I've talked to so many doctors, I welcome input from people living with asthma.I a 54 y.o. I've had it my whole life. Was not a big issue other than every doctor told my parents not to smoke around me, and they completely ignored that. Few ER visits as a child and lots of resentment, but about it.I've struggled more with asthma as an adult. Have gotten allergy shots for 30 years. Have had a maintenance inhaler, rescue inhaler and nebulizer forever. My allergist does regular pulmonary function tests. Of course, never when I am not feeling well; only on good days. But life was livable.In the past two years, my asthma has exacerbated beyond anything I could imagine. You name it, over the years I've been on every inhaler. About two years ago, I added Dupixent to the regimen, as we saw me going down a slippery slope. I was having surprise asthma attacks where I had no idea the trigger.So for two years or more, I have been on Trelegy, Dupixent, Singulair, Mucinex, Albuterol inhaler, Albuterol nebulizer or Levalbuterol if I can get it and many rounds of prednisone. Things would go well for a bit and then I'd get taken down for like a week or more by severe shortness of breath. Couldn't take a deep breath, couldn't yawn. Got out of breath carrying a laundry basket. Little to no cough. No phlegm or coughing up any junk. Just super tight breathing. Pulse oxygen mid 90sThen last November admitted to hospital for 12 days. Chest xray was clear. Started me on anti-viral, anti-fungal and anti-biotics with steady intravenous steroids. Round the clock DuoNeb and MucoMist. Second day in did a CT with contrast. Both lungs partially collapsed and a black spot that took two more days to diagnose as a bacterial infection of something I inhaled (stenotrophomonas maltophilia). I'm told healthy people inhale this all the time and the body kicks it out.After being released from hospital, got about six weeks before my next bout of shortness of breath. Like, I cannot breathe. Lost 20 pounds over two months because you cannot eat if you cannot breathe. I chose trying to breathe over eating.Switched me to hydrocortisone instead of prednisone and in February, switched me to Tezspire from the Dupixent because Dupixent was not the miracle drug for me that it has been for some. Switched from Trelegy to Breztri just to try something new.Daily Albuterol or Levalbuterol nebulizer, Breztri, mucinex, singulair, fomoterol nebulizer (sp?), albuterol inhaler about every two hours, oral steroid and Tezspire monthly. Recently started taking Mullein tincture to see if it helps.No dairy. No gluten.Back in the hospital in April for two days because I couldn't breathe.I have two pulmonologists and an allergist. All three say, "You're a mystery." All feel they have tried everything. I don't doubt it, but I'm getting really tired of feeling like this. Was just up all last night because around 8pm I felt the tightness come over me.I've had moments of just wanting to give up and stop trying so hard to breathe. But I'm not ready to do that to my family. But I am exhausted and not flattered by being called a mystery.Clean house, hard floors, air purifiers, no scents, recently sanitized air ducts, allergy skin test clear but for crab and some grass I never heard of.Is there a test I haven't had? A medication I haven't tried? Anyone have any suggestions?If you have read this far, thank you for that.
You need an Infectious Disease Dr. Pulomonologist will work with Infectious Disease Doc. on the breathing issues. Its the Stenotrophomonas that is causing the breathing issues but it is hard to tell the difference in asthma and a bacterial infection. It feels the same and hard to tell which it is.
I am still trying to get over Stenotrophomonas as well. Have had asthma all of my life, been on allergy shots for 52 years. Asthma was totally under control for the last 20 years until I started picking up bacteria. It will not be a mystery to an Infectious Disease Dr. They take sputum samples (spit in a cup) send it off and the lab will tell them what grows out and what meds that will kill it, beat it back or is immune to it. Because of picking up so many bacteria, I have developed BE (Bronchiectasis ) which is where your small air ways widen over time and you can not get rid of mucus. I use an airway clearance vest 2x per day which does seem to help. I can't stress how important it is to find a good if not GREAT Infectious Disease Dr. Having asthma is a group that is high on the list for developing Bronchiectasis. My allergist had no clue either but my Pulomonologist depends on my Infectious disease Dr to figure out how to treat the bacteria.