UPDATE: lung function tests normal. Had an ABG (arterial blood gases), results are all over the place, specialist has no idea what’s going on! I have extremely high O2, low CO2, low bicarbonate, low sodium and alkaline pH. Booked in for cardiologist and stress test next week, followed by cardiopulmonary exercise test. Living in lockdown, disabled by this breathlessness. Can anyone relate?
I’ve had severe trouble breathing for the past month with wheezing and chest tightness. It started the same day as a mild cold: sneezing, runny nose, fever, headache, nausea. No cough or phlegm. The cold went away after 2 days but the shortness of breath did not. I’ve been into hospital because the chest tightness got worse. All tests came back normal: bloods, troponin, d-dimer (clots), even pregnancy. Chest xray was clear, ECGs normal, O2 saturation normal, heart ultrasound normal. I was discharged and my doctor ordered an urgent CTPA, which also came back normal. COVID-19 and all other viral tests normal. My doc has now ordered a lung function test, which will not happen until next week. I’ve tried antibiotics and ventolin, plus over-the-counter pain relief, without success.
This has never happened to me before. I’ve had pericarditis before, but this feels vastly different. I’ve never smoked, have no history of TB or lung disease or heart disease, and as a singer, my breath control is normally excellent. I’ve been previously diagnosed with lupus and positive anticardiolipin antibodies. I have small-vessel vasculitis, which is currently well managed with hydroxy.
The bit that really freaks me out is while at the hospital last week, the breathlessness suddenly spiked to the point of suffocation. It happened after I walked up the corridor and back. It backed off after about 30min, but it was scary to know that can happen anytime. The breathlessness gets worse on exertion, including talking, which means I am unable to work indefinitely (I have a talking job) - until they find a cause and I get better. I also cannot sing, which sucks on both a personal level and also because I’m part of the music team at my local church. I’ve also pulled out of that indefinitely. Because of the danger of breathlessness and suffocation, I’m restricting my travel to very local services, and only for short periods, eg. seeing my doctor (who is blessedly only 5min away) and visiting the pharmacy. I’m virtually housebound. It’s like being in lockdown all over again.
So here are my questions: any clues as to what this could be? Anyone experienced anything similar? I asked my rheumy if this could be lupus-related, and he said probably not, because lupus normally causes things that tests can see, like clots or plural effusion. My GP, who is excellent, is baffled. Any help appreciated, and of course, your support is appreciated too!