I'm pleased to say that I'm over the drama of my last post! My appointment at the Severe and Brittle Asthma Unit in Birmingham is next week, I'm hopeful that something good will come out of it.
I've left my admin job - yay!! I'm now using up my remaining annual leave, then after Easter I'm going back to work on the wards :) I've got 2 weeks working as a health care assistant to get used to the ward environment again and shift work - it's going to be a shock to the system working shifts again! Then I start my return to practice course, and 6 months later I can re-apply for my registration. Once that is processed, I'll be a 'real' nurse again!! I don't think it's sunk in yet that this is all happening, after 4 1/2 years of constant battling, I've finally got what I wanted. Part of me is concerned that I'm not going to be able to do it, if I fail this time then that will be it, I'll be stopped from working altogether. But, I can't think like that, I've got to at least try - and I'm really looking forward to it!! :)
Thursday, 22 March 2012
Monday, 12 March 2012
Confused....
So, let me tell you a story. Hopefully writing this down will help me process this in my head....
Last week my asthma was really playing up. Monday I went to work and wasn't too great, so no one was surprised when I phoned in sick on Tuesday, then Wednesday, and then Thursday. Thursday night I slept really well and woke up feeling great on Friday, so off to work I went. As the day went on I felt a little sicky, and gradually started to feel wheezy. I went and sat in a quiet room with my inhaler, quickly I realised that it would be a good idea to get across to A&E. As I'm sat there thinking who I should ask to drive me around to the other side of the hospital, I realised that actually I was deteriorating pretty quickly and I made the decision to ask someone to call an ambulance for me. Within the 10 minutes (at most, to me it felt like ages) it took for the ambulance to turn up, I had seriously deteriorated. They whipped me around to A&E, where on arrival, I had oxygen saturations of 44%. This was with oxygen, nebs, adrenaline and I was being bagged. I don't remember any of this, I remember my sats getting down to 62%, realising I was in trouble and deciding it was probably best if I stopped looking at the sats monitor.
Thankfully I picked up relatively quickly and didn't need to be intubated or go to ITU. I went to HDU, then moved to the respiratory ward, then home today.
The consultant I saw in A&E told me how lucky I was. The paramedics who took me to A&E came and saw me when they brought another patient in and told me that they couldn't believe that I was ok after what happened. The professor I saw numerous times in HDU kept telling me, and the junior drs he was teaching, that sats of 44% is as near fatal as you can get without actually being fatal. The respiratory consultant told me that I'd been very lucky, and 5 more minutes without medical help would have most likely led to a very different outcome. I heard all this, I understood what they were saying. I guess because it's not the first time this type of thing has happened, I didn't dwell on it too much.
It was decided I could only go home with an EpiPen, I briefly spoke to my respiratory nurse specialist about it this morning. It was fine, I was fine. I didn't get a chance to see my respiratory consultant today, there are lots of different respiratory consultants so if I'm only in hospital for a short while, it's not uncommon for me to not see him. However, even if I don't see him, he ultimately decides my treatment. He agreed to me having an EpiPen, so I asked my respiratory nurse to ask him whether he'd changed his opinion on me having a home neb. I mean, giving me adrenaline to self administer when he won't even let me have a neb at home - just seems a little backwards to me, surely nebs come before adrenaline?!
Whilst waiting for my EpiPen to come from pharmacy, I started reflecting upon what happened. I realised that for the first time ever, I was actually concerned about going home. I live alone, in a little village. Depending on where my ambulance has to come from, it can take 10 mins or 40 mins for an ambulance to get to me. Then it takes 30 mins to get to hospital. I got so poorly and nearly died, and I was only across the road from the hospital and ambulance station.
The nurse came and gave me my EpiPen, I asked whether anyone had the chance to speak to my consultant about the home neb, and she went to find out. The simple answer was no. It was okay, I expected him to say no but I wanted to ask. Then I realised that I was going home with only an EpiPen to 'save' me if things go wrong when I'm home. I collected all my belongings to go home, when the lovely nurse came back to me and said she'd just read my admission notes, and that she hadn't realised how poorly I'd been just a few days ago. This was enough to make me burst into tears - I think I threw her a little as I'm very much normally calm, collected, in control Dawn. I then told her how concerned I was about going home, and I knew I was being stupid, but for some reason I just can't shake the fear that I'm going to die at home because I can't get help in time. She left me for a few minutes, then came back and told me the SHO would come and have a chat to me. I hadn't even met the SHO, from watching him with other patients, he seemed lovely but I had no intention of making myself feel/look even more pathetic than I felt in front of someone I've never met before. So I said I'd be fine once I got home and went. I walked off the ward holding back the tears, I got to my car and pretty much cried for the whole 40 minute drive home. I got home, unpacked my bag, had a shower, cuddled and fed Tommy baby, still crying. I don't know what is the matter with me. I know nothing has changed since this time last week, I'm not at any greater risk of dying than I have been previously. I've been that poorly before, actually I've been in worse states than that before, but for some reason, this admission has really affected me.
I feel let down by my respiratory team, which is completely unjustified as I didn't tell them how I was feeling. I didn't even see my consultant, and I didn't tell my respiratory nurse my concerns. I want to phone my respiratory nurse but for what? What can she say or do?? I have no one to talk to about things like this, I gave up trying to talk to my family when they used to say helpful things like 'we're all going to die one day'. Of course I have friends, but there is no way to explain that horrific feeling of not being able to breathe, feeling yourself getting worse, and knowing that death is a real possibility.
So that is that. I'm home, I keep bursting in tears and have this horrible feeling on uneasiness. I don't know what to do, who to turn to, whether I should even do anything or whether I just need to 'man up' and get on with it.
Last week my asthma was really playing up. Monday I went to work and wasn't too great, so no one was surprised when I phoned in sick on Tuesday, then Wednesday, and then Thursday. Thursday night I slept really well and woke up feeling great on Friday, so off to work I went. As the day went on I felt a little sicky, and gradually started to feel wheezy. I went and sat in a quiet room with my inhaler, quickly I realised that it would be a good idea to get across to A&E. As I'm sat there thinking who I should ask to drive me around to the other side of the hospital, I realised that actually I was deteriorating pretty quickly and I made the decision to ask someone to call an ambulance for me. Within the 10 minutes (at most, to me it felt like ages) it took for the ambulance to turn up, I had seriously deteriorated. They whipped me around to A&E, where on arrival, I had oxygen saturations of 44%. This was with oxygen, nebs, adrenaline and I was being bagged. I don't remember any of this, I remember my sats getting down to 62%, realising I was in trouble and deciding it was probably best if I stopped looking at the sats monitor.
Thankfully I picked up relatively quickly and didn't need to be intubated or go to ITU. I went to HDU, then moved to the respiratory ward, then home today.
The consultant I saw in A&E told me how lucky I was. The paramedics who took me to A&E came and saw me when they brought another patient in and told me that they couldn't believe that I was ok after what happened. The professor I saw numerous times in HDU kept telling me, and the junior drs he was teaching, that sats of 44% is as near fatal as you can get without actually being fatal. The respiratory consultant told me that I'd been very lucky, and 5 more minutes without medical help would have most likely led to a very different outcome. I heard all this, I understood what they were saying. I guess because it's not the first time this type of thing has happened, I didn't dwell on it too much.
It was decided I could only go home with an EpiPen, I briefly spoke to my respiratory nurse specialist about it this morning. It was fine, I was fine. I didn't get a chance to see my respiratory consultant today, there are lots of different respiratory consultants so if I'm only in hospital for a short while, it's not uncommon for me to not see him. However, even if I don't see him, he ultimately decides my treatment. He agreed to me having an EpiPen, so I asked my respiratory nurse to ask him whether he'd changed his opinion on me having a home neb. I mean, giving me adrenaline to self administer when he won't even let me have a neb at home - just seems a little backwards to me, surely nebs come before adrenaline?!
Whilst waiting for my EpiPen to come from pharmacy, I started reflecting upon what happened. I realised that for the first time ever, I was actually concerned about going home. I live alone, in a little village. Depending on where my ambulance has to come from, it can take 10 mins or 40 mins for an ambulance to get to me. Then it takes 30 mins to get to hospital. I got so poorly and nearly died, and I was only across the road from the hospital and ambulance station.
The nurse came and gave me my EpiPen, I asked whether anyone had the chance to speak to my consultant about the home neb, and she went to find out. The simple answer was no. It was okay, I expected him to say no but I wanted to ask. Then I realised that I was going home with only an EpiPen to 'save' me if things go wrong when I'm home. I collected all my belongings to go home, when the lovely nurse came back to me and said she'd just read my admission notes, and that she hadn't realised how poorly I'd been just a few days ago. This was enough to make me burst into tears - I think I threw her a little as I'm very much normally calm, collected, in control Dawn. I then told her how concerned I was about going home, and I knew I was being stupid, but for some reason I just can't shake the fear that I'm going to die at home because I can't get help in time. She left me for a few minutes, then came back and told me the SHO would come and have a chat to me. I hadn't even met the SHO, from watching him with other patients, he seemed lovely but I had no intention of making myself feel/look even more pathetic than I felt in front of someone I've never met before. So I said I'd be fine once I got home and went. I walked off the ward holding back the tears, I got to my car and pretty much cried for the whole 40 minute drive home. I got home, unpacked my bag, had a shower, cuddled and fed Tommy baby, still crying. I don't know what is the matter with me. I know nothing has changed since this time last week, I'm not at any greater risk of dying than I have been previously. I've been that poorly before, actually I've been in worse states than that before, but for some reason, this admission has really affected me.
I feel let down by my respiratory team, which is completely unjustified as I didn't tell them how I was feeling. I didn't even see my consultant, and I didn't tell my respiratory nurse my concerns. I want to phone my respiratory nurse but for what? What can she say or do?? I have no one to talk to about things like this, I gave up trying to talk to my family when they used to say helpful things like 'we're all going to die one day'. Of course I have friends, but there is no way to explain that horrific feeling of not being able to breathe, feeling yourself getting worse, and knowing that death is a real possibility.
So that is that. I'm home, I keep bursting in tears and have this horrible feeling on uneasiness. I don't know what to do, who to turn to, whether I should even do anything or whether I just need to 'man up' and get on with it.
Wednesday, 22 February 2012
Onwards and Upwards
I've got an appointment through to be seen at Heartlands :) I was expecting the waiting list to be much longer, my appointment is for the end of March. I'm trying to not get my hopes up, just going back to the basics and having a thorough review should be good, but I can't get the little hope of my 'miracle cure' being just around the corner. Ridiculous I know, but it's something that I've never been able to get out of my head; that I just need to find the right treatment and I can go back to being fine........
My Return to Nursing course looks set to happen in April! I've had to apply to a different university as the university I sat the numeracy test with are so disorganised and still haven't decided upon a start date, their communication has been awful. So, I've applied elsewhere and finally had meetings with my employers to sort out the placement side. It's still not finalised and I won't be entirely happy until I have everything in writing, but everything is looking good for an April start :) Today I got occupational health clearance from the hospital I work in, which I wasn't expecting to be a problem, but I've had so many problems with occupational health in the past that I was slightly worried. Another hurdle crossed :) :)
Saturday, 18 February 2012
Being a 'good' patient
Well, time flies! It's been a little while since I last updated - I'm such a bad blogger
It was my birthday this week, and I spent it in hospital :( Not how I planned to spend my birthday at all! I'm not hugely into birthdays anyway, and I don't make a big deal of celebrating my own birthday, but being in hospital just made it so much worse! My work friends were all so lovely though, and really went out of their way to make the day as good as it could be. They'd already planned things and had a collection (it was my 30th birthday), so with a few changes, we still had our celebrations. I was so touched by the effort that they put into the day, it would have been lovely if it had just been a normal work day and I wasn't in hospital, but the fact that they went to so much effort to cheer me up as I was in hospital - I really do know some wonderful people!!!
Now, the hospital admission. I had a cold last week, and as soon as I felt that I was getting over it, I picked up another one. I thought my lungs were going to manage but I gradually became increasingly wheezy and breathless. I took myself over to A&E expecting to be able to go home a few hours later, but ended up in resus and had the works - back to back nebs, IV magnesium and IV aminophylline. I honestly didn't feel too bad, but my sats weren't great, my heart was racing along and apparently my chest sounded awful so I was admitted.
The morning of my birthday, I was still on IV aminophylline. The usual procedure is that I have to be clear of all IV drugs for at least 24 hours, and still be okay, before discharge. So although I wanted to go home, I wasn't expecting it to happen. Then I saw Dr P walk on the ward! The respiratory ward has a relatively new system where there is a doctor on 'take' for a week at a time, so when you're admitted you see this doctor, and unless you already have an allocated consultant, he becomes your consultant. My consultant is Dr W, so I expected to be seen my Dr P, then my care be taken over by Dr W and his team. Dr P is really nice, I've met him before but I don't think he has much experience with brittle asthma and how to manage it. Previously, he has not listened to me when I've said that I thought it was too soon to take down the IV aminophylline and I have ended up in ITU. Anyway, he came along to review me. I blew him a lovely peak flow, he listened to my chest and remarked how clear it sounded, and said we could stop the IV aminophylline and I could go home that afternoon if I was okay. Whilst I was happy to hear that I could go home, I also knew it was too soon to stop the IV aminophylline. But because I want to be a good patient, I just smiled and said great. The afternoon came, I was coughing and wheezing a little and my pulse had shot back up. I was expecting to be reviewed by one of the junior doctors, and wasn't sure I'd be allowed home. Then the nurse looking after me came over with my discharge letter and said "right your discharge letter is done and you can go home....... you are feeling fine, aren't you?". I smiled, said I was fine and went home. I've struggled since being home, I was close to calling an ambulance on my first night home but my lungs settled down by 5am. I'm better than I was, but I know I was discharged too quickly.
I know that I should have said something, but I find it so hard to have a doctor say to me that I'm fine to go home, and for me to speak up and disagree! I know full well Dr W would not have let me go home so quickly, and whilst I would have whined about it, I know it would have been the right thing to do. Also, I think it would have felt more able to say to him that I thought it was too soon to take down the aminophylline. I'm angry with myself for not speaking up. But, I'm also not impressed with how I was discharged. The junior doctor who wrote my discharge letter didn't even come over to ask how I was or listen to my chest, literally nothing!! The nurse said "you are feeling fine, aren't you?", I didn't feel able, nor want to, then say oh well actually, no, I'm feeling wheezy and think it's too soon for discharge.
I know the problem here is my own problem. I should have felt able to speak up and say what I thought, I mean it is my health! But instead, I went away like a good little patient, to struggle alone at home. I'm not really sure what my point is here, but I'm not happy with myself and how I just did as I was told when I knew it wasn't the best thing for me.
Anyway, since being home I've slept lots. I am feeling better with each day, but I have an awful sounding, productive cough. I don't think it's infected, which is making me wonder whether this is more related to my bronchiectasis rather than asthma.
It was my birthday this week, and I spent it in hospital :( Not how I planned to spend my birthday at all! I'm not hugely into birthdays anyway, and I don't make a big deal of celebrating my own birthday, but being in hospital just made it so much worse! My work friends were all so lovely though, and really went out of their way to make the day as good as it could be. They'd already planned things and had a collection (it was my 30th birthday), so with a few changes, we still had our celebrations. I was so touched by the effort that they put into the day, it would have been lovely if it had just been a normal work day and I wasn't in hospital, but the fact that they went to so much effort to cheer me up as I was in hospital - I really do know some wonderful people!!!
Now, the hospital admission. I had a cold last week, and as soon as I felt that I was getting over it, I picked up another one. I thought my lungs were going to manage but I gradually became increasingly wheezy and breathless. I took myself over to A&E expecting to be able to go home a few hours later, but ended up in resus and had the works - back to back nebs, IV magnesium and IV aminophylline. I honestly didn't feel too bad, but my sats weren't great, my heart was racing along and apparently my chest sounded awful so I was admitted.
The morning of my birthday, I was still on IV aminophylline. The usual procedure is that I have to be clear of all IV drugs for at least 24 hours, and still be okay, before discharge. So although I wanted to go home, I wasn't expecting it to happen. Then I saw Dr P walk on the ward! The respiratory ward has a relatively new system where there is a doctor on 'take' for a week at a time, so when you're admitted you see this doctor, and unless you already have an allocated consultant, he becomes your consultant. My consultant is Dr W, so I expected to be seen my Dr P, then my care be taken over by Dr W and his team. Dr P is really nice, I've met him before but I don't think he has much experience with brittle asthma and how to manage it. Previously, he has not listened to me when I've said that I thought it was too soon to take down the IV aminophylline and I have ended up in ITU. Anyway, he came along to review me. I blew him a lovely peak flow, he listened to my chest and remarked how clear it sounded, and said we could stop the IV aminophylline and I could go home that afternoon if I was okay. Whilst I was happy to hear that I could go home, I also knew it was too soon to stop the IV aminophylline. But because I want to be a good patient, I just smiled and said great. The afternoon came, I was coughing and wheezing a little and my pulse had shot back up. I was expecting to be reviewed by one of the junior doctors, and wasn't sure I'd be allowed home. Then the nurse looking after me came over with my discharge letter and said "right your discharge letter is done and you can go home....... you are feeling fine, aren't you?". I smiled, said I was fine and went home. I've struggled since being home, I was close to calling an ambulance on my first night home but my lungs settled down by 5am. I'm better than I was, but I know I was discharged too quickly.
I know that I should have said something, but I find it so hard to have a doctor say to me that I'm fine to go home, and for me to speak up and disagree! I know full well Dr W would not have let me go home so quickly, and whilst I would have whined about it, I know it would have been the right thing to do. Also, I think it would have felt more able to say to him that I thought it was too soon to take down the aminophylline. I'm angry with myself for not speaking up. But, I'm also not impressed with how I was discharged. The junior doctor who wrote my discharge letter didn't even come over to ask how I was or listen to my chest, literally nothing!! The nurse said "you are feeling fine, aren't you?", I didn't feel able, nor want to, then say oh well actually, no, I'm feeling wheezy and think it's too soon for discharge.
I know the problem here is my own problem. I should have felt able to speak up and say what I thought, I mean it is my health! But instead, I went away like a good little patient, to struggle alone at home. I'm not really sure what my point is here, but I'm not happy with myself and how I just did as I was told when I knew it wasn't the best thing for me.
Anyway, since being home I've slept lots. I am feeling better with each day, but I have an awful sounding, productive cough. I don't think it's infected, which is making me wonder whether this is more related to my bronchiectasis rather than asthma.
Monday, 9 January 2012
Jumping hurdles
I've been putting off updating my blog for a little while now. My mood has been on the low side, to the point where I'm concerned my depression is back rather than this just being a blip. I don't want to whine about how sad and alone I feel.
I sat a numeracy test for my Return to Nursing course today. I revised all my nursing calculation info from my student days, only to get there and find it was just a basic adult numeracy test. It was very simple, and I now have a place on the course :) The only problem is that there aren't enough people to currently run the course. The uni want at least 15 people, and at the moment there are only 6. I don't know what is going to happen now, more waiting until either more people apply to join the course or until the uni agree to run the course with less people! Anyway, that is one more obstacle overcome. I'm on the course, now I just need a start date. The course was originally planned to start later this month.... I hate all this waiting!!!
I sat a numeracy test for my Return to Nursing course today. I revised all my nursing calculation info from my student days, only to get there and find it was just a basic adult numeracy test. It was very simple, and I now have a place on the course :) The only problem is that there aren't enough people to currently run the course. The uni want at least 15 people, and at the moment there are only 6. I don't know what is going to happen now, more waiting until either more people apply to join the course or until the uni agree to run the course with less people! Anyway, that is one more obstacle overcome. I'm on the course, now I just need a start date. The course was originally planned to start later this month.... I hate all this waiting!!!
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 :)
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!!!!!
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!!!!!
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