Living with asthma: Come introduce yourself & meet others

Tagging members @egibbens @cwal @pacathy @squire123@squire123 @lindsay208 @cathee @lenchiksf @ecmoandrrt @kimberkoe @cayenne @thisoldewe @otter2154 @stlsampsondev @mpeters @kmattson @birdiemomma to follow the new Asthma Support Group https://connect.mayoclinic.org/group/asthma/

What's your asthma story? How are you doing today?

So the story started when I got Covid at work from a coworker. December 24, 2021. 4 days later I felt better, just like getting over the flu. On January 5, 2022, I brought my Christmas tree down stairs, I was coughing my heart was beating fast. I sat down for a minute and felt pressure in my chest. I started having a hard time breathing out as the pressure built up. I had a loud expitory wheeze. My son has a nebulizer with albuterol so I used it. The pressure went down and I could breathe out again. I went outside to get some fresh air, the cold air made it happen again. So I did another albuterol nebulizer and went to the emergency room. They said this is normal for getting over Covid but wanted to have me stay for more tests and observation. I didn’t want to be in a Covid room and get sick again so I left. I made an appointment with my doctor he gave me steroids zpack albuterol inhaler symbicort. After he looked over the hospital tests and checked me out. He also sent me to a pulmonologist and cardiologist I had 1000 extra beats in my heart and became steroid dependent for the asthma quickly. The pulmonologist eventually put me on dupixent which helped for about 6 months. I was diagnosed with severe persistent uncontrolled asthma, chronic atalectasis, and inappropriate sinus tachycardia, which did clear up when my breathing improved. I eventually had to go on tezspire injections because the dupixent stopped working for me. Tezspire seems to work, but I have a hard time in hot humid and freezing cold weather. It’s changed my life. I had to retire early and treatment is focused on me not getting worse.

I used prednisone for cough/asthma three times this past year so I was notified I will be taking an additional medication. I assume that means the Wixela I’m already taking now, plus a mystery medication. I will learn more tomorrow.

Our history over this past is similar. Please let us know what the new mystery med is.

@colleenyoung thank you for starting the group !

My pulm md switched me from advair discus(powder, medium strength) to advair hfa 230/21 couple of years ago. It works better on controlling symptoms as i used to need steroids throughout the winter, 4-5 times during the season. I think last winter was only once although 3 weeks of steroids and 3 weeks of augmentun (sp) abx as i also had sinus infection.
Much regards,
Lena
Ps will do intro later

Isn't it interesting - we have been reading each other's posts for a while now, and here we are with a group just for the oh-so-common, but different for each person condition of asthma.

My story goes back many years - when I was seeing a substitute doc for (yet another) bout with bronchitis over 30 years ago, she asked "How do you manage your asthma?" I must have looked as stunned as I felt, because she added "Has anyone ever told you that you have asthma before?"

This was an AHA moment for me - ever since my teen years, I had intermittent breathing issues, which my husband attributed to me being "out of shape" even though I was a runner, biker and skier and kept up with 2 active kids. The problems always occurred in conjunction with cold, or hot humid weather, or in the midst of an allergy attack or respiratory infection. Every cold seemed to turn into bronchitis, a sinus infection or pneumonia. Early on control was achieved with Singulair and albuterol inhalers, plus steroids as needed, and I stayed healthy for close to 20 years - even though the albuterol made me shake like a leaf.

Fast forward 25 years, I was having intractable asthma attacks, constant bouts of bronchitis, coughing constantly, exhausted and losing weight. I was diagnosed with Bronchiectasis, Pseudomonas and a Mycobacteria infection in my lungs. After 18 months of antibiotics, the infection was under control, the coughing gone, etc. But the Bronchiectasis and asthma - still here, for the rest of my life. And I was dealing with a tight chest, more shortness of breath than should be, and increasing intolerance for the side effect of albuterol/levalbuterol.

My pulmonologist added Symbicort, I keep up my Bronchiectasis airway clearance, and I'm back in control. She explained that Symbicort was originally approved for COPD, but now is the second line of defense for asthmas - turns out the continuous low dose of an inhaled steroid plus the long-acting beta-agonist works well for many of us, and I am now mostly controlled. I am glad that there are now alternatives to lugging a nebulizer everywhere we go. And I am happy that there are now biologics to help those for whom inhalers are not enough.
Sue

By the way, if anyone interested
https://ginasthma.org/2023-gina-main-report/

Absolutely STELLAR! I just downloaded this and read a few chapters - and wow, what a difference it would make if every professional treating asthma had access.
I heartily recommend anyone struggling with asthma control download and read the relevant parts of this guide.
Based on what I just finished reading, I am going to ask my pulmonologist whether we can do a trial of stopping the Singulair (Montelukast) I have been using for many years, as long-term use issues begin to emerge.
Sue

My pulmonologist suggests that my asthma was “awakened” at age 56 due to a severe respiratory event about three years ago (likely Covid or RSV). For 60 days I suffered at home under all the Covid lockdowns; I could barely walk 10-feet, couldn’t breathe, debilitating cough, fatigue and anxiety. Finally got a a notable pulmo group in Atlanta who quickly diagnosed me with adult onset asthma. Subsequent tests (FPT and CT) revealed that my lungs were fundamentally fine. There is a genetic component in play for me … my mom got an asthma diagnosis at 46 and is doing well at almost 80. Three years later I’m in a good place only taking Breo daily after sampling a buffet of asthma meds. I still struggle with excess mucus production that ebbs and flows, yet it is manageable.

I developed asthma as a adult after a series of respiratory infections. I started having sinus issues and developed seasonal allergies. I had one calendar year where I kept getting respiratory infections, actually I was sick 8 times in 12 months for about 2 weeks each time. This was back in the 80's when I was a young adult. Finally after a lot of this, I saw the primary care doctor who made a remark that I probably had pneumonia. I had been using a cough suppressant and sleeping sitting up because if I layed down, all I did was cough, and that was probably a mistake to try to suppress phlegm rather that help it move out with an expectorant. It was after this, that I developed chest tightness and was diagnosed with asthma and issued an Albuterol rescue inhaler.

I have allergies that trigger my eosinophilic asthma, and I have thoracic outlet syndrome that make my chest wall too tight on one side of my ribs. It has at times restricted my chest wall movement resulting in trapped phlegm that causes a chest infection. This can periodically happen and it usually starts as a sinus infection, and when I feel my throat start to get a bit sore from post nasal drip and my resting heart rate goes up a little bit, I know it has moved into my lungs and my air absorption is restricted by phlegm.

I found a solution for this because of being a Mayo surgical patient where I was asked to preemptively treat for nasal infections with an antibiotic ointment in my nose for several days before surgery. This works great to quickly clear my sinus/lung issues and I breathe better again. My doctor lets me keep a prescription on hand for this.

I also have done work with my physical therapist and done myofascial release to get my chest wall and lungs moving better. That helps a lot and improves the functioning of the weaker left side. Exercise does help keep my lungs working better.

I pay attention how I feel from day to day and tend to stay inside in my filtered air when there are high mold spores counts outside during damp weather. Molds are a very big trigger for me and I need to avoid them as much as possible because medications are not enough. I also do allergy shots, but really don't like doing it, but it does help when allergies flare.

Jennifer