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 :)