Every quarter in Israel I can change doctors and the end of a quarter is coming up (end September). I'm increasingly frustrated with my current pulmonologist, but I'm worried that I won't do much better with a new pulmonologist. All the pulmonologists in town work that are part of my health plan work at the same hospital so I fear that their attitudes, methods, and biases about asthma will be shared. On the other hand, switching GP and practices has been a very positive move for me.
The reasons I'm frustrated are described below. I suspect some of them might reflect organizational biases, but I wonder if some of them are more about his personality. If its organizational biases, then switching won't help. If it is personality, then a new doctor might help if he or she is more comfortable answering my questions. Your thoughts would be much appreciated. I don't want to look like I'm doctor shopping, but I'm not very happy with some of the things I see in my current doctor.
a) I'm having a lot of difficulty seeing how his definition of asthma and proof of asthma fits anything I find in the standards documents or the research that supports them. If you use the Global Initiative on Asthma (GINA) standards to evaluate my symptoms, family history, peak flow journal, PFT result, my response to treatment and the work done on differential diagnosis, I would be classed as having severe asthma with two different kinds of supporting objective evidence (positive bronchodialator response and high intra-day PF variation).
My pulmonologist on the other hand believes he has no proof that I have asthma, thinks that if I do have asthma it is mild, that my on-going symptoms are either the result of steroid withdrawal or my ""overreacting"". That's a huge difference, and every time I try to ask him questions about why his conclusions seem so different, we either run out of time or he gives an answer that makes no sense to me given the studies and research reports I've read.
He's never given evidence of any alternative diagnosis including the claim that I'm ""overreacting"". I don't understand how one would have respiratory symptoms in response to steroid withdrawal unless there is an underlying respiratory problem that steroid withdrawal reactivates. He seems to have a different definition of asthma severity than GINA, BTS, and many other organizations. He seems to have different standards of proof - so much so that I wonder whether he and GINA even define asthma the same way.
b) Part of the reason we run out of time is that he starts challenging my right to ask questions even before I can ask them. During my most recent appointment he told me I shouldn't read pulmonology research and standards because I didn't have the clinical experience he did.
And this isn't the first time. When we went over my PFT results earlier this spring he first cut me off saying that ""He's interpreted thousands of PFTs so there was nothing to question"". Then he told me PFTs were too complicated. Then he asked me if I was a physiologist, in a tone that sounded like ""how can you ask (have the right to ask?) these questions if you aren't one?"".
c) He also doesn't seem to know the facts of my case and that makes it hard for me to trust his conclusions. I can live with ""I don't remember - I'll need to look it up"" --- he has lots of patients and I can't imagine he memorizes all of their cases top to bottom. But making assertions contrary to fact is another matter: if you already believe you know something you'll never double check it and you'll never know you are wrong.
He was so convinced he had no proof of asthma he claimed I never had a positive bronchodialator test. Positive according to his definition is 15% and 200ml improvement. I did in fact have a positive test (15.7% and 420ml) by his standards. But his standards don't match cut offs in current major standards documents which are (12% and 200ml) for GINA, ATS, ERS, NHLBI (USA) and nearly everyone except the BTS which prefers 400ml - but I'm positive both by 12%/200 and by 400ml as well.
d) I really don't know how to deal with situations where he cites reasons for his positions that are contrary to the research studies I've read. He's the pulmonologist and I'm just a lay person who has read a lot. I'm not an expert. There is always the possibility that I've misread something. I don't want to offend him or make him defensive by directly contradicting him. He barely seems to be able to tolerate my asking technical questions. However, soph's and other's technique of asking questions with an answer that is already known doesn't really work when the doctor disagrees with the ""known"" answer.
On the other hand to accept his opinion without a cogent explanation for his opinions feels like putting my brain in a meat grinder. I really don't think being a patient should require me to act brain dead. I do think I'm smart enough to understand an explanation of why I'm wrong.
For example, several professional and standards setting respiratory organizations consider high intra-day variation in peak flow as diagnostic of asthma, unless the variation can be proven to be the result of some other disorder (usually in the upper respiratory tract, e.g. VCD or trachomalacia). My peak flow can vary a great deal throughout the day (average for the last 4 months is 40% a day) but he absolutely refuses to consider that evidence of anything - not asthma, not lack of asthma control, not even something worth investigating to see if there is a non-asthma reason for it.
Rather he views this variation as affirmation of his belief that PF is unreliable. He thinks PF is unreliable because it is low tech. Indeed, research does show it is very hard to predict an individual's peak flow from just age and height. Different meters can give different results for the same person. If one wants to compare a specific value of PF to some population norm, PF is not reliable. However, the range of normal intra-day variation in peak flow using the same meter everyday is much more predictable. This has been confirmed by multiple studies. These studies do not in any way rely on speculation about the high tech quality of a peak flow meter. Rather they assess predictability based on statistical methods. Low tech or not, normal lungs do not produce widely varying peak flows - in people without a history of asthma or other lung disease, intraday variation averages about 8% a day and 20% is the outer limit of normal.
e) He doesn't seem especially interested in digging deeper when symptoms don't seem to match the numbers. That frustrates me because it makes it very easy for him and other doctors that rely on his opinions about me to think that my symptoms are coming out of thin air and have nothing to justify them.
If I hadn't challenged him to look down the page on my pulmonary function test results he would have never noticed that I had lung volumes way above what they should be and resistance above the upper limit of normal. He would have stopped at the predicted FEV1, seen it was normal pre-bronchodialator and never looked further.
I don't think he ever noticed that 25% (1.4L) of my lung isn't even reachable when I inhale (lung capacity measured by gas diffusion is 75% of lung capacity measured by body plesthymography). All the sources I've read think that a difference in measurement that large reflects either operator error or evidence of obstruction, but pulmonologist either never noticed it or doesn't think it is proof of a problem or thinks it is an error. I'm not sure which because I never get to ask that sort of question.
He also never checked my flow rates against absolute volume (total lung capacity - expelled air). I had to do a ton of reading on my own to figure out that it probably should have been done. Did he choose not to do it because he doesn't agree with the science behind it? If so, why? Did I misunderstand the science? Or because he just didn't dig deep? I don't know, but given the way my questions get cut short, I'll probably never get to know.
The flow volume curve printed out on most spirometry results maps flow rates to expelled air, not absolute volume. However, the theoretical model of lung mechnics predicts flow rates based on the current absolute volume of air in the lungs. To know the current absolute volume one needs to know both the actual starting volume when the lung is fully inflated or total lung capacity (TLC) and not only the amount of air that has been expelled so far. Expelled air is used as a proxy for absolute volume because in office spirometry can't measure TLC. You need special equipment for that.
In most people using expelled air as a proxy isn't a problem because most people, even asthmatics, have normal or nearly normal sized lungs. But some of us have really oddball lungs. My TLC is 125% of normal (99%+ percentile) and when TLC is that big it can make using expelled air as a proxy for absolute lung volume very misleading.
My flow-volume curve looks great if you compare my flow rates to predicted values using expelled volume because my starting flow rates reflect my higher starting lung volume and appear to be higher than predicted. I have a lot of resistance in my lungs but not enough to completely cancel out the higher flow rates associated with higher lung volumes.
I look a lot worse if you compare absolute volumes. At a lung volume of 4.5L my flow rate is 50% of normal. At 3L my flow rate is 10% of normal. At 2.5L, my flow rate is zero and a normal lung for someone my height (1.63m) is still able to push out air. Even a person tall enough (1.8m) to have a normal TLC as big as mine can still push out air. I cannot. As a result, I end up with a lot more air than usual stuck in my lungs (RV/TLC = 45%).
The same now-she-looks-good-now-she-doesn't happens with FEV1. In prediction equations height is a proxy for TLC. If you look at my FEV1 for someone with my age and height I'm above normal. If you look at the same value for someone my age with my TLC, my FEV1 is 81% of predicted.