My experience vs. medical tests-- I lose.

February 1, 2006 12:59 AM

AsthmaFilter: I feel like I can't breathe. My asthma care nurse says my lung function is better than normal-- how can this possibly be?

Had it for 20+ years, currently on Qvar and Albuterol, just went to the asthma care nurse on Monday. The visit raised more questions than it answered. She said the tests revealed I have better lung function than the average numbers for a 35 year old woman. I don't understand this, because I feel like I can't breathe even when I'm supposedly breathing better than normal. My peak flow meter indicates I'm still in my "Green zone" (80% of full capacity or above) when I'm gasping like a fish out of water. I feel chest tightness, have wheezing when I breathe out very hard (i.e. when measuring peak flow), and just generally have the feeling I can't breathe. I doubt it's a panic attack because I don't feel panicky, and I have had panic attacks in the past and this does not feel the same.

I keep running into a wall with all these people (Kaiser docs and nurses), because they all have an attitude of "We don't give a crap how YOU feel your symptoms are, we did a test and what the test says is far more important than anything YOU have to say."

After a 7 year ordeal of:
1. thinning hair &
2. other symptoms of hypothyroidism so blatant that every doctor and nurse I ever met immediately asked me when I had last had my thyroid checked, and
3. being refused thyroid pills based on the results of the tests, and
4. having all my hair grow back when the test finally came back "right" and someone finally deigned to give me some damn thyroid pills...
I don't really trust test results so much. I don't deny that they are useful, but I don't think they should trump the experiences of the person that the illness is ACTUALLY HAPPENING TO.

I'm having trouble even looking this up, because I don't know what the hell it's called when you feel that you can't breathe but your lung function is apparently fine. Googling false/illusory shortness of breath/SOB/dyspnea in all its iterations turns up nothing useful. Any idea where I can find out maybe what this is and if it's serious or not? The asthma care nurse was very dismissive when I told her I still felt short of breath regardless of the tests. Any idea how I can get the doctors and nurses to actually listen to me? (Besides not going to Kaiser, I mean... that's not a possibility right now.)

posted by Shoeburyness to health (9 comments total)

My asthma is the same way - when I went to regular doctors they kept telling me my lung capacity was better than normal even though I felt like I couldn't breathe at all.

I can consistently peg my peak flow meter at the top of its range even when I'm in the middle of an attack and gasping for air.

I finally went to an allergy/asthma specialist and they ran some better tests (they should be giving you at least two different numbers from a good test, for large and small airways) and established a baseline for my lungs. Now, years later and on the right medication, when my doctor tells me I'm close to 100% I actually feel that way.

You probably do have asthma/COPD and your "normal" lung function is higher than the average would suggest. Or their tests are crap. You know what you're feeling, and any doctor who tells you you're fine is wrong.

So, I'm afraid my suggestion comes down to "not going to Kaiser." Or at least trying different locations/doctors within their system until one takes you seriously.

You might try talking to a local allergy/asthma clinic. Some of them do clinical trials and you can sign up to get free treatment and medication as part of a study. Mine has also been quite willing to help with payment plans and such when I was poor.
posted by mmoncur at 2:43 AM on February 1, 2006

If you're more inclined to listen to your body than to tests, you might want to play around with this stuff if you haven't already done so. I'm not personally asthmatic but I have several friends who have used this method with good results.
posted by flabdablet at 3:12 AM on February 1, 2006

I have higher than normal lung capacity for my size and age, too. (I was a singer, and I think that might have something to do with it.) The thing is, when you are at 70% of your lung capacity, you're going to be feeling symptoms even if your 70% is another person's 95%. It's how it relates to your capacity and not anyone else's. As mmoncur says, you probably need to find a doctor, perhaps an asthma specialist, who will find a proper baseline for you.
posted by litlnemo at 4:01 AM on February 1, 2006

Increases in forced vital capacity and vital capacity are the hallmark of obstructive lung disease, in which rubric asthma is included. People who have asthma inhale with greater force in order to get air down into the alveoli, which are blocked by secretions and spasm. Over years, this increase in inspiratory pressures expands the anatomical and functional dead space of your lungs, and even the girth of your thorax, causing vital capacity to read out higher.

In this case, then, higher is not "better." Higher is a marker of increase in the severity of your disease. That would make it more like "worse."

You don't need to understand this, but your doctor should - you need to find a doctor who actually attended that lecture in med school. Ditch the guy who is telling you to be pleased because God has Super-Sized your lungs; he is a quack.

just went to the asthma care nurse on Monday

Oh. Duh. Nurses aren't trained to understand the pathophysiology of disease. Some of them do anyway, but it's not expected.

See a pulmonologist.
posted by ikkyu2 at 8:07 AM on February 1, 2006

Get a new doctor. Be firm and consistent. Studies have shown that women have more problems getting doctors to listen (male and female) to them than men do.

Anyway, some causes of breathlessness include:

Lung disease
Cigarette smoking
Asthma
Emphysema
Coronary artery disease
Heart attack
Interstitial lung disease
Pneumonia
Pulmonary hypertension
Dust-laden environment
Allergies
Congestive heart failure (CHF)
Heart arrhythmias
Deconditioning

Not many of those are something I'd want to screw around with. If my inhaler didn't make me feel better, I'd go to the doctor, and I don't even have health insurance.
posted by xyzzy at 8:35 AM on February 1, 2006

Xyzzy, another doctor might not be an option under a Kaiser plan. (And why don't you have health insurance? Don't fuck around with this, dude, if you can possibly make some sacrifices and buy it, do so - the risks are too great.)

And Shoeburyness, you need to consider that not going to Kaiser IS a possibility right now. Take a moment and consider all the ruinous financial, personal and professional things that could happen as a result of finding some alternative insurance and care. Now take a moment and consider as an alternative, death. You cannot tell me that and of those other things are worse.

I'm not going to second-guess an actual physician so you can look to Ikkyu2's comments for some validation about what the problem is, but you need to be serious about demanding proper care. If you have to buy some independent insurance, be a pest to Kaiser's administration, go to the emergency room and fake being indigent, pay out of pocket somewhere else, or simply park yourself in that Kaiser exam room and refuse to leave until they address your concerns, do it.

My apologies if you've been standing in the waiting room with a bullhorn and haven't gotten the attention you need anyway, but it's been my experience on every level that people are very reluctant to buck the system when the Authorities give them the shuffle-off, particularly in medicine. This is the one area in your life you and everyone else needs to never ever back down, even if it means everyone around you thinks you're an asshole. At least you'll be a LIVE asshole.

From a financial CYA, you should also document, document, document. Put your concerns about being ill-served in writing to Kaiser and your physician. Look up your State's insurance regulation board. For me it's VA but for Colorado look here. Kaiser has to answer to them and it's possible that if you pay out of pocket elsewhere you could demand reimbursal if you can demonstrate they were not serving you correctly.

Good luck.
posted by phearlez at 9:02 AM on February 1, 2006

I'm also on Kaiser, and I understand the struggle to find a doctor who shares my goals. It's easy to be intimidated by medical authority. I hope your plan has some similarity to mine. Change doctors. Here's how:

1. Call Kaiser and ask to "de-panel" your current doctor.
   
2. Every month (at least here) Kaiser creates a list of doctors who are available to be paneled. This list will include all ranges of medical professionals, including nurse practitioners, physician's assistants, and PhDs. Decide what you want--male, female, etc.
   
3. Find out who keeps the list of "available panel doctors" and call them.
   
4. Find out who meets your criteria from the list, choose one, and make an appointment with him/her.
   
5. When you have your appointment, explain in clear terms what your health goals are.
   
6. Repeat until you find someone you think will work.

Yeah, I know this is bloody hard, but your doctor is the single most important person to your health, after you. It's your life on the line. Get someone who will listen to you.
posted by frykitty at 10:19 AM on February 1, 2006

Oh, crud, I just realized you were seeing nurses, not your regular physician. Follow steps 2-6 to get one.
posted by frykitty at 10:21 AM on February 1, 2006

Shoeburyness: I have had the very same experience. Very frustrating. I still don't have an answer, but going on a stronger Advair inhaler helped a lot. (I'm on the 500 now.)

Might help to schedule a visit with the doctor, rather than the nurse. If you can, get a referral to a pulmonologist.

Phearlez: some of us can't get insurance, especially if we take expensive perscriptions. In my case, I've been turned down by six different health insurance providers. My scrips run about $600/month.
posted by shifafa at 6:53 PM on February 2, 2006