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!
Wednesday, 20 April 2011
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 :)
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
Rant!!
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.
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
Mojitos!
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 :)
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!
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!
Wednesday, 29 December 2010
Disappointment
This morning I received a letter from my respiratory consultant saying that there has been no significant improvements whilst on the trial of Omalizumab, therefore there is no point continuing with it. I'm surprised at how disappointed I felt reading that letter. I mean, I was expecting this to be the outcome as the improvements have been very small and maybe not even there, maybe I was just seeing improvements because I so desperately wanted them. I was really suffering with side effects, mainly joint pain, and I had suspected that the side effects were outweighing any benefits.
I still clung onto that tiny bit of hope that this would be my 'miracle cure', I knew deep down that it wasn't but until someone else told me otherwise then that thought remained. Now, someone else has told me.
I'm due to see my consultant in a few weeks so I guess we'll discuss it properly then.
Christmas is my favourite time of year, but this year I can't shake a sadness. I've noticed my old depressive thought patterns re-emerging. I don't know.... I hope I'm just thinking too much. I can't find the words to write anymore on that, meh.
I hope everyone has had a lovely Christmas, and I wish you all a happy, healthy and peaceful 2011 :)
I still clung onto that tiny bit of hope that this would be my 'miracle cure', I knew deep down that it wasn't but until someone else told me otherwise then that thought remained. Now, someone else has told me.
I'm due to see my consultant in a few weeks so I guess we'll discuss it properly then.
Christmas is my favourite time of year, but this year I can't shake a sadness. I've noticed my old depressive thought patterns re-emerging. I don't know.... I hope I'm just thinking too much. I can't find the words to write anymore on that, meh.
I hope everyone has had a lovely Christmas, and I wish you all a happy, healthy and peaceful 2011 :)
Saturday, 11 December 2010
Mixed feelings
Christmas is my favourite time of year :D This week I've been to a few christmas markets around the country, the atmosphere at these places has been amazing. I'm off to London next week, I can't wait to visit the Winter Wonderland and Harrods Christmas department, and no doubt relieve my bank account of some pennies!!
I've really been suffering with joint pain recently, caused by the Omalizumab injections. The knee pain has gotten so bad that when I kneel down, I need to hold on to something to help me stand up. Also, the longer I walk around, the stiffer and more painful my knees and lower back get :( There are other side effects too (mouth ulcers, finger and toe joint pain, headaches, indigestion) but I can ignore those as they seem to ease off, the knee and back pain is persistant and seems to be getting worse.
I had an injection a few days ago where I mentioned this to my respiratory nurse. She thinks that the side effects are outweighing the very small improvement in my asthma, and wants to talk to my consultant before I'm due my next dose. I'm due to see my consultant in the new year anyway, a few months back he told me that he'd taken some of his patients off Omalizumab as their side effects weren't worth the negligable improvement in their asthma, sooooo it looks like Omalizumab isn't going to be my miracle cure :(
On one hand I don't really want to take a medication that is causing me so much pain without any noticable improvement in my lungs, on the other hand I had high hopes that this medication would help me - help both my asthma and my fight to return to nursing, so this is all rather disheartening.
I've really been suffering with joint pain recently, caused by the Omalizumab injections. The knee pain has gotten so bad that when I kneel down, I need to hold on to something to help me stand up. Also, the longer I walk around, the stiffer and more painful my knees and lower back get :( There are other side effects too (mouth ulcers, finger and toe joint pain, headaches, indigestion) but I can ignore those as they seem to ease off, the knee and back pain is persistant and seems to be getting worse.
I had an injection a few days ago where I mentioned this to my respiratory nurse. She thinks that the side effects are outweighing the very small improvement in my asthma, and wants to talk to my consultant before I'm due my next dose. I'm due to see my consultant in the new year anyway, a few months back he told me that he'd taken some of his patients off Omalizumab as their side effects weren't worth the negligable improvement in their asthma, sooooo it looks like Omalizumab isn't going to be my miracle cure :(
On one hand I don't really want to take a medication that is causing me so much pain without any noticable improvement in my lungs, on the other hand I had high hopes that this medication would help me - help both my asthma and my fight to return to nursing, so this is all rather disheartening.
Subscribe to:
Posts (Atom)