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 :) :)

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. 

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!!!

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 :)

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!!!!!

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 :)

..... 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 :)