Last week I had my appointment I have been waiting for since March. It feels like a life time I have waited!! But it has come and gone. It went so quickly. Thankfully the Dr I saw was great and so far seems really proactive. He is going to get in touch with my old consultant from Southampton and get the test results I had done down there which hopefully they will be able to provide. There is a question about wether they will still have my records because it has been 6 years since I was down there. It will be really useful if they do have the test results still as when I redo the breathing tests as planned we can compare them and see what has changed.
The consultant was also really interested to find out about my history and how I got to where I was not only in my asthma but also in my normal life!!! It was refreshing for him to ask the questions and not judge and make assumptions like many consultants do. Infact one did that the other day when she had read my notes about steroid reduction and the reason we didnt reduce before was due to a few family deaths and some other stuff so because of this I stayed on a higher dose and as a result the Dr jumped to the conclusion that anything that bothers me I am not going to reduce my pred….little does she know me I will try at every conceivable point to reduce my pred and often against medical advice (I have learned now not to rush the process though and do go with what the medics say now!!).
I am going back at the beginning of October to do a Mannitol Challenge test and see the consultant again. I am a little bit nervous about the challenge test as I have to breathe in stuff to make my airways constrict but this will show how twitchy my airways are. The good thing is though he has recognised that my asthma is pretty unstable and in normal circumstances you would need to come off all meds to do the test however for me this is just not possible so I can stay on my meds. He also does not want me lower than 20mg of pred at all until he can get me stable…..I am not sure the last time I stayed on 20mg of pred for any length of time!!!
I do still have a huge list of questions that I want to ask and hopefully will get some answers to. Heres some of the stuff on my list:
1) can i switch to split inhalers? I found it easier taking Circlesonide and Atimos Modulite instead of Seretide.
2) What is causing all the pain in my chest and what can be done? The pain is bad. I take painkillers all the time and I never have in the past!!!
3) Exercise- I used to have no problem and now really can’t.
4) Work- what is going to happen they can’t go on forever supporting me as they do?
5) Who is my main consultant now?
6) What do I do when I have an attack? Why do they escalate so quickly?
7) Is sub cut an option?
There are numerous more but thats just for starters!!!
I go back in October so will see what the outcome is and hopefully he is still as proactive as he was in the last appointment.