Sunday, 30 June 2013

Days Thirteen and Fourteen

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

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

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

Friday, 28 June 2013

Days Ten, Eleven and Twelve

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

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

I can't wait to get back home. 

Tuesday, 25 June 2013

Day Nine

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

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

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

Monday, 24 June 2013

Days Six, Seven & Eight

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

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

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

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

Friday, 21 June 2013

Days Four & Five...

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

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

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

Wednesday, 19 June 2013

Days Two & Three

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

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

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

Monday, 17 June 2013

Day One

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

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

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

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

Friday, 14 June 2013

Dreams of a normal life

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

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