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.
Re: taper.
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.
i think very little will be gained at this apiontment, frm ur list id say pred tapering is the most likely. make sure you know what tests you are and arent getting, and why, more will come from future appointments!
Not much constructive I can really add - I never seem to be very good at getting the most out of appts - btu good luck and let us know how it goes!
Am assuming that since you seem pretty organised you've written it all down in an easy-to-read-in-constrained-time format?
Thank-you everyone.
Appointment went well and pretty much as I expected. But it was also puzzling.
The good news is I get to start tapering down the pred again so long as there are no major flares. Minor symptoms are ok and shouldn't stop the taper. So tomorrow down to 30mg. Yeah!
The bad news is that he doesn't have a good idea of what is going on, or whether it is even asthma. My chest x-ray last November was not what it should be - he is sending me for a chest CT scan for follow up.
He also wants a full pulmonary function test - diffusion as well as breathing before and after ventolin.
In office spirometry was confusing - the flow curve was normal (non-obstructive) and FEV1 and FVC were above 100% predicted even though when I walked in the door I was coughing mildly but from the gut (not throat tickle). He also heard diffuse wheezing when listening to my chest.
One might think the reason for the good spirometry is that ventolin works. I used 6 puffs of ventolin on my way over. I walked over because it was a beautiful warm day outside and when I was healthier I would have normally walked that distance (about 5km) rather than take a taxi or bus - I'm sick of acting sick. But years ago when the last spirometry was done during an extended asthma attack, FEV1 and FVC were still less than 100% even after ventolin. Also from what I've read the chest x-ray mentioned above is consistent with either COPD or asthma with airway remodelling. However if that is the case, the spirometry does not match - both of those explanations would also show at least some obstruction even after ventolin since they are non reversable.
He has a few ideas of what might be going on, but most of those should have been responsive to steroids and clearly steroids haven't completely solved the problems, given that I'm on a fairly high dose and still having shortness of breathe from time to time even just walking. But he says partial steroid resistance is rare and shouldn't be considered until other things have been ruled out;
One possibility that wouldn't involve steroids: the ""cold"" I caught on the plane at the end of last October might have been whooping cough and all this shortness of breath is the left overs. I was tested in November for whooping cough but it was negative. However, the test only works in the first few weeks. I wasn't tested until 4 weeks after so it could have given a false negative.
This, in my opinion, would be the best answer since any lung damage from whooping cough would heal up over time and not be permanent. Asthma is not actually the diagnosis I want here - because there aren't a lot of good options left if everything I'm on already isn't working.
If everything else is ruled out and it does come down to asthma, he said Xolair might be the next step.
Tomorrow I get to make phone calls to schedule appointments.
Well, it looks like I won't have to wait as long as I thought for answers: PF test is scheduled for tomorrow at 1:30pm. CT is scheduled for Tuesday next week. I have a follow up visit with pulmonologist scheduled for April 8 to go over the results.
Wow, that is fast! Hope you're on the road to having a better understanding of what's going on!
I hope I am too - but I'm not entirely sure I want to know. Some of the alternatives to treatment resistant asthma aren't all that better. But I suppose information is still good or else no one would bother to order the tests.
Today I had my pulmonary function test and things are beginning to make more sense.
Basically I just have big lungs: my total lung capacity is 125% of predicted. After 24 hours without reliever (long or short acting), the before ventolin was again hanging around 100% for both FEV1 and peak flow,...
BUT after ventolin, just about everything increased significantly, sometimes by quite a lot.
So at least a part of whatever is going on is reversible (yeah!) and presumably asthma (reversibility is kind of the definition of asthma):
FEV1 - increased 15% - I understand 12% is needed for a diagnosis of asthma.
FVC - increased 12%
FEF 25-75% - increased 60%
FEF 75% - increased 127% (yup)
Peak flow - up 9% from 110% to 120%
However, between the chest x-ray and the fact that I'm not fully controlled with ridiculous amounts of medecine, the pulmonologist suspects that there might be something in addition to asthma, and I guess I'll have to wait for the CT scan to find out. The CT he ordered is an HRCT. The referral says to look for signs of asthma or anything else that would explain why I'm not responding to all of these medications.
But when I looked HRCT up, it also said that its main purpose is to look for ""insterstitial lung disease"" and many forms of that cause irreversible lung damage. So I'm just a bit worried, but hoping for the best. It would really suck if I'm stuck with this level of asthma for a long time or have asthma on top of another chronic lung disease.
On a slightly more positive note: the results are consistent with the conclusions I had tentatively drawn from my own symptom/peak flow logging. This is making me feel better about my symptom awareness. It looks to me like I'm generally on the mark:
* I generally get an improvement in symptoms disproportionate to peak flow. In today's test, ventolin increased FEV1 (15%) more than peak flow (9%). If symptoms parallel FEV1, then this would explain why I feel a lot better after ventolin than one might expect from the change in peak flow.
* I've suspected for a while that my yellow zone begins when I have trouble getting above 420 even though that is 100% predicted for my gender/height) on my at home peak flow meter. If the start of the yellow zone is 80% of personal best, that would imply that my personal best should be somewhere around 525, i.e. 120% of 420. Well, lo and behold - the pulmonary function test shows that post ventolin I'm 120% of predicted.
So next week they CT my lungs. It will take 10 days to get the results back from it.
That was quick! v glad things are beginning to make sense and that you have some 'formal' back-up for the numbers you'd been getting at home. I can understand why for these tests they have to go on best predicted (since they can't be measured at home, hard to know what someone's personal best would be) but it is nonetheless frustrating when people get overly rigid about 'well you MUST be ok with these numbers' - very confusing as well. I (and the doctors) have also found reversibility helpful here, and also comparison of numbers (FVC/FEV1 ratio in particular).
I hope the HRCT turns out ok and it isn't something extra. I had one last year, in my case to look for bronchiolitis apparently, because I had been getting these oddly low results for FEF25-75 and my consultant said he was puzzled, and though it might be just bad technique because this measure is v sensitive to technique (always an issue with me and LF/spiro though oddly my inhaler technique is apparently perfect - shame as that would be an easy solution), he couldn't be certain and wanted to make sure there was nothing else going on. Clear, I'm glad to say; I think he wanted to cover the bases.
The whooping cough sounds a possibility though. I am no expert obviously but given what I've been told by physios/drs about coughing (if you keep doing it you stir up the inflammation) I can well believe that combined with asthma it might have really stirred things up and it could take a while to settle down.
Really crossing fingers for you and hoping for a good outcome from all this!
in reply to
Really crossing fingers for you and hoping for a good outcome from all this!
Thanks. For some reason waiting seems harder now that I'm closer to answers.
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