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!!!!!
Monday, 28 November 2011
Sunday, 23 October 2011
Time flies!!
Wow, I am a bad blogger! So much time has gone by since my last post, and life has been ticking along in its usual manner.
Since my last post, I've had a further 2 chest infections and my diagnosis of "mild bronchiectasis" is now official :( I'm on a course of Doxycycline for a chest infection right now, and when this course finishes I'll continue to take it as a prophylactic measure...... fingers crossed that it works as the past 2 months have been pretty miserable. I feel constantly ill, my peak flows are all over the place, my oxygen saturations are crap. Sometimes I feel breathless and wheezy at rest, and other times I'm okay as long as I don't too much. I've been off work sick more than I've actually been at work over the past few months, I spent the last week in and out of hospital. I was so desperate to avoid staying in hospital on Friday that I resorted to using a stupid amount of Symbicort (until I was shaking badly and felt very sick) and nudging up the marker on the peak flow meter so I could prove how much I had improved to be discharged. I know I know, I am an idiot but if I'd had any concerns that I was going to deteriorate or actually needed to stay in hospital, I would have stayed put and behaved myself. I've got my reasons for desperately trying to keep myself out of hospital for the next few weeks, which I'll talk about at a later point. Just for the record, if I do need to be in hospital, then of course I will get myself help and allow myself to be admitted!
Right, now I have got that little whiny rant out of my system!! :)
Over the past 4 years I've lost weight, gained weight, lost weight, gained weight...... it's got to the point where I am disgusted with myself and my eating habits so I've decided to do something about it (in a healthy way as my previous weight losses were all achieved unhealthily). For ages I blamed it on the steroids, and whilst they probably have played in a part in my weight gain, I know that the main problem has been my laziness when it comes to food - I'd rather eat chocolate, crisps and cakes rather than cook a meal, and that even includes putting a ready meal into the microwave!! Pure laziness!!!!!! I've just done a week on WeightWatchers, and I lost 5lb :) :) I know the initial weight loss is water loss too so I'm not expecting that every week, but I am pretty happy with that! It's nice to feel proud about something :) Before I got this spell of chest infections, I got into playing Zumba on my Wii, it's so much fun!! Hopefully, my lungs will calm down soon so I can incorporate a little exercise into my WeightWatchers plan and maybe help the lb shedding along a little :)
Since my last post, I've had a further 2 chest infections and my diagnosis of "mild bronchiectasis" is now official :( I'm on a course of Doxycycline for a chest infection right now, and when this course finishes I'll continue to take it as a prophylactic measure...... fingers crossed that it works as the past 2 months have been pretty miserable. I feel constantly ill, my peak flows are all over the place, my oxygen saturations are crap. Sometimes I feel breathless and wheezy at rest, and other times I'm okay as long as I don't too much. I've been off work sick more than I've actually been at work over the past few months, I spent the last week in and out of hospital. I was so desperate to avoid staying in hospital on Friday that I resorted to using a stupid amount of Symbicort (until I was shaking badly and felt very sick) and nudging up the marker on the peak flow meter so I could prove how much I had improved to be discharged. I know I know, I am an idiot but if I'd had any concerns that I was going to deteriorate or actually needed to stay in hospital, I would have stayed put and behaved myself. I've got my reasons for desperately trying to keep myself out of hospital for the next few weeks, which I'll talk about at a later point. Just for the record, if I do need to be in hospital, then of course I will get myself help and allow myself to be admitted!
Right, now I have got that little whiny rant out of my system!! :)
Over the past 4 years I've lost weight, gained weight, lost weight, gained weight...... it's got to the point where I am disgusted with myself and my eating habits so I've decided to do something about it (in a healthy way as my previous weight losses were all achieved unhealthily). For ages I blamed it on the steroids, and whilst they probably have played in a part in my weight gain, I know that the main problem has been my laziness when it comes to food - I'd rather eat chocolate, crisps and cakes rather than cook a meal, and that even includes putting a ready meal into the microwave!! Pure laziness!!!!!! I've just done a week on WeightWatchers, and I lost 5lb :) :) I know the initial weight loss is water loss too so I'm not expecting that every week, but I am pretty happy with that! It's nice to feel proud about something :) Before I got this spell of chest infections, I got into playing Zumba on my Wii, it's so much fun!! Hopefully, my lungs will calm down soon so I can incorporate a little exercise into my WeightWatchers plan and maybe help the lb shedding along a little :)
Saturday, 3 September 2011
..... and breathe........
I finally made it home on Wednesday - yay!
On Tuesday I had a chat with my consultant, it turns out that they'd grown Staph Aureus from my sputum culture. I was not expecting this at all, but it explains why my lungs have acted in a completely different way during this admission. I'm still a little confused though - I didn't feel that I had a chest infection, my sputum definitely didn't look infected, there was nothing of note on my chest x-ray, and I was only spiking low grade pyrexias. A few months back, there were discussions about me potentially having Bronchiectasis. After the CT scan it was decided that the thickening in my lungs wasn't severe enough to diagnose me with Bronchiectasis, however, after this most recent admission, my consultant thinks it's something we might need to look at again.
I've had a course of antibiotics and whacked up to Pred back up to 60mg whilst in hospital, and eventually my lungs started to behave. My consultant hopes that this episode of staph aureus will be a one off so he is reluctant to do anything just yet, I've already had a trial of Azithromycin which didn't appear to have any benefits (but I do seem to have had 2 episodes of chest infections since stopping this trial, and I very rarely get (got?) chest infections so maybe it was making a difference which I can only see now??). So the 'plan' is to wait and see what happens! I seem to do a lot of that!!
Since being home I'm caught in that horrible place of desperately wanting to reduce my Pred as I'm finding the side effects hard to deal with, but at the same time, knowing that I need the Pred to keep these lungs working :(
Anyway, I'm very glad to be home! There is nothing like sleeping in my own bed and having lots of Tommy cuddles and kisses :)
On Tuesday I had a chat with my consultant, it turns out that they'd grown Staph Aureus from my sputum culture. I was not expecting this at all, but it explains why my lungs have acted in a completely different way during this admission. I'm still a little confused though - I didn't feel that I had a chest infection, my sputum definitely didn't look infected, there was nothing of note on my chest x-ray, and I was only spiking low grade pyrexias. A few months back, there were discussions about me potentially having Bronchiectasis. After the CT scan it was decided that the thickening in my lungs wasn't severe enough to diagnose me with Bronchiectasis, however, after this most recent admission, my consultant thinks it's something we might need to look at again.
I've had a course of antibiotics and whacked up to Pred back up to 60mg whilst in hospital, and eventually my lungs started to behave. My consultant hopes that this episode of staph aureus will be a one off so he is reluctant to do anything just yet, I've already had a trial of Azithromycin which didn't appear to have any benefits (but I do seem to have had 2 episodes of chest infections since stopping this trial, and I very rarely get (got?) chest infections so maybe it was making a difference which I can only see now??). So the 'plan' is to wait and see what happens! I seem to do a lot of that!!
Since being home I'm caught in that horrible place of desperately wanting to reduce my Pred as I'm finding the side effects hard to deal with, but at the same time, knowing that I need the Pred to keep these lungs working :(
Anyway, I'm very glad to be home! There is nothing like sleeping in my own bed and having lots of Tommy cuddles and kisses :)
Monday, 29 August 2011
Fear
Well, this post is probably going to be a bit of a jumbled mess to read. I haven't posted for a little while as I haven't had anything worth writing about, but now.... well the point of this blog was a place to vent about these lungs of mine......
A couple of weeks ago I had a cold, I felt a little crappy and had a day off work - mainly due to lack of sleep through coughing and wheezing all night rather than feeling unable to work.
I returned to work and all was well for a few days until one afternoon I felt breathless, wheezy and my inhalers were completely useless. I wandered over to see my respiratory nurse who gave me a neb and sent me to A&E. The Dr who assessed me in A&E used to work on the respiratory ward so knew my history, she refused to discharge me even though I soon picked up and sent me to the Acute Medical Unit for observation. I convinced them I was fine, (I really thought I was!), the Dr went away to write my discharge letter, by the time she came back I was in the middle of a severe asthma attack. I hate it when they come on so quickly and severely like that.
So here was night one; oxygen, back to back nebs, IV magnesium and aminophylline, blood gases, reviews by ICU Drs. By the next morning I had settled down and was transferred to the respiratory ward.
I can't really remember the sequence of what has happened since. IVs, nebs and oxygen have all been weaned down and stopped in preparation of discharge, only each time for me to deteriorate and have to start them all up again.
Yesterday, day 9 of this admission, I finally felt good! I went for a little walk, peak flows picked up, I thought I'd be able to go home today. At about midnight I started to feel wheezy and started coughing, a couple of nebs later and it was time to get the Drs involved. Numerous, painful attempts to get cannulaes in and to obtain blood gases, and reviews by 4 different Drs later, it was decided I needed to be transferred to ICU. I've been transferred to ICU many times, this time was horrendous :( Each time I've been previously, I've either been so poorly that I don't remember it or not that bad so its more for observation and intensive treatment.
This time I get there and the Drs were swinging between intubating and waiting to see what happened as my most recent ABG was looking more positive. Hearing and watching them prep the intubation trolley, having all the staff come piling into the room to assist - I was so scared. The decision was to watch and wait, which turned out to be the right decision. I'm now back on the respiratory ward feeling much better than last night!
My lungs have never done this before. Its 'normal' for me to come in, pick up, deteriorate, slowly pick up, maybe have a few tiny blips and get discharged home. I've never had so many cycles of getting off all medication in preparation of going home, only to have a major setback and starting all over again.
I'm very concerned that the pattern of my asthma has changed to something even harder to control. I've had a pretty good year in controlling my asthma and keeping out of hospital, this admission feels like I'm right back to square one. I know I'm most likely being over dramatic and all doom and gloom. I think I need to see my respiratory nurse and consultant tomorrow to discuss what has happened, and get home to allow myself time to rest and take in everything that has happened. Deep down, even though my asthma is unpredictable, I do feel that I have at least a little understanding of what is going on (whether I genuinely do have that understanding or just think I do is another matter!), and right now I have no idea what is happening, what will happen, what has happened.... and in all honesty, I find that pretty damn scary.
A couple of weeks ago I had a cold, I felt a little crappy and had a day off work - mainly due to lack of sleep through coughing and wheezing all night rather than feeling unable to work.
I returned to work and all was well for a few days until one afternoon I felt breathless, wheezy and my inhalers were completely useless. I wandered over to see my respiratory nurse who gave me a neb and sent me to A&E. The Dr who assessed me in A&E used to work on the respiratory ward so knew my history, she refused to discharge me even though I soon picked up and sent me to the Acute Medical Unit for observation. I convinced them I was fine, (I really thought I was!), the Dr went away to write my discharge letter, by the time she came back I was in the middle of a severe asthma attack. I hate it when they come on so quickly and severely like that.
So here was night one; oxygen, back to back nebs, IV magnesium and aminophylline, blood gases, reviews by ICU Drs. By the next morning I had settled down and was transferred to the respiratory ward.
I can't really remember the sequence of what has happened since. IVs, nebs and oxygen have all been weaned down and stopped in preparation of discharge, only each time for me to deteriorate and have to start them all up again.
Yesterday, day 9 of this admission, I finally felt good! I went for a little walk, peak flows picked up, I thought I'd be able to go home today. At about midnight I started to feel wheezy and started coughing, a couple of nebs later and it was time to get the Drs involved. Numerous, painful attempts to get cannulaes in and to obtain blood gases, and reviews by 4 different Drs later, it was decided I needed to be transferred to ICU. I've been transferred to ICU many times, this time was horrendous :( Each time I've been previously, I've either been so poorly that I don't remember it or not that bad so its more for observation and intensive treatment.
This time I get there and the Drs were swinging between intubating and waiting to see what happened as my most recent ABG was looking more positive. Hearing and watching them prep the intubation trolley, having all the staff come piling into the room to assist - I was so scared. The decision was to watch and wait, which turned out to be the right decision. I'm now back on the respiratory ward feeling much better than last night!
My lungs have never done this before. Its 'normal' for me to come in, pick up, deteriorate, slowly pick up, maybe have a few tiny blips and get discharged home. I've never had so many cycles of getting off all medication in preparation of going home, only to have a major setback and starting all over again.
I'm very concerned that the pattern of my asthma has changed to something even harder to control. I've had a pretty good year in controlling my asthma and keeping out of hospital, this admission feels like I'm right back to square one. I know I'm most likely being over dramatic and all doom and gloom. I think I need to see my respiratory nurse and consultant tomorrow to discuss what has happened, and get home to allow myself time to rest and take in everything that has happened. Deep down, even though my asthma is unpredictable, I do feel that I have at least a little understanding of what is going on (whether I genuinely do have that understanding or just think I do is another matter!), and right now I have no idea what is happening, what will happen, what has happened.... and in all honesty, I find that pretty damn scary.
Sunday, 24 July 2011
Christmas????
Following on from my last post, I'm VERY pleased to be able to report that lovely Kirstie got her new lungs :) She is recovering well, she is one amazing girlie.
My last post about myself was pretty miserable, so lets move onwards and upwards!
I've had lots of work related stress over the past few weeks. I was told that my return to work was only a temporary 2 month agreement due to funding issues, then I had to find another position elsewhere in the hospital. This came as quite a shock to me! My union rep was on holiday, the human resources manager was never in the office when I tried to phone and took it upon himself to (very professionally) ignore my emails. There is a real shortage of jobs in the hospital at the moment so chances of finding a suitable position for me to transfer to were not looking good at all.
It appears that me returning to work and not holding any grudges about everything that happened has reflected really well on me. Also, I've gone back and made the role my own, I keep being told what a good job I'm doing and thanked for all my hard work - the funny thing is that I could work harder if I pushed myself, I guess they have low expectations considering the person who was in the post before me! Anyway, all this meant that I had a few key people in the department fighting very hard to keep me. Last week the manager decided that this talk of me leaving the department next week was all a big misunderstanding, and that he hadn't meant that at all! Now, he told me in the corridor and sent me a 2 line email telling me that I needed to look for another position, so I know full well it wasn't just a misunderstanding. It seems like he has either changed his mind, or realised he made a mistake, and rather than just say that, he is backtracking. I don't care either way, I've settled in really nicely so I'm glad to be staying. I'm extremely glad to not have the stress of being back on the redeployment register too :)
The lovely people I work with had arranged a little leaving party for me and bought me presents! As they'd already bought the presents they still gave them to me, chocolates which I shared with everyone, and a lovely bracelet. I felt so bad taking them as I wasn't leaving, but at the same time, most of these people I've only known for less than 2 months so I was really touched that they'd done that for me. I do work with some lovely people :)
Oh and that reminds me, remember in one of my previous posts I was talking about how I didn't want to return to work and be the 'social butterfly'?! Well, I only found myself organising the Christmas party!! I just can't help myself, I love doing things like that! So, I've decided to go with Becky's wise words that I'd be betraying myself by stopping myself from doing the things that make me happy, rather than betraying myself by going back and pretending nothing happened. My thoughts are that we spend so much of our lives at work, it's too much time to not be happy or not get on with your colleagues.
In other work related happy news, Monday is 25th July. I've found someone else in the office who is also a Christmas fanatic, so we're going to celebrate Christmas in July!! I'm baking some mince pies, she is going to bake a christmas cake, and I'm going to dig out the tinsel I left behind and throw it around. I must admit, most other people looked rather horrified at the idea, but I'm sure that we'll force them to enjoy themselves for at least a few minutes ;) On that note, there are only 154 days until Christmas!
My last post about myself was pretty miserable, so lets move onwards and upwards!
I've had lots of work related stress over the past few weeks. I was told that my return to work was only a temporary 2 month agreement due to funding issues, then I had to find another position elsewhere in the hospital. This came as quite a shock to me! My union rep was on holiday, the human resources manager was never in the office when I tried to phone and took it upon himself to (very professionally) ignore my emails. There is a real shortage of jobs in the hospital at the moment so chances of finding a suitable position for me to transfer to were not looking good at all.
It appears that me returning to work and not holding any grudges about everything that happened has reflected really well on me. Also, I've gone back and made the role my own, I keep being told what a good job I'm doing and thanked for all my hard work - the funny thing is that I could work harder if I pushed myself, I guess they have low expectations considering the person who was in the post before me! Anyway, all this meant that I had a few key people in the department fighting very hard to keep me. Last week the manager decided that this talk of me leaving the department next week was all a big misunderstanding, and that he hadn't meant that at all! Now, he told me in the corridor and sent me a 2 line email telling me that I needed to look for another position, so I know full well it wasn't just a misunderstanding. It seems like he has either changed his mind, or realised he made a mistake, and rather than just say that, he is backtracking. I don't care either way, I've settled in really nicely so I'm glad to be staying. I'm extremely glad to not have the stress of being back on the redeployment register too :)
The lovely people I work with had arranged a little leaving party for me and bought me presents! As they'd already bought the presents they still gave them to me, chocolates which I shared with everyone, and a lovely bracelet. I felt so bad taking them as I wasn't leaving, but at the same time, most of these people I've only known for less than 2 months so I was really touched that they'd done that for me. I do work with some lovely people :)
Oh and that reminds me, remember in one of my previous posts I was talking about how I didn't want to return to work and be the 'social butterfly'?! Well, I only found myself organising the Christmas party!! I just can't help myself, I love doing things like that! So, I've decided to go with Becky's wise words that I'd be betraying myself by stopping myself from doing the things that make me happy, rather than betraying myself by going back and pretending nothing happened. My thoughts are that we spend so much of our lives at work, it's too much time to not be happy or not get on with your colleagues.
In other work related happy news, Monday is 25th July. I've found someone else in the office who is also a Christmas fanatic, so we're going to celebrate Christmas in July!! I'm baking some mince pies, she is going to bake a christmas cake, and I'm going to dig out the tinsel I left behind and throw it around. I must admit, most other people looked rather horrified at the idea, but I'm sure that we'll force them to enjoy themselves for at least a few minutes ;) On that note, there are only 154 days until Christmas!
Thursday, 7 July 2011
Do something amazing!
My lovely friend, Kirstie Tancock, is very poorly in Harefield Hospital. You can read her blog here. She has cystic fibrosis, and is in desperate need of a lung transplant. Please could people keep her in their thoughts and/or prayers. She is so poorly that this is her last chance to get some new lungs before she gets too ill for transplant. Thank you x
I've been registered as an organ donor for as long as I can remember. I know my lungs won't be much good, and I suppose my heart isn't in the best condition, but other parts of my body could possibly help someone! I completely respect that people have their own thoughts and feelings, but I don't understand why more people aren't registered as organ donors. Would you take an organ transplant if you were in need of one? Well, why aren't you willing to do the same for someone else?!
If there is anyone who read this, who isn't a registered organ donor, please give it some thought. This website is a great place to find out more, and you can register here too.
Finally, please watch this video by Tor. Tor has Cystic Fibrosis and has been on the waiting list for new lungs for 4 years now.
http://www.transplantweek.co.uk/tor-tremlett.html
Three people die each day because there are not enough organ donors
50% of people waiting for a transplant die whilst on the waiting list
1 person can save 9 lives
Sunday, 3 July 2011
Scary medications
I've been lying low and keeping quiet lately, 'things' aren't going so well and posting the ins and outs of my life online doesn't really appeal to me! So, concentrating on these lungs of mine;
I had a review with my respiratory consultant, we agreed that Azithromycin wasn't doing anything for me so that was stopped. He brought up Methotrexate. When I hear that drug I automatically think 'cancer', which leads to 'horrible side effects', so I said I was pretty reluctant to take drugs like that. Since the appt I've read up on Methotrexate and seen that it's actually used in a few other conditions too, and some people with severe/brittle asthma have found it very helpful. Food for thought.... I'd love to hear any experiences from anyone who has taken it!
I mentioned in my last post that I'd been feeling pretty unwell. This week it got worse, I rarely get chest infections but I really felt like I had one. So I made an appt to see my GP that afternoon, by the time of the appt I felt better. I HATE it when that happens!! Obviously I like feeling better, but it's so annoying when I end up saying - I feel okay now but earlier I felt really ill and was coughing up gunk blah blah blah. Anyway, if it had been my old GP I would have cancelled the appt but my new GP is so lovely. He has A&E experience so he understands asthma that can quickly deteriorate, for me this is great! Outcome was, I have a course of antibiotics to take and had to bump up the Pred again :( I felt so much better after a few days and my peak flows have started to pick up again, so it's all good :)
I had a review with my respiratory consultant, we agreed that Azithromycin wasn't doing anything for me so that was stopped. He brought up Methotrexate. When I hear that drug I automatically think 'cancer', which leads to 'horrible side effects', so I said I was pretty reluctant to take drugs like that. Since the appt I've read up on Methotrexate and seen that it's actually used in a few other conditions too, and some people with severe/brittle asthma have found it very helpful. Food for thought.... I'd love to hear any experiences from anyone who has taken it!
I mentioned in my last post that I'd been feeling pretty unwell. This week it got worse, I rarely get chest infections but I really felt like I had one. So I made an appt to see my GP that afternoon, by the time of the appt I felt better. I HATE it when that happens!! Obviously I like feeling better, but it's so annoying when I end up saying - I feel okay now but earlier I felt really ill and was coughing up gunk blah blah blah. Anyway, if it had been my old GP I would have cancelled the appt but my new GP is so lovely. He has A&E experience so he understands asthma that can quickly deteriorate, for me this is great! Outcome was, I have a course of antibiotics to take and had to bump up the Pred again :( I felt so much better after a few days and my peak flows have started to pick up again, so it's all good :)
Subscribe to:
Posts (Atom)