Unmanaged and unpredictable Asthma. I welcome your opinions

@ogmom I'm sorry to hear what you have been through - people sometimes don't realize how difficult and even life-threatening asthma can be until it happens to them or someone they love.
We have a great support community here, so someone may have an exact suggestion for you. I know you have seen many doctors, but have you been treated in a multi-disciplinary practice with specialists in Intractable Asthma? Mayo Clinics (http://mayocl.in/1mtmR63 ) have Asthma programs in all 3 of their locations, Rochester, MN, Jacksonville, FL and Phoenix, AZ. Other specialty centers include Cleveland Clinic, Massachusetts General/Brigham, Duke University, Ohio State U Wexner Medical Center and U of Texas at Houston. I'm sure there are others as well.
Have you considered a referral to one of these?
Sue

@ogmom
I see the monitor had responded to you with recommendations. I too would asked have you tried going to a mjaor medical provider like Mayo Clinic, Cleveland Clinic. Mayo Clinic has pulmanary specialist and testing that is the latest diagnosis testing and treatments.

I just had a full pulmanary test done that showed some troubling areas but nothing that would have cause my asthma episode I experienced during a Sprint Triathlon swim. It seems to me if something goes wrong I do something or my body does something and cannot get enough air in. Then I start coughing up phlem.

Mayo and I are experimenting on inhalers to try using before race and I am also working with a speech MD. I know speech sounds suspicious but they are specialist in the throat area and also had another test.

My suggestion is see if you can go to a Mayo that is closest to you. I say that because I know Mayo is outstaing in their diagnosis and treatment of asthma conditions.

@ogmom how long you were on anti fungals, anti-virals, etc and did you get to have ID (infec didease) MD consult/ labs done/biopsy of black spot ? It does sound something infectious in nature and would warrant ID MD work up. I can relate to some symptoms - weight loss, not eating , hard to breathe. I was on azoles for 6 months after fungal infection in lungs, also lost close to 50 lbs, shortness of breath (SOB) and yes i was told that usually immunocompitent body fights it back and healthy immune system doesnt let whatever we inhaled to stick around in lungs. I tested negative for hiv (aquired immunodeficiency), but there is always primariry - so you would aslo want to ask allergy/immunoology MD to run all of your IGGs labs.
I was bed ridden good 3 months, multiple steroids, abx and antifungals that didnt work initially, then had labs done on antifungal meds absorption which was very low. ID md switched me to a liquid form and i finally (slowing over few months) started feeling like a human again :). ID MD worked with pulm and allergy md as a team, but she was running the show.
Looking back, it did feel no end in the tunnel - tons of labs, inability to move, body aches and yes loss if hope it will get better. Once you find ID md who is willing to figire it out, it will get better. Infections cam spread, so be careful.

Please ask for heart echo, fluid aroud your heart (from infection) can also give symptoms of SOB
I hope you start feeling better soon!
Lena

Hi Lena -- Thank you for the kind words and information. Yes, Infectious Disease doctors finally diagnosed me after culturing my sputum. They also pinpointed the right antibiotic to kill the bacterial infection.
I'm just shocked at how different my breathing has been in the recent past compared to the first 50+ years. Everything seems to be on the decline. I am definitely making an appt. with Mayo to try to figure things out bc I cannot continue to live like this. It isn't living.
I wish you well on your journey and appreciate you reaching out.
-- Christine (ogmom)

@sueinmn thank you so much for your support and information. I'm going to try to get an appt. with Mayo in Jacksonville. I will keep everyone updated.

@jc76 I am definitely going to try to get into Mayo. Your story is both inspiring and scary. I am sorry you go through that. But I am happy that you are even able to attempt a triathlon. That can never happen for me. I hope you get to continue your athletics unencumbered by breathing problems. Best wishes.

@ogmon
Just did a Sprint Triathlon today. Can't say I did well but came in second place in my age group and got medal. Now may sound good but only 2 of us in the 75-79 age group. We too were the oldest racers in race. He (the other in my age group) finish the race 30 minutes faster than I did. He can run but I have to race walk.

At 77 I just want to finish don't care about placing. But for many of us out there still doing these at advanced ages it gets harder and harder each year. I feel like I got run over by a truck. Had stiff head wind on bike portion, and during run (I race walk) it was around 95 degrees.

But I finished and when got home showed my wife my 2nd place medal not mentioning there was only two of us in the 75-79 (but I think by now she knows this since been doing them since 2017). I think I was close to dead (not a good word is it!) last in overall results.

Hi. So sorry to hear of your struggles and I can relate to almost everything. I have been on all of the medications you had mentioned and then some. I was on Xolair for 15 years before it stopped working - and that was the beginning of biologics. I was on Tespire - and had gotten worse from it, but Dupixent has been better for me. Recently, was in hospital - 240mg of Steroids IV for 10 days - which was awful and finally tapered down to a "normal" level - but still on them and don't know if I will get off. Please see a cardiologist - as from all the steroids, you may have some cardiac issues which are now interfering with your recovery. I was also considered a "mystery" as to why my asthma has gotten much worse in the past 2 years +, being an asthmatic since I was a child. Also - Brovana (Arformoterol) - a 12 h - twice a day nebulizer has been helpful (this is long acting Albuterol), along with Budesonide nebulizer every 12 hours, have been helpful, along with daily medications. An old time medication - Theophylline is still around and can be helpful as well. Good luck and hope to hear that you are improving.

Thanks for your comment. I’m curious if you had Covid. I had a very mild case in 2022. Now some doctors are suggesting I may have “Long Covid.” Of course, that doesn’t help bc so little is known about Long Covid and how to treat it. I hate to think about it, but my health decline coincides with COVID. But I never put it together bc my Covid was so mild, I would not have thought or known it was COVID if I had not tested.

Thanks for your response. I did get the Covid Vaccine (which took it's toll on me). It took me 6 weeks to recover (had to increase the steroids after the 2nd shot), and it took me another 6 weeks after I received a booster. I have been very lucky with my family, not permitting me even to go to the supermarket and I was very careful. However, I did get Covid last summer and was sick with after effects for about 6-8 weeks. I was on Paxlovid, too. There is much that is not known about Covid, and it does affect the heart and the lungs as well. I have had lingering Long Covid symptoms and it has taken longer for me to get better from my most recent hospitalization for asthma (in January). Let me know if you have questions. We can privately email, too. Good Luck.