Sunday, 15 April 2012

Work, lungs and meds = the story of my life!

This has been quite a big week for me. After almost 4 and a half years, I went back to work on a ward! I arrived feeling a little anxious that I'd feel out of place and not really sure what to do, it was so strange, I very quickly felt right at home and it was like I haven't been away for so long!! I suppose basic patient care doesn't change over the years, there is just even more paperwork to be done. So, week 1 of being a Health Care Assistant is done, another week to go, then I start my Return to Practice course. I'm starting to feel excited about it now :) :)

Like I said, over 4 years I've been fighting my case to be allowed to work on a ward again. It hasn't been easy, so this really meant a lot to me. I was really hurt by the lack of people who bothered to wish me luck/well wishes/ask how it went/whatever. My family, I don't expect anything like that from them, that's just the way things are. But friends........ I wonder if maybe I expect too much at times :( I don't know, I like to think if I had a friend in the position I was in last week, I'd have seen how big a deal this was for them, and wished them luck and asked how it went afterwards.

In other news, the Bambuterol and/or Ciclesonide was making a slight difference to my lungs!! My morning peak flows were slightly improved, and my night time symptoms were slightly less. Unfortunately, I started to suffer really bad headaches which not a single painkiller I own would touch, and real difficulty in sleeping. I hoped that these side effects would wear off by the time I started my new job but they didn't :( Starting a new job with a banging headache, and only about 3 hours of broken sleep a night was not ideal! I tried to phone the respiratory nurses at the SBAU but I forgot it was clinic day which would explain me not being able to contact them. Instead I contacted my own respiratory nurse at my local hospital, she doesn't have any patients on these drugs so wasn't able to offer me much help but she confirmed what I thought (and basically that was all I wanted, someone to agree with my thoughts on what was best to do next). I stopped both meds, I'm pretty sure the Bambuterol was the cause of the side effects and not the Ciclesonide, but I want to start both again. Today is the first day I haven't had a headache, so I'm going to give myself a few days then slowly restart the meds. I plan to start with the Ciclesonide then after a few days, I'm going to reintroduce the Bambuterol. I was on 10mg, and was supposed to increase to 20mg. As I noticed a slight improvement on 10mg, I really do want to give this a proper go and get the dose up to 20mg. So I'm going to start again with 5mg, and hopefully the side effects will lessen and I can get my body used to the drug and slowly increase the dose. I'm going to be so disappointed if this is another drug that helps me but I can't tolerate, but I'm not prepared to accept defeat where this drug is concerned just yet! :)

Unfortunately, my fears that my lungs would react badly to returning to work on the wards, have proven to be right. I'm hoping that this is just a little blip, to go from an comfortable little office job sitting down all day to a job which is demanding and I'm on my feet all day, I suppose it's only to be expected. Also, I've had a constant headache and not as much sleep as I'd like, and tiredness always makes my lungs grumpy. I really, really hope that this is a temporary blip which will settle down. I guess I always knew there was a real chance I wouldn't be able to do this, but I'm going to be absolutely devastated if this return to ward work doesn't work out. 

Anyway, does this read as a negative update? It's really not meant to be!! Overall, this has been a great week, and I'm hopeful that the little blips I've had with grumpy lungs and the new meds will be easily overcome :)

Tuesday, 3 April 2012


I've had a really busy couple of weeks. Today I was able to wake up in my lovely bed, look at the clock, and go back to sleep. I love my bed! :)

Last week was my assessment at the Severe and Brittle Asthma Unit in Birmingham. I travelled up the day before and met up with my Grandparents and one of my cousins. My family moved from Birmingham to Devon 15 years ago, I last saw my Grandparents a few months after we moved down, and I have no idea the last time I saw my cousins - probably closer to 20 years ago!! I was a little nervous as it's been so long since I last saw them, but it was completely unnecessary. It was so lovely to see them, and I'm definitely going to make an effort to stay in touch with them.

So, the appointment. First of all, I woke up feeling pretty bad. I got the bus to Heartlands, it took me about 30 mins to get to the main entrance from the bus stop as I had to keep stopping to breathe. It only took 5 mins to get from the main entrance to the bus stop when I left, so I wasn't doing too well first thing! My first appointment was with the respiratory nurse specialist. At this point I had oxygen saturations of 90% - on one hand I was pleased that my lungs were playing up as I was so worried that I was going to turn up, my lungs would behave beautifully and they'd think there was nothing wrong with me. On the other hand, struggling to breathe when you're in an unfamiliar place and need to get somewhere for a certain time is no fun!! I had allergy skin prick testing, which threw up some surprising results - that's for a separate blog post.

Then came chest x-ray, blood tests and lung function tests. Unfortunately, no one told me which medications I had to stop prior to the lung function tests, so I need to go back and do those again. I've got a letter informing me of an appointment and a detailed list of what meds should be stopped - I assume they forgot to send me that list first time around, maybe I should have known or asked, but I didn't think about it.

Finally, I had my appointment in the clinic. I didn't see Dr Mansur, but one of his team instead. Talk about it being a small world; the Specialist Registrar I saw recognised me and I recognised her, we talked about where we've previously worked and it turns out that we met each other years ago when I worked in Taunton hospital! The appt was good, and it is so reassuring to know that there are further treatments out there for me to try :) I've increased my Omeprazole to twice daily in case reflux is creating a problem. I've been on the increased dose for a week now and it hasn't made any difference, I didn't think it would but it didn't hurt to try. I've been prescribed Bambuterol tablets and a Ciclesonide inhaler. I've got an appt with my GP tomorrow to get these prescribed, I hope there is a chemist which stocks these meds in the small town I live near as I'd like to get going with them!

We also discussed VCD, I've got to have a nasal endoscopy to rule this out. I had a nasal scope years ago in the middle of an asthma attack which was negative, and I don't have any symptoms of VCD, so I'm not expecting the scope to pick anything up but I'm happy to have it to rule this out.

Dysfunctional breathing came up, I think that the physio thought it was more of a problem for me than it actually is. I was quite anxious during the whole day, I was very tired and the physio kept putting her hands on my stomach and chest whilst talking about the correct way to breathe. I can't stand being touched by someone I don't know, so I was really tense and nervous. I know at times I do have an element of dysfunctional breathing, but I also know that it doesn't cause my asthma. At the same time, I accept dysfunctional breathing isn't going to help my asthma!! I'm just a little worried that they're going to think dysfunctional breathing plays a bigger part in my asthma than it actually does, as I have absolutely no problem in breathing 'correctly' when comfortable, but when the physio had her hands on me, I was completely unable to do it! I guess I should have said how uncomfortable I was, which would have explained how tense I was.......

Anyway, it was good, definitely worth the effort of getting there. My next appointment is July, which gives me time to trial these new medications. If they don't work, the next things we'll be discussing are sub cut terbutaline and bronchothermoplasty. I did bring up the topic of home nebulisers. As the SpR I saw had previously worked in the South West, she commented that she had noticed that consultants down in this part of the country seem much more reluctant to let people have a home neb....... therefore, she doesn't really want to go against something that my consultant is clearly against. However, she said we can discuss it at my next appointment if the Bambuterol tablets don't help. Which is fine with me, if we can find some meds which help, I won't need a home neb :)