Help me explain my lungs to my doctor - Asthma question(s)
March 31, 2021 11:01 AM   Subscribe

My Asthma is weird (maybe) and I'm getting push back due to mental health history- YANMD but advice would be useful so I can self advocate and get what I need. Need to see my doctor in a day or two.

I am a 35yo female. I have Asthma. Brief history: I was diagnosed at 2. I was hospitalized at least once a year through elementary school. I've collapsed a lung (at 4ish?). I have had pneumonia multiple times, but not as an adult. As I got older things got better- also asthma medications improved and I've avoided hospitalization. I also had a nurse for a mother and physicians were pretty happy to do lots of stuff at home that they wouldn't do for other people, and I've been comfortable pushing things. I was a sick kid, missed tons of school (at least 20 days a year).

Fast forward to adulthood: My resting heart rate is high. I am taking Ivabradine for that, as my resting heart rate was sitting at ~130ish when I went on the meds. It's inappropriate sinus tachycardia, no abnormal findings other than my heart zooms along. I ended up in the ER with a heart rate of 160 at rest during an asthma flare prior to the cardiologist's involvement.

My problem:

Overall my lungs are in decent shape. My lung function tests are normal for my age range. My peak flow is up to 500 when I am free and clear of symptoms. But any changes hit me HARD. It's like my lungs have compensated to work with me just perfectly and any change is a huge struggle. My oxygen saturations are okay at rest when measured. But I get out of breath very easily. I get winded talking. My peak flow might be 350, 375 when this happens. My pulmonologist does not want me to take medication unless my peak flow is 250. I've never been able to wait for my peak to get that low because I'm having symptoms and need to live my life? Right now I just take my inhaler in half doses, and because I haven't had a flare-up in almost a year (yay) I haven't really had to face this issue. But I am sick. (regarding COVID concerns: I am fully vaccinated and will be covid tested in the next day or so)

Things I do: If I have mucus, I make sure I try to clear my lungs out by leaning over and breathing hard, and coughing up whatever I can. I proned before proning was a thing. I am accused of using albuterol too frequently, but I hate that shit, and I avoid it at all costs. If I need it it's because I'm having clear symptoms that are impacting my day-to-day activity.

When I was discharged from the hospital for the cardiac stuff, I almost blacked out walking out because I walked for too long, from my asthma symptoms, even though the hospital told me I should not be taking any medication and that I was fine. I know to take breaks and to rest. I do. But I'm also 35, and five days before I could have traversed the distance no problem. I get told its in my head, that there can't be anything wrong because my oxygen saturations are okay, and then am shooed off as someone with anxiety.

Note: there is a previously from March of last year which was likely COVID. My oxygen levels were dropping walking, and I was tachycardic (even on the heart medicine!) which now we know is totally classic covid and if I'd presented a few months later I would have been hospitalized hands down. Also, I was given a lung function test when I was sick in March. They said it was fine, but I went to the bathroom and coughed so hard I turned blue and ended up sitting on the bathroom floor (of a hospital). I begged for her to walk test me and she noted oxygen decompensation during activity and then blamed it on my heart and gave me the albuterol advice to do it based on peak flow decrease of 250. I was very very very sick. I am nowhere near that sick now, but the dismissal has definitely stuck with me.

Anyway, I have the suspicion that my lungs are scarred, that even though my air capacity is good . I believe that I have long-term lung damage that isn't easily seeable. This is just made-up theory stuff I really don't know. I think my body has little flexibility in dealing with lung stuff and I'm not sure where to go from here. I'm being told not to take medication when it's impacting my day-to-day life. I'm having a flare-up and am going to need to see this person in the next few days, does anyone have advice on something I can say or advocate for? I need to be taken seriously.

My PCP is great but is not affiliated with the hospital I would use if I went to the ER. I really need a pulmonologist on board with me. Ideally, the one I am seeing now. She tends to be test-based and fairly thorough, so I think if I push with the right words I might be able to have a decent discussion with her and get some support.
posted by AlexiaSky to Health & Fitness (11 answers total) 1 user marked this as a favorite
Are you taking an inhaled corticosteroid? I'm over 50 and have had asthma since I was a baby. I was also hospitalized for asthma almost once every year from elementary through high school. It's been much better managed with albuterol and Advair. I've also been on Dulera.
posted by shoesietart at 12:02 PM on March 31, 2021 [1 favorite]

so when i had trouble breathing like that, and my oxygen sats were 97% or better, but i couldn't fucking BREATHE, it was heart failure. i was tested for all the "lung stuff," sat in the chamber to do that testing, and everything was perfect. so i would talk to the cardiologist some more. and also your pulmonologist some more. who is the one telling you this is in your head? stop going to that person.
posted by misanthropicsarah at 12:19 PM on March 31, 2021 [10 favorites]

You sound like a worse version of me, and I really feel for us. Have you had a stress test?
posted by Dashy at 12:23 PM on March 31, 2021

I also have asthma, and a dear friend has severe asthma that sounds very similar to yours (in fact I would almost say you were her, except she has a great doctor). So most of my tips are from her that she’s relayed to me, and now I relay to you:

Shortness of breath is a code red term. She’s told me, and it’s true, if I’m having even a little trouble, tell the doctor I am having shortness of breath to get good care and have them listen to you.

She also has heart issues related to asthma, including a racing heart. You’ve had an EKG and scans for that, I think? Hers end up being related to anxiety from the asthma, as in her body gets stressed that she can’t breathe and medications aren’t helping, so it ends up manifesting in a high heart rate, even though she doesn’t necessarily feel anxious. Therapy and an anti-anxiety med have helped.

There’s an experimental drug she’s on now, it’s an injection every few months, and she thinks it’s helping. Is this the medication your doctor doesn’t want you on, or is it your inhalers?

The main thing is she has an excellent doctor. She cries when she tells me about her new doctor, because for decades she feels like no one has cared enough. Can you find a new asthma specialist who will be your advocate? I know that’s easier said than done, but just in case it’s an option.

And then for the particular lung issue, sometimes it helps if I tell my doctor in concrete terms what my goal is. Such as “I cannot sleep through the night with my asthma, and my goal for this appointment is to find ways to let me do that.” Or being clear “I get winded talking, even though my lung functions test fine. I want that not to happen, what can we do?”

Mostly I want to commiserate. Worrying about breathing is a panic-inducing beast unlike any other thing.
posted by umwhat at 1:02 PM on March 31, 2021 [6 favorites]

I know you want to keep seeing your current pulmonologist, but is this person actually serving you? It's worrying to me (an asthmatic layperson) that you're out of breath during conversations. Did the pulmonologist not have a coherent explanation for these scenarios, or for why you can't adjust maintenance meds? I'm not saying she's wrong about things, and it's great that she's thorough about testing, but the rightest doctor in the world isn't a good doctor for you if y'all can't communicate well.

Also, whoever is shaming you about albuterol needs to stop. The reason they're worried is probably because overuse can make problems worse in the long run, but if you're overusing from physical need, then there's an underlying problem that's not being addressed. Or your maintenance meds need adjustment. Blaming the patient isn't helpful.

Overall, you might want to open this conversation with COVID concerns. Am I reading right that your problems have been getting worse this year? Someone saying, "I think I may have COVID aftereffects," is unlikely to be brushed off, I think, even if your main issue is not necessarily COVID related.

Sorry you're going through this.
posted by desert outpost at 1:05 PM on March 31, 2021 [3 favorites]

Seconding pushing the cardiology angle. Women are often undertreated and underdiagnosed for heart issues. They affect your subjective feeling of being able/unable to breathe.

The problem, as I see it, is that there is a tradeoff between using the albuterol and maintaining an appropriate resting heart rate. It's also tough to tell what is your heart and what is your lungs. So you have a situation where your heart is bad, that makes you feel out of breath, so you take albuterol, which could then make your heart worse...etc.

But the answer is not to just tell you not to use your albuterol, it's to get you on a better/appropriate maintenance meds.
posted by Rock 'em Sock 'em at 1:22 PM on March 31, 2021 [2 favorites]

IANAD, IANYD, etc. You talk about your oxygen levels and peak flow at times when you're not in the doctor's office, and it's unclear to me if those are actual measurements with actual equipment, or that you're Feeling like those measurements are off. If it's just been your Feelings so far, I'd request to your doctor that you set up a plan for measuring these outside of the doctor's office. Pulse-ox meters, flow meters, blood pressure cuffs (which also measure heart rate), etc are fairly cheap and maybe you can have your at-home version, along with an agreed-upon schedule to get some type of daily or weekly average, along with readings when you're feeling the worst?

This is only useful if you're objective about taking and recording the measurements properly, so I echo others' comments to be open minded that it may be another body system letting you down. It'd be a shame to be so focused on your lungs that you're missing a different (solvable) problem elsewhere.
posted by sdrawkcaSSAb at 3:00 PM on March 31, 2021

Best answer: IAAP(pulmonologist), but IANYP. If your PFTs (pulmonary function tests) are indeed normal, then I agree with the people above the cardiology angle. If you have not had a TTE (transthoracic echocardiogram - heart ultrasound), you should probably talk with your Cardiologist about one. And then, if that is normal and you are cleared by your Cardiologist, the test you want to speak with your Pulmonary doc about is called a CPET (cardiopulmonary exercise test). It's an exercise test that monitors cardiac function, lung function, and muscle function simultaneously in the context of exercise, and can tell you which of this three systems is limiting your activity. I do not know how many centers are able to do them, but I do know that the knowledge of reading/interpreting them (beyond the basics necessary to pass Pulmonary boards) is NOT common, even among Pulmonary doctors. You would likely need to go to the closest large academic institution for this. Again, this is not medical advice, but to give you vocabulary and awareness of tests that are out there so you can speak with YOUR medical team.
posted by Osrinith at 3:48 PM on March 31, 2021 [5 favorites]

Response by poster: *To answer questions:

I've had an echocardiogram, it's normal. My cardiologist is zero percent concerned about my heart aside from its fast without medication . There's no other rythymn abnormalities.

I'm taking a combo of Breo and Montelukast for control.

My asthma is the most controlled it's been in my life. I've had... One moderate exacerbation (now)in the last 12 months. I can go months without using my inhaler at all (provided I don't do vigerious excersize, which I just don't do. If i did that I'd need to take it way more often). The better control of my arms happened after the last change in control medicines from last year. My asthma gets way worse in the context of other illness, and social distancing had meant that I've managed to avoid getting sick, and so i haven't had problems.

It's just when I get sick the floor falls out from underneath me and I'm experiencing symptoms that I'm being told not to treat.

I can tell you when I get sick I'm having a noticable drop in peak flow, (500 to 375) my lungs usually sound wheezy, other people like coworkers are stopping me and being like hey you are out of breath are you okay? I have an oxometer and peak flow at home. If I'm super still the oxometer reads well, but if i move around it's fluctuates to much for me to tell when there's an actual drop vs it's not reading. I can tell you that I can have some fluctuations with coughing fits, but I seem to go back to steady 97 ish while sick and compared with 99 when well which is a sight difference bit but very much in the realm of normal, even though subjectively I feel way worse. My heart rate seems to start going up and up before ​my oxygen level starts to drop. But the difficulty breathing happens first.

I understand that my asthma is going to come with some symptoms that are uncomfortable. When I'm having trouble breathing I'm going to be extra tired. I'm going to need to take things slow. I'm going to need to be careful. That breathing is going to feel more difficult .That isn't my complaint. My complaints are that I'm stopping while walking at a slow pace because I'm getting dizzy. My heart is pounding. I feel very short of breath. I see doctors and am told well you must be fine, because they see me sitting perfectly still and I tend to look okay when sitting perfectly still when I'm sick. Or that I have decent airflow that isn't as restricted as they would see in other asthmatics, but I'm not handling it well.
posted by AlexiaSky at 5:52 PM on March 31, 2021

Have you been tested to see if you have eosinophilic asthma ? I had really bad issues despite being on Advair, and was also told I was over-reliant on albuterol. And I was having sudden dizziness that was likely due to serious sinus issues. So I ditched the doctor I had and went to a new practice, and they tested me and said I was a good candidate for some of the newer medicines. I started on Nucala (once a month at the doctor's office) and then I went to Fasenra (once every two months also at the doctor's office). Now I take Fasenra myself at home every two months along with Breo once a day. I'm not well (still a lot of coughing) but it's made a huge difference in my quality of life - and there is very little dizziness. Worth checking maybe?
posted by gemmy at 8:08 PM on March 31, 2021

Also, since you think you were sick with it before, have you considered that it might be Long COVID? My understanding is that some people are suffering from numerous symptoms, including breathlessness and heart issues as the aftereffects of a COVID infection.
posted by gemmy at 8:21 PM on March 31, 2021 [1 favorite]

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