Unmanaged and unpredictable Asthma. I welcome your opinions

Posted by ogmom @ogmom, May 24 3:24pm

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 90s

Then 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.

Interested in more discussions like this? Go to the Asthma Support Group.

Don't forget the extreme increase in smoke from wildfires. That kind of smoke can (and has) literally traveled across the entire country.

Air Quality Alerts have increased a great deal.

Using an air filter in the house and a mask outside, could significantly reduce these exposures.

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Three More Things:

1) My wife had a hair dresser. He had bad asthma. We live in New Jersey. The hairdresser moved to North Carolina. Within a couple of months, his asthma simply disappeared.

2) Some people find that sea air / salt air helps their breathing. I have severe asthma. I was told that if I could walk on a beach an hour daily it would help a lot. Have not had the money to move or make this happen, but passing along what I was told. I have been in sea air a bit...and it does always help some.

3) Might also want to think about reducing your general exposure to chemicals in the house...meaning replacing ammonia and bleach with milder cleaners like distilled white vinegar, etc.

Here's one article about that:

IMPROVING INDOOR AIR QUALITY
Checking and improving your indoor air quality
Do you need to improve your indoor air quality? What do you smell when you walk in your front door? Do you smell air fresheners, dryer sheets? Who knows what chemicals are in these products and how many are harmful to your health?

Who knows what they do when they accumulate in your body? Or what their synergistic effects might be? [“Synergistic” means that 2 + 2 = 5, that when two or more are added together, their total effects might be worse than the sum of either separately.]

https://www.createyourhealthyhome.com/improve-your-indoor-air-quality/index.html
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Most important asthma is treated by a Pulmonolgist
The allergy testing is not helping unless it is an allergy to a food or medicine. Most allergists do not test for medications.
You need to use a lung doctor, a pulmonologist.

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@gift440

Most important asthma is treated by a Pulmonolgist
The allergy testing is not helping unless it is an allergy to a food or medicine. Most allergists do not test for medications.
You need to use a lung doctor, a pulmonologist.

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Thank you. I have two pulmonologists and have an appt. at Mayo to see a pulmonologist there. Crossing fingers.

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@ogmom

Thank you. I have two pulmonologists and have an appt. at Mayo to see a pulmonologist there. Crossing fingers.

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Good news! You will get better.

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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 (Bronchiechitis ) 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.

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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.

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