What does “this” refer to?
Not that I know of, but I have had a stress test and two ultrasounds in the last year.
I do have one and I’ve used it. It usually stays in the upper 90s. They’ve also handed me one at the office and said go take the stairs.
That’s what I am doing, what I really wanted was other possible things to start asking about. I’ve bounced around a number of doctors over the years about this over the years. Until just the last few weeks it’s been something I just live with as it just happens. I’ve also kind of ignored it because I can swim for hours at a time, I did an 8.5 hour open water swim last year, and have zero problems breathing during such exercise, which is why I’m always confused when it happens doing no exertion.
I have made two appointments this week, and because they are all in the same office they will all have my medical records.
On the simple list: ask if a home peak flow (PF) meter could possibly provide some useful information. This is a simple device that provides an indirect measurement of whether or not there is any lower airway tightening, bronchospasm, going on specifically when you are experiencing the symptoms.
You would first (after being taught how to do it correctly) use it when at your best, then with the symptoms. A score under 80% of your own personal best score would be consistent with bronchospasm at those times causing the symptoms.
There are people who get bronchospasm early in exertion but who then have the airways relax as it continues. Or who only get bronchospasm in specific environments.
This would be a simple item to fix and can be done as any scarier options are being looked into as well. Whatever those might be.
If done and the PF does not significantly drop with symptoms then reactive airway issues are highly unlikely to be contributing. And coupled with past pulmonary function testing the lung is not likely the issue.
My final thought is that the most important thing is likely to be confident of what it is not: to prove it is not something potentially life threatening or that requires intervention before permanent damage occurs. That is likely mostly in the heart realm so getting a confident all clear there matters most.
A bit more to add.
More on the bit about some initial exercise allowing a refractory period and good endurance performance afterwards (especially for swimming, in which warm humidity air is a less potent trigger than dry air is):
Your doctors can also do a formal challenge test as part of pulmonary function testing with you breathing in a hyperosmotic substance to see if such triggers bronchospasm.
And the symptoms with laying down does suggest the possible contribution of gastroesophageal reflux, as has been mentioned. That can trigger airway reactions also.
I saw my pulmonologist yesterday. This was not suggested as something to do. I did redo a breathing test, the third since August, and they’ve all been the same. He also looked at my CAT scan and said he didn’t see anything. He called in the cardiologist to look at something but that doctor didn’t see anything either.
I see a gastro tomorrow so I will ask her about it as well. I was put on an acid reducer as well. But that’s all the testing that’s been done and nothing else is being looked at for the next 6 weeks.
I did a step test yesterday, I had done that one before, and the doctor didn’t seem to think anything was out of the ordinary. I’m not sure about breathing in anything else, but I’m guessing the doctor thought of all of that.
I, a general pediatrician, of course defer to an adult pulmonary specialist, yet still get annoyed at this. The question I’d care about is what is happening when you have the symptoms occurring. Your having no pulmonary function abnormalities while symptom free is important to document but is not, IMHO, sufficient to disprove transient bronchospasm in certain environments or circumstances.
Your presentation is not completely classic for the common diagnosis of transient exercise induced bronchospasm, but given that your team is already crossing off the scary things and into thinking about uncommon conditions, the old maxim is worth repeating: “common things presenting in uncommon ways are more frequent than uncommon things presenting commonly.”
Good luck and again getting the potentially much more than life annoying diagnoses eliminated is most important in any case.
I started struggling with short windedness about 5 years ago, primarily when walking. All the testing showed nothing wrong. Because of painful back issues when standing or walking I had gradually reduced the time on my feet each day to almost nothing and my legs became really out of shape. The leg muscles are very large and I have larger than normal muscles in my legs anyway. If they are out of shape they will emit more co2 than in shape muscles. The co2 is what makes you feel breathless. My heartbeat would be close to normal yet I was gasping for breath all the time. I started using my legs more and walking around a bit more and I have seen drastic improvements. 6 months of less activity might produce this effect.
When I was doing the step test yesterday I had some mild symptoms, I noted the times, but when I asked the doctor he didn’t really seem to care about it. I think I will pick up one of those Peak Flow meters since they are cheap enough and get some numbers. My only real problem is it happens at any time, but I can go for months without it happening and then it comes back every day.
I would go with that, but I swim at least a few times a week, and try and walk and take the stairs when I can. I’m not in the greatest shape I could be, but I’m in pretty good shape.
How did the gastro visit go?
Went ok. It was virtual so she couldn’t do any physical exam. She wants me to try the acid reducer for a month or so to see if that helps. So long as it doesn’t bother me when I try and sleep I can deal.
She did suggest writing down what I eat and when it happens to see if there’s any correlation. I also bought a peak flow meter to see what happens when I do have the symptoms.
Well I’m still alive, but I’ve not gotten any answers. I think the tadalfil that I was given in early Oct for prostate problems might be the cause of my chest pain. I didn’t put two and two together because I had been taking it for over a month before I got my first chest pain.
I did get a peak flow meter, took measurements for 3 or so weeks at different times of day and when I was feeling I couldn’t breath, they all came out about the same. I talked to the pulmonologist today and he told me that the meter wouldn’t tell me anything.
I ended up getting really bad chest pains every couple of days. Twice I was unable to swim because of it. I ended up going to the emergency room one evening as well. They couldn’t tell me anything either, just that I wasn’t having a heart attack. I stopped taking the meds for a week and it seemed to help, then I went back on just to see and the symptoms returned. I’ve now been off for two weeks and had a pain the other night, but it seems a bit different.
I saw my pulmonologist today and he said he didn’t know what was going on and he wants me to see another pulmonologist tomorrow. I have a feeling I’m going to be bounced around between doctors, I just hope they can figure something out.