After my last whinging post, I thought I should write something less miserable and whiny!
I finally managed to have an appointment with a respiratory physiotherapist, which was much more helpful than I was anticipating :) She has written to my consultant to recommend that I start Carbocisteine, it's a medication which makes sputum less thick so it's easier to cough up. She went through the Autogenic Drainage (a breathing technique to clear sputum) and explained how we could adapt it to suit me. When a physio tried to go through it with me before, I really struggled with the control needed so I gave up with that technique pretty quickly! The physio also gave me an Acapella to use along with AD. I must admit, I'm quite lazy when it comes to doing things like this when I'm feeling well but that is what I need to be doing, so I can become better at doing it and increase the frequency when I'm poorly.
I've had to stop the steroid nebs which were started whilst I was inpatient at Heartlands. I started to notice that within minutes of using them, I was becoming wheezy, coughing, and my sats and peak flow were dropping. It's very strange as that wasn't happening when I first started on them! I spoke to the respiratory nurse at Heartlands, I was hoping she'd say to switch over to a different type of steroid neb but she said to stop the steroid nebs, go back on my original doses of steroid inhalers, and I'd be reviewed in clinic (I'm still waiting for that appointment!)
Oh and an update on the subcut Terbutaline trial. The team at Heartlands are claiming they didn't know anything about my cardiac history, and if they had known then they wouldn't have wanted to do the trial anyway! Absolute rubbish, I know it's been on letters from my local consultant, I'm on cardiac medication and I've spoken about my cardiac history - there is no way they didn't know! I think it's more likely that they overlooked it and only realised their error when I said I'd had some chest pain whilst on the trial (which I said was muscular pain anyway). I'm a little annoyed about that; a two week admission which was a bit of a waste of time! So, the latest update I had from the respiratory nurse regarding the results of the trial was that they think the subcut Terbutaline did help slightly (which I didn't think/see) but they're waiting for information from my local consultant about my cardiac history before making a decision on whether it should be a long term treatment for me. I don't think it helped anyway so I can't say I'm bothered by all this waiting for the decision!
Saturday, 27 July 2013
Saturday, 20 July 2013
Fed Up
So, time for a moan. I've had enough, nothing is straightforward in my life. Simple things that most people take for granted are such a struggle for me, namely breathing and being allowed to work.
I've just deleted a messy explanation of the work situation. I don't want to talk about it, I can't be bothered to talk about the details and background. Basically, I've got a month to get another job. Every job I go for is either ruled out by Occupational Health or they write a report which includes the helpful statements "I can't guarantee her attendance at work" and "she may need unscheduled breaks to use her nebuliser". Would you give me the job if you read that? I certainly wouldn't! It's not even as if I've got loads of clinical skills/experience which is going to give me an advantage in getting a job.
Anyway, Occupational Health have stated that they think it's unlikely I'm going to get another job by the deadline, and will be going on to recommend retirement on medical grounds. How many times do I need to fight this? I don't want to give up work. I don't think I'm 'sick' enough to have to give up work. I don't want to have to navigate the benefit system. I remember saying when I was allowed back to nursing this time, if it doesn't work out then I'll give up and accept I can't work. Now I'm back in that position and I still can't/won't accept it.
My lungs are very unhappy lately. The heat definitely isn't helping, I spend my days sat inside with the fan on, and only go out in the evenings when it's started to cool down. I've got myself signed off sick from work, partly because I really can't be bothered with work taking into account everything I've written above, partly because it's so hot on the wards that it makes my lungs even unhappier, and partly because the non clinical role I'm doing isn't that important that anyone even misses me when I'm not there.
I really feel that I'm heading for a hospital admission. I've felt this way for a week or so, but I'm trying my hardest to avoid it. It's my Nan's funeral, and I can't afford to go into hospital and miss out on potential jobs to apply for or interviews. Then there is the time of year to take into consideration, in a couple of weeks the baby junior doctors are released from university to start their first jobs in the hospital, I don't really want to be a patient then!!
Okay, I've got my moan and whine out. Time to stop feeling sorry for myself and think of a plan of some sorts. Having a plan always makes me feel better.
I've just deleted a messy explanation of the work situation. I don't want to talk about it, I can't be bothered to talk about the details and background. Basically, I've got a month to get another job. Every job I go for is either ruled out by Occupational Health or they write a report which includes the helpful statements "I can't guarantee her attendance at work" and "she may need unscheduled breaks to use her nebuliser". Would you give me the job if you read that? I certainly wouldn't! It's not even as if I've got loads of clinical skills/experience which is going to give me an advantage in getting a job.
Anyway, Occupational Health have stated that they think it's unlikely I'm going to get another job by the deadline, and will be going on to recommend retirement on medical grounds. How many times do I need to fight this? I don't want to give up work. I don't think I'm 'sick' enough to have to give up work. I don't want to have to navigate the benefit system. I remember saying when I was allowed back to nursing this time, if it doesn't work out then I'll give up and accept I can't work. Now I'm back in that position and I still can't/won't accept it.
My lungs are very unhappy lately. The heat definitely isn't helping, I spend my days sat inside with the fan on, and only go out in the evenings when it's started to cool down. I've got myself signed off sick from work, partly because I really can't be bothered with work taking into account everything I've written above, partly because it's so hot on the wards that it makes my lungs even unhappier, and partly because the non clinical role I'm doing isn't that important that anyone even misses me when I'm not there.
I really feel that I'm heading for a hospital admission. I've felt this way for a week or so, but I'm trying my hardest to avoid it. It's my Nan's funeral, and I can't afford to go into hospital and miss out on potential jobs to apply for or interviews. Then there is the time of year to take into consideration, in a couple of weeks the baby junior doctors are released from university to start their first jobs in the hospital, I don't really want to be a patient then!!
Okay, I've got my moan and whine out. Time to stop feeling sorry for myself and think of a plan of some sorts. Having a plan always makes me feel better.
Sunday, 7 July 2013
:(
I did have a few lung related things I was going to blog about at some point this weekend, but that post can wait.
This morning I woke up with a bit of a migraine so I got up, fed Tommy, took some tablets, put my phone on silent and went back to bed. When I eventually woke up I had loads of missed calls from my cousins and a voicemail asking me to phone. You know when you see loads of missed calls on your phone and your heart sinks; you know something bad has happened? So when I phoned I was expecting bad news. My Nan had a heart attack this morning and died. The family had been trying to get hold of my Dad to tell him, but they hadn't been able. I knew my parents plans for today, and knew I'd be able to get hold of him on his mobile. So I had the lovely task of phoning my Dad and telling him that Nan, his Mum, had died this morning. I can honestly say it was one of the worst things I've ever had to do. Obviously as a nurse I've had to phone people to tell them that a relative has died, but it's a bit different phoning my Dad with that news!
We moved from Birmingham to Devon when I was 15, and after then I didn't see any of my family who lived in Birmingham very much - we've never been the closest of families. Over the past few years, I've made an effort to reconnect with my grandparents and cousins when I've been in Birmingham for hospital appointments. My grandparents live really close to Heartlands hospital so I'd pop over after hospital appointments, and on this recent admission, I left my car with them and they came and visited me a few times. I saw them on Monday before coming back home. Nan had said how nice it was to see me, and how I'd come out of my shell and grown into a lovely young lady. It was really nice to see them too :)
It's a shock. I know Nan was in her 80's and was looking more frail every time I saw her, but her general health was good. I feel sad, but it's awful to admit it, I'm not devastated and I haven't cried at all. I feel like such a bitch, a horrible person. Why aren't I more upset? My grandparents were a big part of my life until I moved to Devon. I know how happy it made her that I'd gotten in contact recently and she'd seen me as an adult. I know my cousins are absolutely devastated. I know I'm not heartless, and I am sad, but...... but I really feel like a heartless bitch right now.
RIP Nan x
This morning I woke up with a bit of a migraine so I got up, fed Tommy, took some tablets, put my phone on silent and went back to bed. When I eventually woke up I had loads of missed calls from my cousins and a voicemail asking me to phone. You know when you see loads of missed calls on your phone and your heart sinks; you know something bad has happened? So when I phoned I was expecting bad news. My Nan had a heart attack this morning and died. The family had been trying to get hold of my Dad to tell him, but they hadn't been able. I knew my parents plans for today, and knew I'd be able to get hold of him on his mobile. So I had the lovely task of phoning my Dad and telling him that Nan, his Mum, had died this morning. I can honestly say it was one of the worst things I've ever had to do. Obviously as a nurse I've had to phone people to tell them that a relative has died, but it's a bit different phoning my Dad with that news!
We moved from Birmingham to Devon when I was 15, and after then I didn't see any of my family who lived in Birmingham very much - we've never been the closest of families. Over the past few years, I've made an effort to reconnect with my grandparents and cousins when I've been in Birmingham for hospital appointments. My grandparents live really close to Heartlands hospital so I'd pop over after hospital appointments, and on this recent admission, I left my car with them and they came and visited me a few times. I saw them on Monday before coming back home. Nan had said how nice it was to see me, and how I'd come out of my shell and grown into a lovely young lady. It was really nice to see them too :)
It's a shock. I know Nan was in her 80's and was looking more frail every time I saw her, but her general health was good. I feel sad, but it's awful to admit it, I'm not devastated and I haven't cried at all. I feel like such a bitch, a horrible person. Why aren't I more upset? My grandparents were a big part of my life until I moved to Devon. I know how happy it made her that I'd gotten in contact recently and she'd seen me as an adult. I know my cousins are absolutely devastated. I know I'm not heartless, and I am sad, but...... but I really feel like a heartless bitch right now.
RIP Nan x
Monday, 1 July 2013
Day Fifteen
Day Fifteen = home! Yay!!!!
Dr Mansur isn't around today so I'm not able to discuss the results of the trial with him or future plans, so that'll have to wait for my next clinic appointment which is apparently in about a month.
As promised, my peak flow chart from during the trial
You don't need to have any understanding of the trial to be able to interpret the results. Week one is the blue line, week two is the red line. I still don't know which week I had the placebo and which week was the Terbutaline, I suspect week one was the placebo. But, it's very clear that there isn't much of a difference! (The dip on day 5 of week one is when my lungs threw a little tantrum, which skews the results a little.) It's certainly not what a successful trial of Terbutaline looks like!
I'm so pleased that I'm going to be able to sleep in my own bed tonight, with my baby boy Tommy curled up beside me :) I'm just waiting for my discharge paperwork and medication to be sorted, then I can start the 3 hour drive home!
Dr Mansur isn't around today so I'm not able to discuss the results of the trial with him or future plans, so that'll have to wait for my next clinic appointment which is apparently in about a month.
As promised, my peak flow chart from during the trial
You don't need to have any understanding of the trial to be able to interpret the results. Week one is the blue line, week two is the red line. I still don't know which week I had the placebo and which week was the Terbutaline, I suspect week one was the placebo. But, it's very clear that there isn't much of a difference! (The dip on day 5 of week one is when my lungs threw a little tantrum, which skews the results a little.) It's certainly not what a successful trial of Terbutaline looks like!
I'm so pleased that I'm going to be able to sleep in my own bed tonight, with my baby boy Tommy curled up beside me :) I'm just waiting for my discharge paperwork and medication to be sorted, then I can start the 3 hour drive home!
Sunday, 30 June 2013
Days Thirteen and Fourteen
I still don't have very much to write! It's the weekend, hospitals are even more boring at weekends than they are during the week.
The trial has continued. I made a peak flow chart in Excel which has confirmed my thoughts, there hasn't been much of an improvement in my peak flows. I'll post the chart when it's complete, it's interesting to see the (lack of) results. Today is day twelve of the trial which means when the syringe is empty in the morning, that is the end of the trial!!!!
I'm hoping to go home tomorrow, mainly because I stupidly agreed to attend an interview on Tuesday because it was easier to accept the interview than explain I'm in hospital in Birmingham. I was planning on talking my way to being discharged tomorrow and if Dr Mansur decides he now wants to do the bronch, I could come back as an outpatient. However, whilst bronchs are normally done as an outpatient, considering how inflamed and sensitive my airways are, I wouldn't be relying on it being an outpatient procedure. I would be anticipating to stay in hospital at least overnight, and obviously if I could go home that would be a bonus! There would be the issue of getting back home when you're not allowed to drive after the sedation though......
Anyway, I've thought about it over the weekend and it's silly of me to go home if Dr Mansur wants to do further investigations. So, I'm hoping to see him tomorrow and discuss the results of the trial and whether he wants to do any further investigations. If needs be, I'll just have to phone the matron to explain and ask to rearrange the interview...... I can't complain, I was told I would be here for 2-3 weeks and I've only been here for 2 weeks so far.
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.
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.
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.
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