Day One

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

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

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

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

Dreams of a normal life

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

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

Plans!

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

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

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

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

Week Two....

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

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

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

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

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

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

Week One....

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

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

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

Nothing is straightforward!

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

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

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

Always

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

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

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

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