isn't too long of a waiting list!

My lungs have been giving me hell for the past week or so. It's coming up to Christmas, I don't want to end up being admitted :( I'm trying very hard to keep myself well enough to stay out of hospital. I have no idea what has caused this latest flare up but it's making life very difficult :( I'm very much hoping that this is a blip, I'm trying not to stress that this is going to create problems with my return to nursing.......

Various other appointments that I've been waiting a long time to happen are also happening, all in all, it feels as though life is starting to move on :)

Monday, 28 November 2011

I'm winning!

Well this is a long overdue post, and finally I have something good to write about!

I had to travel to London for a hearing to decide whether I could return to working as a nurse. To cut a very long story short, although this whole nightmare isn't over, I've been given the go ahead to go back to nursing!!!! I've been off for 4 years so I need to get myself on a Return to Practice course before being allowed to return to my old job. I'm happy with that, it's only a 4 month course, and will help update me but also help me with gaining back my confidence. I've applied to start a course in January, so now I'm just waiting to hear about that :) :)

This hearing was the reason I was so desperately trying to keep myself out of hospital, that I mentioned in my last post. Since my last post I've had a further hospital admission, but I know that was caused by me stressing myself out over the hearing. Even though my lungs have been a complete nightmare over the past few months, I'm not overly concerned that they're bad enough to stop me from working. The prophylactic Doxycycline seems to be helping, and now this period of stress is over, I'm hoping that I can get these lungs behaving themselves again. Well, as behaved as they're ever going to be!!

So there we have it, 4 years of seemingly never ending stress, worry and fighting has finally started to pay off :) Now, I just need these lungs of mine to cooperate with me just a little, to calm down as they're still on the twitchy side.......

Methotrexate has been brought up yet again as a potential drug to try, I don't know anyone who has been on Methotrexate for asthma, so if anyone has any input/advice/experience, I'd be very grateful to hear what you have to say!!!!!

Sunday, 23 October 2011

Time flies!!

Wow, I am a bad blogger! So much time has gone by since my last post, and life has been ticking along in its usual manner. 

Since my last post, I've had a further 2 chest infections and my diagnosis of "mild bronchiectasis" is now official :( I'm on a course of Doxycycline for a chest infection right now, and when this course finishes I'll continue to take it as a prophylactic measure...... fingers crossed that it works as the past 2 months have been pretty miserable. I feel constantly ill, my peak flows are all over the place, my oxygen saturations are crap. Sometimes I feel breathless and wheezy at rest, and other times I'm okay as long as I don't too much. I've been off work sick more than I've actually been at work over the past few months, I spent the last week in and out of hospital. I was so desperate to avoid staying in hospital on Friday that I resorted to using a stupid amount of Symbicort (until I was shaking badly and felt very sick) and nudging up the marker on the peak flow meter so I could prove how much I had improved to be discharged. I know I know, I am an idiot but if I'd had any concerns that I was going to deteriorate or actually needed to stay in hospital, I would have stayed put and behaved myself. I've got my reasons for desperately trying to keep myself out of hospital for the next few weeks, which I'll talk about at a later point. Just for the record, if I do need to be in hospital, then of course I will get myself help and allow myself to be admitted!

Right, now I have got that little whiny rant out of my system!! :) 

Over the past 4 years I've lost weight, gained weight, lost weight, gained weight...... it's got to the point where I am disgusted with myself and my eating habits so I've decided to do something about it (in a healthy way as my previous weight losses were all achieved unhealthily). For ages I blamed it on the steroids, and whilst they probably have played in a part in my weight gain, I know that the main problem has been my laziness when it comes to food - I'd rather eat chocolate, crisps and cakes rather than cook a meal, and that even includes putting a ready meal into the microwave!! Pure laziness!!!!!! I've just done a week on WeightWatchers, and I lost 5lb :) :) I know the initial weight loss is water loss too so I'm not expecting that every week, but I am pretty happy with that! It's nice to feel proud about something :) Before I got this spell of chest infections, I got into playing Zumba on my Wii, it's so much fun!! Hopefully, my lungs will calm down soon so I can incorporate a little exercise into my WeightWatchers plan and maybe help the lb shedding along a little :)

Saturday, 3 September 2011

..... and breathe........

I finally made it home on Wednesday - yay!

On Tuesday I had a chat with my consultant, it turns out that they'd grown Staph Aureus from my sputum culture. I was not expecting this at all, but it explains why my lungs have acted in a completely different way during this admission. I'm still a little confused though - I didn't feel that I had a chest infection, my sputum definitely didn't look infected, there was nothing of note on my chest x-ray, and I was only spiking low grade pyrexias. A few months back, there were discussions about me potentially having Bronchiectasis. After the CT scan it was decided that the thickening in my lungs wasn't severe enough to diagnose me with Bronchiectasis, however, after this most recent admission, my consultant thinks it's something we might need to look at again.

I've had a course of antibiotics and whacked up to Pred back up to 60mg whilst in hospital, and eventually my lungs started to behave. My consultant hopes that this episode of staph aureus will be a one off so he is reluctant to do anything just yet, I've already had a trial of Azithromycin which didn't appear to have any benefits (but I do seem to have had 2 episodes of chest infections since stopping this trial, and I very rarely get (got?) chest infections so maybe it was making a difference which I can only see now??). So the 'plan' is to wait and see what happens! I seem to do a lot of that!!

Since being home I'm caught in that horrible place of desperately wanting to reduce my Pred as I'm finding the side effects hard to deal with, but at the same time, knowing that I need the Pred to keep these lungs working :(

Anyway, I'm very glad to be home! There is nothing like sleeping in my own bed and having lots of Tommy cuddles and kisses :)

Monday, 29 August 2011


Well, this post is probably going to be a bit of a jumbled mess to read. I haven't posted for a little while as I haven't had anything worth writing about, but now.... well the point of this blog was a place to vent about these lungs of mine......
A couple of weeks ago I had a cold, I felt a little crappy and had a day off work - mainly due to lack of sleep through coughing and wheezing all night rather than feeling unable to work.
I returned to work and all was well for a few days until one afternoon I felt breathless, wheezy and my inhalers were completely useless. I wandered over to see my respiratory nurse who gave me a neb and sent me to A&E. The Dr who assessed me in A&E used to work on the respiratory ward so knew my history, she refused to discharge me even though I soon picked up and sent me to the Acute Medical Unit for observation. I convinced them I was fine, (I really thought I was!), the Dr went away to write my discharge letter, by the time she came back I was in the middle of a severe asthma attack. I hate it when they come on so quickly and severely like that.
So here was night one; oxygen, back to back nebs, IV magnesium and aminophylline, blood gases, reviews by ICU Drs. By the next morning I had settled down and was transferred to the respiratory ward.
I can't really remember the sequence of what has happened since. IVs, nebs and oxygen have all been weaned down and stopped in preparation of discharge, only each time for me to deteriorate and have to start them all up again.
Yesterday, day 9 of this admission, I finally felt good! I went for a little walk, peak flows picked up, I thought I'd be able to go home today. At about midnight I started to feel wheezy and started coughing, a couple of nebs later and it was time to get the Drs involved. Numerous, painful attempts to get cannulaes in and to obtain blood gases, and reviews by 4 different Drs later, it was decided I needed to be transferred to ICU. I've been transferred to ICU many times, this time was horrendous :( Each time I've been previously, I've either been so poorly that I don't remember it or not that bad so its more for observation and intensive treatment.
This time I get there and the Drs were swinging between intubating and waiting to see what happened as my most recent ABG was looking more positive. Hearing and watching them prep the intubation trolley, having all the staff come piling into the room to assist - I was so scared. The decision was to watch and wait, which turned out to be the right decision. I'm now back on the respiratory ward feeling much better than last night!

My lungs have never done this before. Its 'normal' for me to come in, pick up, deteriorate, slowly pick up, maybe have a few tiny blips and get discharged home. I've never had so many cycles of getting off all medication in preparation of going home, only to have a major setback and starting all over again.
I'm very concerned that the pattern of my asthma has changed to something even harder to control. I've had a pretty good year in controlling my asthma and keeping out of hospital, this admission feels like I'm right back to square one. I know I'm most likely being over dramatic and all doom and gloom. I think I need to see my respiratory nurse and consultant tomorrow to discuss what has happened, and get home to allow myself time to rest and take in everything that has happened. Deep down, even though my asthma is unpredictable, I do feel that I have at least a little understanding of what is going on (whether I genuinely do have that understanding or just think I do is another matter!), and right now I have no idea what is happening, what will happen, what has happened.... and in all honesty, I find that pretty damn scary.

Sunday, 24 July 2011


Following on from my last post, I'm VERY pleased to be able to report that lovely Kirstie got her new lungs :) She is recovering well, she is one amazing girlie.

My last post about myself was pretty miserable, so lets move onwards and upwards!

I've had lots of work related stress over the past few weeks. I was told that my return to work was only a temporary 2 month agreement due to funding issues, then I had to find another position elsewhere in the hospital. This came as quite a shock to me! My union rep was on holiday, the human resources manager was never in the office when I tried to phone and took it upon himself to (very professionally) ignore my emails. There is a real shortage of jobs in the hospital at the moment so chances of finding a suitable position for me to transfer to were not looking good at all.

It appears that me returning to work and not holding any grudges about everything that happened has reflected really well on me. Also, I've gone back and made the role my own, I keep being told what a good job I'm doing and thanked for all my hard work - the funny thing is that I could work harder if I pushed myself, I guess they have low expectations considering the person who was in the post before me! Anyway, all this meant that I had a few key people in the department fighting very hard to keep me. Last week the manager decided that this talk of me leaving the department next week was all a big misunderstanding, and that he hadn't meant that at all! Now, he told me in the corridor and sent me a 2 line email telling me that I needed to look for another position, so I know full well it wasn't just a misunderstanding. It seems like he has either changed his mind, or realised he made a mistake, and rather than just say that, he is backtracking. I don't care either way, I've settled in really nicely so I'm glad to be staying. I'm extremely glad to not have the stress of being back on the redeployment register too :)

The lovely people I work with had arranged a little leaving party for me and bought me presents! As they'd already bought the presents they still gave them to me, chocolates which I shared with everyone, and a lovely bracelet. I felt so bad taking them as I wasn't leaving, but at the same time, most of these people I've only known for less than 2 months so I was really touched that they'd done that for me. I do work with some lovely people :)
Oh and that reminds me, remember in one of my previous posts I was talking about how I didn't want to return to work and be the 'social butterfly'?! Well, I only found myself organising the Christmas party!! I just can't help myself, I love doing things like that! So, I've decided to go with Becky's wise words that I'd be betraying myself by stopping myself from doing the things that make me happy, rather than betraying myself by going back and pretending nothing happened. My thoughts are that we spend so much of our lives at work, it's too much time to not be happy or not get on with your colleagues.

In other work related happy news, Monday is 25th July. I've found someone else in the office who is also a Christmas fanatic, so we're going to celebrate Christmas in July!! I'm baking some mince pies, she is going to bake a christmas cake, and I'm going to dig out the tinsel I left behind and throw it around. I must admit, most other people looked rather horrified at the idea, but I'm sure that we'll force them to enjoy themselves for at least a few minutes ;) On that note, there are only 154 days until Christmas!

Thursday, 7 July 2011

Do something amazing!

This week is national transplant week! I wanted to make a post asking people to keep my friend in their thoughts, then I thought it would be a great opportunity to talk about organ donation!

My lovely friend, Kirstie Tancock, is very poorly in Harefield Hospital. You can read her blog here. She has cystic fibrosis, and is in desperate need of a lung transplant. Please could people keep her in their thoughts and/or prayers. She is so poorly that this is her last chance to get some new lungs before she gets too ill for transplant. Thank you x

I've been registered as an organ donor for as long as I can remember. I know my lungs won't be much good, and I suppose my heart isn't in the best condition, but other parts of my body could possibly help someone! I completely respect that people have their own thoughts and feelings, but I don't understand why more people aren't registered as organ donors. Would you take an organ transplant if you were in need of one? Well, why aren't you willing to do the same for someone else?!
If there is anyone who read this, who isn't a registered organ donor, please give it some thought. This website is a great place to find out more, and you can register here too.

Finally, please watch this video by Tor. Tor has Cystic Fibrosis and has been on the waiting list for new lungs for 4 years now.

Three people die each day because there are not enough organ donors

50% of people waiting for a transplant die whilst on the waiting list

1 person can save 9 lives

Sunday, 3 July 2011

Scary medications

I've been lying low and keeping quiet lately, 'things' aren't going so well and posting the ins and outs of my life online doesn't really appeal to me! So, concentrating on these lungs of mine;

I had a review with my respiratory consultant, we agreed that Azithromycin wasn't doing anything for me so that was stopped. He brought up Methotrexate. When I hear that drug I automatically think 'cancer', which leads to 'horrible side effects', so I said I was pretty reluctant to take drugs like that. Since the appt I've read up on Methotrexate and seen that it's actually used in a few other conditions too, and some people with severe/brittle asthma have found it very helpful. Food for thought.... I'd love to hear any experiences from anyone who has taken it!

I mentioned in my last post that I'd been feeling pretty unwell. This week it got worse, I rarely get chest infections but I really felt like I had one. So I made an appt to see my GP that afternoon, by the time of the appt I felt better. I HATE it when that happens!! Obviously I like feeling better, but it's so annoying when I end up saying - I feel okay now but earlier I felt really ill and was coughing up gunk blah blah blah. Anyway, if it had been my old GP I would have cancelled the appt but my new GP is so lovely. He has A&E experience so he understands asthma that can quickly deteriorate, for me this is great! Outcome was, I have a course of antibiotics to take and had to bump up the Pred again :( I felt so much better after a few days and my peak flows have started to pick up again, so it's all good :)

Friday, 24 June 2011

Playing it safe

Well, my plan to blog more often clearly failed! I haven't really had anything to write about though, and I didn't want to write rubbish that even I found boring!!

Work is going well. Whilst I was away lots of new people were taken on, and I now sit in a different office with different people. It's good as I don't need to worry about my previous dilemma of feeling bitter towards the people who treated me rather unfairly - I can happily be myself at work :)

Yesterday, my respiratory nurse came up to the department to do some training on asthma. It was basic, general asthma education rather than focusing on brittle/severe asthma like I was expecting, but it sounded like everyone found it useful.

Today I had a review with my respiratory nurse. I keep a peak flow diary but every so often I get bored with it and give up. Since being back at work I've been good and religiously kept it. A pattern has emerged; as my working hours have increased, my peak flows have gone down. Even though it's so blatantly obvious, I hadn't made that connection, it took for the nurse to point it out!
I've been increasing my hours each week, and in all honesty, I felt that I could have easily worked more but I did as I was told as increased my hours slowly. This week I worked 9am-3pm, and the plan was to work 9am-4pm next week, then full time hours thereafter. After my respiratory review, I wasn't sure whether to say something and ask to keep my hours at the same, ask to decrease them, or just wait and see if my lungs settled down. I was off work for 15 months, on one hand I think that most people would have trouble readjusting to working hours, and I have a lung condition on top of that, then on the other hand I think I'm just being pathetic and stupid and need to just get on with it!
Anyway, this week I've been experiencing some chest pains (coronary artery spasms resulting from my heart attack, I just have to take some GTN spray and I'm fine), and headaches. So along with the increase in asthma symptoms, I decided I was going to say something. I went to my line manager and said that I might have to slow down the increase of my hours to full time. As soon as I explained that I've been really tired, finding mornings hard and feeling generally shit, she straight away asked what I was going to do about it. It turns out that the asthma education they received yesterday has really made a difference! They'd heard about peak flows and diaries, and because I had my review today, I had mine with me so I showed it to her. She straight away recommended that I come in later next week and see whether that has any effect on my lungs in the morning. Also, I don't increase my hours, so I'm actually going down an hour and working 10am-3pm next week. I do feel a bit bad for being so 'pathetic', but I hadn't taken time to think about how I've been feeling, and actually, I haven't felt too great this week!

I work on the third floor of a building, I used to use the stairs unless I was feeling really bad, but these days 3 flights of stairs is not a good idea so I always use the lift! The lift is out of action on Tuesday for routine maintenance. I mentioned it to my line manager, I said I was going to come in earlier than normal so I could use the lift before work started on it, but no one else was very happy with that idea! Then, some bright spark mentioned that if my lungs did misbehave, it would be an absolute nightmare to get emergency help. The managers are so incredibly twitchy where I work, they seem convinced that I'm about to die any minute. If anything does happen and the plan I had to agree to to keep me 'safe' doesn't go smoothly, I'm pretty sure I won't be allowed back to work at all. Therefore, I've agreed to take the day as annual leave, I'm still owed loads of annual leave from last year which I probably won't get so I guess it benefits me to take it. I'm not entirely happy; I feel that people I work with are trying to decide what is best for me. But, I can see that if anything bad at all happens then that will be enough to convince management I shouldn't be working in that environment, and that will be the end of working there! Also, I had a battle convincing Occupational Health to let me back, they say there is a very good arguement that I shouldn't be working with unstable asthma. I need to keep these lungs as well behaved as possible whilst in this delicate situation of convincing people that I'm well enough to be at work!

Playing it safe doesn't sit comfortably with me at all, but I plan to do something nice on Tuesday rather than sit at home feeling that I should be at work. I can't say I ever turn down the opportunity to sleep either, so I will make the most of the extra hour sleep a day I'll be getting next week!

Thursday, 9 June 2011

When it all goes to plan

After a looooooong time of living in a state of chaos, it feels like my life is settling down and starting to go the way I'd like it to!

I'm back at work and it's going well! I feel incredibly stupid and it takes me forever to do anything, but I'm slowly building my confidence back up. I've only been working 3 hour days so far, which although has been nice, at the same time it's been a little frustrating as I feel like I'm just getting into my work then it's time to go home, then the next day I have to start all over again. I'm increasing up to 5 hour days next week and I'm actually rather looking forward to it (someone needs to remind me of all this when I'm back working full time and wishing I didn't have to work for a living!!!!)

Now, this is the temporary admin job I'm talking about. I'm sure most of you know that I'm actually a registered nurse but was stopped from working as a nurse about 3.5 years ago due to health reasons. I had to fight hard to be allowed back to work in an admin role, and fighting to return to nursing sometimes feels like a pointless, endless, unwinnable task, but giving up has never really been an option to me.
Today I had an assessment, the report from this will have a BIG impact upon what ultimately happens regarding my nursing career, I'd actually go as far to say that my future nursing career was dependant on this report. I hoped it would go well, but I've learnt the hard way what happens when I get my hopes up. The assessment went so much better than I hoped, I can't tell you how happy I am :D The report still needs writing up, submitting to various people, then I need to attend a hearing so it's not a case of me being able to return to my old job, but right now, my 'arguement' to return to nursing is the strongest it has been since this all started :D :D
{I'm still very wary of being too positive and expecting a definite return to nursing, there is always a little part of me waiting for something bad to happen/crop up. So for now, I'm just happy that things seem to be looking up).

Then we move onto those little lungs of mine. Would you believe that they're actually co-operating with me?! I've started the slow decrease in Pred and so far my peak flows are holding. My peak flows aren't great, actually they're pretty awful compared to my best, but symptom wise things are okay. I've learnt over the years to pay more attention to my symptoms rather than go by a peak flow chart alone, for me the biggie is how well I sleep. Right now, I am waking up needing Salbutamol, but I'm easily getting back to sleep, and when I get up I feel rested. This is good :D

I like it when life feels good :D

Saturday, 4 June 2011

I survived :)

Surprise, surprise, my return to work was absolutely fine ;)
I got out of the lift, looked down the long corridor that I needed to walk down, took a deep breath then one of the girls I used to work with popped out of the kitchen and saw me, so I was able to walk down talking to her. That was a massive help!

The department has expanded since I was last there so there are quite a few new faces. It was really strange, it didn't take long for me to feel like I'd never been away. Time goes by but not much changes!! I am doing a slightly different job, but I know the basics of it so I'm picking it back up. The people I'm working with are being great too, and don't seem to mind when I'm asking them stupid questions that I really should know the answer to. I couldn't even remember my usernames and passwords so everything has had to be reset for me!

I'm going to try to explain something without going around the houses and confusing everyone and myself. When I initially went off sick, my work friends kept in contact with me and I met some of them at weekends/evenings. Gradually, it became apparent that management had a problem with me returning to work there, and eventually I had less and less contact with people from the department. Partly because I was pretty angry about what was happening, and partly because (they said) they felt awkward about what was happening and didn't know what to say to me.
An office temp was brought in to do my job, my desk was emptied, and all personal items put in a carrier bag which I was told were on a shelf for me to collect.
I got an invite to the Christmas party the evening before the event, and the text was something like 'hi, we're having the christmas party tomorrow, we didn't invite you as we didn't think you'd come, but {the manager} thinks we should have invited you. So, do you want to come? I can email you the menu if you do'. I declined the offer as I didn't really feel welcome!!
When I previously worked there, I was the social butterfly. I was always walking around talking to people, arranging department night outs and christmas parties. I vowed to myself that when I finally returned to work that I wouldn't go back to how I used to be, I'd turn down invites to go out, I'd just be there to work rather than be social.....
However, I just can't help myself!! I worked a total of 9 hours last week, and I've already been drawn into a conversation about previous department nights out, how we should all get together for another night out drinking cocktails, laughing and joking..... It's natural for me to be like this, I'd have to try really hard to go to work and not be socialable, and I think I'd hate that.
BUT (and this is the point of this ramble), I can't help feeling that I've betrayed myself in some way. They treated me really horribly but I've gone back and behaved like it doesn't matter. On one hand I feel disappointed in myself that I've let it all go, on the other hand, I feel like it's a good thing that I've let it all go and that I'm not holding any grudges..... sigh....
In any case, I think I've learnt my lesson that management are managers, not friends (in this case anyway). They've hardly acknowledged that I've returned to work and absolutely nothing has been said about the past 15 months! I guess it's best that I(/we?) just move on.

Anyway, that aside, I'm really enjoying being back. I like having a purpose to my day, I feel better in myself when I've done something productive, I feel happier when I have contact with people, when chatting and laughing is part of my day.

I think adrenaline has kicked in and helped me out this week. I've been seriously lacking in sleep, from both miserable lungs and not having re-established a work sleep routine. My morning peak flows are not great at all, and I'm having lots of attacks. They're mainly in the afternoon/evening which makes sense as that's when I'm feeling most tired, and they're relatively short and easy to get get in control of, which is unusual for me but I'm not complaining!

So far, so good :D

Tuesday, 31 May 2011


I go back to work!! I'm absolutely dreading it, but I know it will be fine once I'm there. Over the past few nights I've been dreaming about it, not quite nightmares but they've been pretty horrible dreams. I wouldn't have said I was particularly worried about returning to work but I guess my anxieties have been manifesting themselves in my dreams. I'm only there for 3 hours and I think it'll be that way for a week for so, then I'll gradually build up to full time hours.
I got fed up of the lack of communication so emailed everyone I could think of last Friday to push them along. I'm now wondering why I did that when I could have sat quietly at home and been forgotten about, but I KNOW it will be fine once I'm there. Once I've walked into the office and spoken to a few people, it will be fine *repeats to self*

I was thinking earlier that this has come at an inconvenient time considering the state of my stupid lungs right now. I've had to whack the Prednisolone back up to 60mg, which I'm really not happy about but I was even unhappier with my sats of 88% and potentially needing to go back into hospital!
Then I thought some more about this; my 'good' days are definitely less and and less. (Just to say, I know that my bad days are nothing compared to some other people). Over the past year and a bit I've learnt how to manage my asthma better, well better than I was anyway! One example; if I can't sleep during the night then I'll sleep during the day - my lungs tend to settle down at about 7am after a rubbish night. Chronic lack of sleep due to horrible lungs generally comes before I get to the point of needing hospital.
Once I'm back at work, obviously I can't do this. I'm worried that things like this are going to cause a problem with my drive to remain working rather than be unable to work for health reasons. I guess there is no point in worrying about that now though!!

Anyway, I didn't get out of bed until after midday for the reasons I mentioned above, so my chances of getting to sleep at a decent hour in preparation for getting up by 7am aren't looking too great right now.
It will be fine. It will be fine.

Monday, 23 May 2011

Agreeing to be different

I suppose this follows on quite nicely from my last post.

I've mentioned before that I volunteer for the Samaritans. I've been doing it for about 8 months now, I'm still classed as a 'new Samaritan', technically still in training, I have 5 shifts left before I get signed off and lose the 'new' to become a Samaritan :)
We have to commit to a certain amount of training hours a year, a 3 hour shift a week, and a 4.5 hour night shift a month. I think the commitments are different for individual branches. I have my last 'new Samaritans' training session next week, then I'll be attending the yearly refresher courses starting next year.
I don't have a problem with the commitments, but I have found that my lungs aren't particularly happy when it comes to night shifts. The early hours of the morning are when my lungs normally play up, so being on the phone talking to a potentially distressed or suicidal person whilst struggling to breathe is not ideal! So far that hasn't happened, I've been wheezy and coughing but not to the point where I'm struggling, and thankfully this hasn't happened when I've had the distressed callers, I've been lucky in that it's only happened when I've been talking to people who want some company in the middle of the night, so I don't feel quite so bad if I have to keep coughing and apologising!!
Also, I don't get home until 4am, and that's if I manage to leave on time. Obviously, if I'm in the middle of a call I can't go home until the call has come to an end. My lungs invariably play up on the 35 minute drive home, throughout the little sleep I get and into the next day.

I know that when/if I return to work as a nurse I'll be able to get out of doing night shifts if it becomes a problem. I thought about asking to be allowed off Samaritans night shifts but I decided against it; I don't really like to make myself different to other people, and I thought I'd manage unless it became a real issue.

The branch director phoned me the other day to ask if I'd like to be exempt from night shifts on health grounds. After umming and ahhing for a bit, I agreed. I guess when it comes down to it, it is a volunteer role, I'm happy to give my time and money (petrol costs), but I shouldn't let it have any impact on my health.

On one hand I feel guilty, like I've used my lungs to get out of something that majority of people don't like doing. Also, it's often the case that you get the most 'rewarding' and genuine calls during a night shift, we're more likely to get people calling who are in distress in the middle of the night rather than people phoning to hurl abuse down the phone or the sex callers. So I'm going to miss out on those calls.
On the other hand, I don't want to do night shifts anyway, my lungs always play up during/after a night shift, and it's stupid of me to do something that I don't have to which makes my lungs unhappy.

I did my last night shift on Saturday night, I didn't leave the branch until 4am so by the time I got home and into bed it was almost 5am. Then I hardly got any sleep through wheezing and coughing. A perfect example of why I'll be better off without doing night shifts! I feel like it takes days for me to recover afterwards.

So, the fact that I don't have to work night shifts as part of my Samaritans commitment makes me different to most of my Samaritan colleagues. I've decided it's the best thing for me and my health, but I still feel guilty about it. I guess this is part of me trying to accept that having brittle asthma does make me different to other people.
I'm trying to sell it to myself that if I accept little differences, then hopefully that will prevent bigger differences, little differences = not working nights, bigger differences = asthma ruling my life. If I accept that it's better for me not to work the night shifts, hopefully it will stop the instances of asthma symptoms/exacerbations caused or contributed to by working during those early hours and lack of sleep, and maybe even reduce potential hospital admissions.

But I still feel bad that I've been given special treatment.

Tuesday, 17 May 2011

I hate to admit it, but.....

.....I'm exhausted.

For years I've been told that I need to take the time to recover after asthma attacks and hospital admissions. I've always laughed it off, I'm far too young to need to 'recover', all I do is sit around in hospital, surely that's plenty of time to so called 'recover'.... in case you couldn't tell, I have big problems in using the word recover in relation to me!

When I first started to have hospital admissions over 5 years ago, I used to return to work the day after I was discharged. Nobody paid too much attention, I used to keep it quiet as I knew people would disapprove. Eventually Occupational Health picked it up once I qualified as a nurse and was working under a manager who knew I was in hospital, as opposed to agency work and student nurse placements where no one really cared as long as I did what I was supposed to do. Looking back, I can now see that I really wasn't helping myself by doing this, my admissions were so frequent but I just couldn't see (or refused to) that I was making myself worse by pushing myself. I worked 60 hour weeks for 3 years, that would be hard on someone who was completely healthy, nevermind someone who was struggling with their health, and frequently in and out of hospital.

Even though I can see this now, I find it so hard to accept. During this admission I was pushing for discharge, one of my respiratory nurses came along and tried to make me see that I needed to rest. Rest?! I laughed and gave her my usual spiel of not being an old person, and I wasn't planning to go home and run any marathons. We always have the same conversation, I'm sure she knows what I'm going to say before I open my mouth, but... I just can't accept that I need to rest/recover/take it easy.
When I eventually did make it home, I can't say that I did much but I felt awful afterwards. I find it impossible to go home and do nothing though, I live on my own and nobody else is going to do things like clear up after baby Tommy (my gorgeous cat), feed baby Tommy, make me something to eat and drink, tidy up, etc etc.

I guess it's all part of my determination and sometimes stupidity in refusing to let this rule my life more than it already does. Yes, I need to be in hospital every so often, but look, I'm fine now, I'm just like any other 'normal' person.
But I'm not, I have brittle asthma, I have life threatening asthma attacks, I've come very close to dying a few times and I'm lucky to be alive and not have more long term complications. This is another thing I find hard to say, it sounds so dramatic but it's the truth, it's what I'm told by my Drs and nurses, and what is written on my discharge summaries.

Meh, see now I want to delete all these because it sounds so over the top. There are a few people I've come across who are all doom and gloom and drama and look at me, I don't want to be like them!!!!
But no, I will post this, I guess it's been therapeutic in a way, to admit how I feel when I spend most of my time refusing to accept it, accept that my stupid lungs do make me different to other people, and that 'recovering' from acute attacks/admissions is part of my condition.

Friday, 13 May 2011

Hospital and escape!

Well for a start, I'm very confused over where my last update is! I know it was posted, I had someone comment on it (thanks Wendy) but now there is no sign of it! Weird.....

In the early hours of last Friday morning I eventually gave into these stupid lungs of mine and called an ambulance. I don't remember very much after that point, I'm told that when they arrived my sats were in the 60's% and I was given lots of adrenaline, nebs and oxygen. I became more alert not long before we got to hospital and had the paramedic telling me that he hadn't seen me in a while. It's been well over a year since I last called an ambulance but there seems to be one poor paramedic who gets me a lot and even though time passes, I guess he remembers me as I have a tendancy to go into respiratory arrest on him!
When I got to hospital I felt slightly better but ABGs were pretty shocking so BiPap was discussed, thankfully they didn't feel the need to go down that route as I can't imagine that I'd tolerate that very well! So instead I had IV magnesium, more back to back nebs and O2, and my old friend IV aminophylline.
Friday night I started to deteriorate again with aminophylline, O2 and back to back nebs so I was given more IV magnesium and my lungs slowly calmed down.
IV aminophylline came down on Sunday morning but Sunday night was a bit of a nightmare. pCO2 rose, pO2 dropped and I spent most of the night on 100% O2 as anything less would make my sats drop below 90%.
Monday morning I finally felt better and managed to get some sleep during the day.
There seems to be a common theme whenever I'm admitted to the respiratory ward - most of the other patients in my bay are crazy! Elderly old ladies with dementia and infections are not a great combination!!! There was a very sweet old lady in the bed beside me, she was very unsteady on her feet and when night time came, she just got up and wandered around until someone found her and walked her to the bathroom. Monday night I had the shock of my life when I'd just gotten to sleep and she fell on me! LOL!!
Tuesday the IV aminophylline finally came down, and eager to get home I stopped my nebs. I'm not allowed home nebs so have to be off them for 24 hours before being allowed home. Tuesday night, one of the other ladies who was a 79 year old tiny thing, caused such a fuss and was agressive that security were called up. It was so funny, these 2 big security blokes turned up to control this tiny old woman!
Wednesday I was initially aiming to go home but my peak flows had dropped and I was wheezy so I very reluctantly agreed to stay another night. Wednesday night whilst I slept, 79 year old agressive crazy lady came over to my bed, pulled back the covers and shook me awake! She was looking for her husband, when she realised I wasn't him she went onto the next bed and woke up the next person!! Haha if it hadn't have been me being woken up in the middle of the night I think I would have found it quite hilarious!
Thursday review came and the stupid dr decided my peak flow was still too low to discharge me. I considered self discharge but thats not really a route I want to go down as it looks so bad in my medical notes, and if I did ever end up being readmitted soon after then it would be my own fault. So I kicked up a little fuss (I don't like to be too compliant ;-) lol)and finally agreed to stay again, but made it clear that I thought it was stupid to keep me in hospital just because they were worried low peak flows = massive asthma attack. Tuesday morning onwards I wasn't receiving any treatment that I don't have at home so I was literally sat there incase I became ill, and I'm more than capable of looking after myself at home.
Today, peak flows were still rubbish and sats were down. The poor SHO came along and I immediately started with my arguement that I wanted to be discharged. My consultant wasn't around this week and I wonder if I'd have been able to go earlier if he was. No one was willing to take responsibility discharging me with crap peak flows so another consultant came down to see me. Thankfully he agreed that they couldn't keep me in hospital just incase I became poorly, so said I could go home on the condition that if I feel even slightly worse over the weekend I go straight back in, and that I don't exert myself. Haha like that's going to happen!

So, I finally made it home! :D When I get home after a hospital admission I have to throw everything that has been to the hospital in the washing machine, I always feel dirty in hospital. So washing machine on, showered, moisturised (hospital makes my skin dry) and clean pjs on. Then I felt much better! Tommy baby had decided to be sick all over the floor at this point though, I swear, he'd gone walking around my flat being sick in different places, so that was a nice welcome home present lol. Then I had to clean out his food area and litter tray, by this point I was feeling pretty exhausted so I resisted the urge to get the vacuum out. I'll have to save that little chore for another day as I always feel pretty ill and exhausted for a day or 2 after a hospital admission. Then again, that depends on how long I can stand looking at the messy carpet for!

Tuesday, 3 May 2011

Postivity shines!

It's world asthma day! Only people I speak to and see on a regular basis know about my horrible lungs, I don't really publicise it or talk about it very much. Recently I realised I'm treating it as a secret, something I'm ashamed of because of the huge impact it has on my life. The past week or so I've been including asthma in my 'facebook life'. I posted a link to my Get it off your chest story, and I posted a status advertising world asthma day (granted I stole the status off someone, but that's only because it was so good!) The result has been people sending me messages who I haven't spoken to for a while; asking about brittle asthma, how it effects my life, and my medication. So there, I have raised awareness of brittle asthma and I resolve to stop hiding my condition :) I can't complain that the lack of asthma awareness when I hide my own condition!

This morning I had a work meeting with a HR manager and my union rep. I wasn't expecting much to come out of this meeting, there is a bit of a pattern to these things - I get my hopes up, come out of the meeting feeling unsure about what is happening, then over the coming days I feel disappointed and worse than I did previously when I realise I won't be returning to work anytime soon :(
Anyway, today was different!! I've been given a date to start a gradual return to work, it's 2 weeks away but I'm not sure Occupational Health will have had their input by then so it may be delayed.... but that is just basically ticking boxes as Occ Health confirmed I was fit to return to work ages ago and I'm not any worse since then.
I don't want to be too optimistic or positive about this until I actually return to work, I've built my hopes up many times to have them smashed when it all goes wrong.... but I can't help feeling good about this latest development :D

This isn't a return to my nursing position, that is a seperate ongoing battle, but I'm feeling quietly optimistic about that too. Playing a waiting game there right now.

And finally, I can't blog without giving my lungs a little mention. They're being a complete nightmare, at times I'm absolutely fine and other times I'm breathless and wheezy at rest so moving around isn't much fun! I don't know what to do or say, but I'm trying my best to avoid hospital and so far I'm succeeding!!

:) :) :) :)

Wednesday, 20 April 2011

Horrible lungs

My record run of avoiding hospitals has come to an end. I went almost a year without needing to go into hospital for treatment. I should clarify, I mean almost a year without needing to go into hospital since being diagnosed with asthma 6 years ago, I'd never been a patient prior to that!

Since starting Azithromycin my asthma has felt worse. I'm sure it's just a coincidence, but it means I can safely say Azithromycin hasn't made any improvement yet!

Last night I was in Exeter when I realised I needed to get myself to hospital. I could have gone to the nearest hospital where I always get admitted but because of my medical history and all the ED doctors know me, they automatically try to admit me and I couldn't be bothered with the battle and ending up having to self discharge.
So, I made the decision to drive back to the district hospital close to where I live. They only have a Minor Injuries Unit and no facilities to admit me, if I turn up there worse than they can deal with they call an ambulance to take me to Exeter. Last night was I confident I wasn't severe enough that I'd scare them!
I drove the 30 minute drive, I'd forgotten how horrible it is to drive whilst having a full on asthma attack, I've driven in worse states but it still wasn't comfortable.
Once at the MIU unit I had to sit around and wait to be seen, the duty doctor didn't seem to understand brittle/difficult asthma and couldn't get his head around the fact that I'm on long term high dose steroids, he kept asking the same questions as if he thought I'd made a mistake.
There was a lot of we'll give you a nebuliser then we'll wait and see if it helps, after 30 minutes you can have another one, we'll stick to salbutamol to start and then throw in an atrovent in a couple of hours!
Don't get me wrong, they doctor and sister were both lovely, and I wasn't life threatening or anywhere near that. I guess because in Exeter most of the staff know how poorly I get, they don't waste any time in treating me, often I feel like they overtreat me. I've never been made to sit and wait to see if I improve! It was a little frustrating as I knew I needed back to back nebs but it took them a little while to work that one out last night.

For majority of the time I was in the MIU I was the only patient, I heard the sister complaining that she had been on the go pretty much constantly all night which made me smile!!

After hours of intermittent treatment with nebs and oxygen I felt less breathless and wheezy. My sats were 93% and peak flow had gone up to 200. This is the other reason I chose to go to the MIU, I knew they'd discharge me with stupid clinical observations like that whereas Exeter would have never let me go! I genuinely did feel better though so it was fine :-)

After spending most of the day asleep I now feel much better than I did, but I am aware that my lungs are really not happy. I just hope there isn't a 'proper' hospital admission looming in the near future!

Monday, 4 April 2011

New drugs!!

Well, new drug to be truthful, but drugs sounded better!

Since my last post I've been really struggling, I've thought about calling an ambulance more than once but decided against it, which has turned out to be an okay decision as my asthma has become more manageable after every attack.

Today I saw my consultant, I've been wondering what the next move would be for a while now. It turns out that the CT scan I had done shows that there is some thickening and inflammation, but not enough to be diagnosed with bronchiectasis :) At least, I think that was what he said, for some bizzare reason I find it hard to concentrate on what my consultant tells me, I wait for a copy of the letter sent to my GP to make sure I've understood what was said!! He has suggested I start an antibiotic called Azithromycin, 3 times a week. If anyone has been on it I'd love to hear what you thought of it. He is going to write to my GP and get him to prescribe it, so I have to wait for that letter before starting.

I felt really ill and wheezy this morning, and in a way I was glad that I'd be able to go to see my consultant and be able to 'show' how I was feeling. Typically, by the time of my appointment I was feeling relatively okay! Peak flow and spirometry were a bit pathetic, but everything else was fine. I feel like such a fraud when I go in and say "I feel so ill, blah blah, can't breathe at night, blah blah" but I look fine!!! I hope that made sense, I don't like or want to be ill, but I wouldn't feel like such a fraud if my clinical presentation wasn't totally contradicting what I was saying!!!! That is the reason I took so long to be diagnosed too, my lungs have a magical ability to behave whenever I go to respiratory related appointment, but play up before and after!

My new favourite film is Phantom of the Opera. I'll know the words soon I've been watching it so much lately. One day I'd love to go to the theatre to watch it, this is officially now on my 'to do' list :)

Wednesday, 30 March 2011


feel free not to read this, I'm just so fed up that I need to get it out!

Todays plans were to go for a short walk, dye my hair, and make soup. Considering I only managed to get out of bed at 2pm, it's looking unlikely that I'm going to manage any of them.

I hate hate hate hate hate my horrible lungs. After an entire night of wheezing, coughing, using inhalers, sitting upright, dozing for about 10 minutes a time, oxygen sats of 82% - 90%, I feel awful :( I'm tachycardic, thanks salbutamol, but I've got to the point where the shakes no longer effect me (does that happen to anyone else? You have so much that you go past the shakes?? I get the shakes with back to back nebs, but not otherwise)

I've had the discussion with my consultant many times over having a home neb. He always refuses, he says if I need a neb I should go to hospital immediately as my asthma has a tendancy to rapidly deteroriate. He thinks I'm not responsible enough, if I had a home neb then I'd stay at home until I became very poorly.
But I don't go to hospital unless I feel my life is in danger, I just make do with my inhaler and spacer, which I've heard numerous times is as good as a neb, but I really don't think that it is!!
Maybe if I did call an ambulance every time I needed a neb, then he'd see my point, but I really really really try to avoid hospital/999 calls until I get to the point of knowing I need medical attention otherwise I'm in trouble.
I guess that statement might prove that my consultant is right, I am irresponsible when it comes to my asthma. I wouldn't let anyone else get away with what I do, but I'm different, I'll always be fine *roll eyes* then I have a shock which proves I'm not invincible and start to take care of myself, but then slowly revert back to my stupid ways. I'm incredibly blasé when it comes to my asthma, it frustrates other people, and at times frustrates me as I know in the past I've let myself get into dangerous situations because I should have acted sooner.

Anyway, after being sat down for an hour, my sats are 93%. See they're improving, I don't need to worry. (and before anyone says anything, I've always dropped my sats when my asthma plays up, I've had investigations but we're still not sure why it happens, it's not typical for an asthmatic, but it's typical for me. I was once sat in resus with sats of 78% but I really didn't feel too bad!!)

My chest is tight, my back hurts, my head hurts, my peak flow is 180 and as soon as I move to get a drink I become breathless and my sats drop, so as long as I stay here, sitting down, I should be okay. Just for the record, if I become worse then of course I will call an ambulance, I don't want to die, but I know my own body, as it starts to ease off I should be okay, until it starts over again then I'll have to reassess.

Meh. I guess it could be worse. I'm just feeling very sorry for myself. I've got an appointment with my consultant on Monday so I'll see what he has to say.

Monday, 14 March 2011


I didn't realise it had been quite so long since I last posted! To be honest, not much has happened....

I had a CT scan of my chest, I haven't heard anything back following this so I'm taking no news as good news and hoping that I haven't developed bronchiectasis. I had my DEXA scan today, the results are right on the border between oestopenia and healthy, not great but better than my last one in 2006 so I'm relatively happy with that :)

My horrible lungs are still, well, horrible! The last time I had a undisturbed nights sleep was last year sometime, I've just had to accept this is life now! I really notice my stupid lungs when I'm walking with other people, I can't walk and talk at their pace, I get breathless so easily, I find it extremely frustrating and embarrassing. Actually, I get very breathless when I'm walking on my own at my own pace, but I suppose I notice it more and feel more self conscious when I'm with other people :( I wasn't going to reapply for my DLA when it's expires later this year, but it appears that my optimism that my asthma was improving was just that, optimism :( Ahh well, it could be worse, at least I'm not in and out of hospital every other week like I used to be!

I'm still not back at work despite my numerous emails and phone calls. I've now been off for a year, granted it was almost 2 years last time this happened, but still, it's not helping my 'battle' to get back to nursing on wards when I can't even sit in an office..... it would have been so much easier for me to accept medical retirement back in 2007... but I refused to give up then and I refuse to give up now.

And apart from all that, I'm trying to keep myself busy so I don't have too much time to sit and dwell on things. I'm still enjoying volunteering for the Samartians, although it's disturbing how many sex calls or people phoning up to hurl abuse down the phone we get! I do my shifts in the afternoon or evening as my lungs don't like mornings, sometimes it can take a few hours for the wheeze and breathlessness to ease off. I'm having issues when it comes to night shifts - wheezing and coughing down the phone isn't great, so once I've completed all the nights required to become a fully trained Samaritan, as opposed to a New Samaritan, I might have to look at whether volunteering on nights is good for me.
I'm also making an effort to meet up with friends, and have fun drinking cocktails, my favourite pastime :D Haha seriously, I think it would be so easy for me to sit at home moping about how awful my life is, how ill I am blah blah blah, I'm making sure I have some fun times so life isn't all doom and gloom :)

Wednesday, 2 February 2011

Who wants a simple life?

Do you ever feel like life goes from one drama to another?

Asthma control is so so, could be better but could also be worse so I'm not complaining too loudly. My respiratory team now want to run tests to see if I have bronchiectasis, and I need to have a colonoscopy following some concerning symptoms involving blood. Fun times ahead :(

In other news, I had all my hair chopped off! It was down my back and now it's cropped really close to my head. It's a little shorter than I anticipated but I've received lots of lovely compliments, I'll be happier when it's grown a little longer so I can tuck it behind my ears.

I've also completed the first part of Samaritans training and shifts with my mentor, now I'm free to take calls without being listened in on. I was nervous about it but I found it easier to take calls without my mentor listening in, it felt more natural so that was good!