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Questions on COVID and Bronchiectasis
I received a CT confirmed diagnosis of Bronchiectasis two days before Mayo shut down for COVID in March. Although I had the results, my appointment with the consultant and additional follow up tests were canceled. They sent me an Aerobika in the mail. (Nobody told me I needed to sterilize it or my nebulizer, so that’s a new worry.) Months went by while I laid low in my house afraid I would certainly contract COVID the minute it sensed my lungs in the vicinity. My anxiety level has been over the moon and I became a recluse, crying at every turn and feeling lonely and terrified. In June, I finally worked up the courage to reschedule my follow up tests and pulmonologist appointment. Interestingly, Mayo requires a COVID test before pulm function tests and when they tested me, I was positive for COVID! Completely asymptotic. But I worry about getting it again. I was so careful and still got it. Are others out there feeling this way and how are you coping? I am falling ill enough about every 5 weeks to have to do a ZPak and now my doctor wants sputum cultures, which brings me back to my unsterile cleaning technique worries. We’ll see I guess. He also suggested sending me to Mayo’s Mayo’s Bronchiectasis Clinic. Any thoughts on that? I’m being seen by a resident whose being followed by a Staff pulmonologist, but I kind of think I should ask for an expert in the Bronchiectasis clinic. I seem to be trending worse. I also had the genetic testing completed and phone conferred with the resident because I am an Alpha antitrypsin MZ carrier and that is what they are attributing my disease to. So new to this with so many questions!
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Well Sue, I must admit your routine doesn’t seem as “daunting” as it has morphed into in my memory.
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2 ReactionsSue, thank you very much for this info. I think I had better step up my cleaning schedule ~ I do appreciate your input !!
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2 Reactions@mrf5629 Hi Beth. I too am an Alpha-1 carrier and have had bad lung issues my entire adult life. My mother was full blown Alpha-1 and passed away at the age of 58. I was always terrified that I too would not live beyond that age as I had been very ill since 2005. I am now 61 yrs old and doing pretty good except for low lung function and shortness of breath. But I ROCK ON! I hope you will read back over older posts on this site as there is a treasure trove of info here. You can scroll down the Discussion Board and click on a topic to learn about. i.e. water testing, swimming pools and hot tubs, shower heads, pseudomonas, etc. I encourage you to learn all that you can about your lung disease(s) so that you can be your best health advocate. Have you visited the Alpha-1 Foundation site as well? May I ask how you found this group?
Beth, the Mayo Clinic absolutely saved my life. I was in very bad shape when I started going there in 2013. In 2016, I was pre-qualified for a double lung transplant, I was able to avoid it by eliminating the massive infections I had going on. In 2013, I could not walk 10 feet without having to stop and sit and catch my breath. Going to a mall was out of the question, as was hiking and biking. Now, I walk and ride a bike indefinitely; provided the heat and humidity level isn't too bad. It was a long road to recovery, and it still takes diligence to stay well, but I did it. You can too!
Beth, I too have a sneaking suspicion that covid was here earlier than Jan 2020. I got a flu shot last fall as I have for the last 20 yrs. The flu shots never made me sick, but that last one made me feel like I wanted to die! I could not move for three days, because if I did, my head felt like it would explode and every muscle in my body hurt. I mean it hurt bad! I even am suspicious that that was no ordinary flu vaccine. I don't mean to scare anybody about getting your flu shots, but honestly, I am afraid to get one now.
@mrf5629 Hi Beth. I too am an Alpha-1 carrier and have had bad lung issues my entire adult life. My mother was full blown Alpha-1 and passed away at the age of 58. I was always terrified that I too would not live beyond that age as I had been very ill since 2005. I am now 61 yrs old and doing pretty good except for low lung function and shortness of breath. But I ROCK ON! I hope you will read back over older posts on this site as there is a treasure trove of info here. You can scroll down the Discussion Board and click on a topic to learn about. i.e. water testing, swimming pools and hot tubs, shower heads, pseudomonas, etc. I encourage you to learn all that you can about your lung disease(s) so that you can be your best health advocate. May I ask how you found this group?