I meet with the pulmonologist tomorrow afternoon - it is a very short meeting (15 minutes) so I assume all that will happen is some history, some preliminary feedback, and some referrals for tests. I'm guessing also moving forward that my GP will be able to use him as a resource now that he will have looked at my file.
Any suggestions for getting the most out of this very short meeting? I usually like to go into doctor's meetings with some bullet points.
My own goals re asthma long term are something like this in order:
1) taper oral steroids
2) end this exacerbation - started in October, 2012 and is still ongoing
3) figure out why it happened in the first place
4) prevent it in the future
5) final goal: figure out/rule out if asthma is the underlying reason for my having low energy level even when I think I'm not symptomatic - I and doctor are suspicious asthma is, though for different reasons.
Obviously this is more than can be accomplished in such a short meeting, but in terms of prioritizing the time, it did seem important to me to list them out.
I am happy of course not to have sudden flares from ordinary daily activities. The current dose of pred has accomplished that. However, I am very unhappy at the amount of pred its taken to get some stability and keep symptoms relatively minor.
Re: prevent future exacerbations
Aside from the huge cost of four months being mostly too sick to work and sometimes even to do my share of household responsibilities, I have a long (20 year) history of colds leading to long term exacerbations and the over all pattern has never been looked at or considered.
Looking at the trend over the years it has taken more and more to get them reigned in. There have been lulls - for the three-four years previous it seemed flixonase and medium dose symbicort squashed them, but it is also possible that I just lucked out with the weather. I tend to have more problems in winters with cold windy wet weather. The overall trend worries me: if this is me at 48 where will I be at 68?
Re: low energy level.
It would be really nice to have the stamina to work at something 9-5 and then come home and do my share of household responsibilities and have energy for social activities or personal projects. That level of activity on a regular basis hasn't been an option for years. Even a half day out tires me and can put me in ""gotta sit"" or ""gotta zone out"" mode.
Fatigue is a very vague symptom: asthma can be a cause if one is working too hard at breathing and it can even be a silent cause if one has accommodated to a given level of excess effort in breathing as just normal. Then again, it isn't specific to asthma in the least.
My GP is suspicious because he finds it hard to believe I could have such a difficult exacerbation without some level of unattended symptoms previous to the cold that triggered this mess. I am not fully convinced by his logic - my own theory is that since my late 20's if we don't get an exacerbation early it can grow into a monster that responds slowly to steroids and eventually only ends when it burns itself out of its own accord.
I have different reasons for being suspicious. After the first major flare+urgent care visit during this exacerbation, I did a review of what should have/could have been a sign that I was heading towards trouble. That was my first ever visit to urgent care as an in-the-minute emergency for asthma and I was reading it as a ""doing something wrong here, need to review"" sign.
The more I looked over the experience and what lead up to it, I noticed the following (a) that the warning signs were familiar - feeling kind of wonky and needing to divert some small energy/attention to breathing because breathing itself had become a form of exercise (b) that my way of coping with that warning sign is impeding my life and diminishing my ability to take on activities outside of the house.
I realized that I have a life long history of coping with breathing problems by stopping what I'm doing and sitting still. This goes all the way back in childhood. It has usually worked in years past because my life was structured in a way that allowed me a great deal of flexibility. However, I'd like to do more things, including things with time bound commitments. That would require that I have a way of dealing with breathing problems that don't require time outs as the only solution.
On the day I ended up at urgent care, I couldn't just stop what I was doing. Nor could I manage to both walk and keep breathing in order. By the time I could stop, my breathing was beyond where I knew how to manage it without more reliever - since I'd already used my reliever quotient for the day - GP said go straight to urgent care.
A similar attack right now would not send me to urgent care - both because my doctor is less worried about it escalating into something dangerous and because I have a better idea of how to handle even sudden flares (I was new to them at the time). However, the implication still stands: that some level of unattended breathing problems prior to this exacerbation was in fact slowing me down and limiting what I can take on. Coping by putting life on hold isn't really an acceptable solution.