Newly-diagnosed with Bronchiectasis and shocked

Posted by discerning1 @discerning1, Feb 8, 2022

Hi all.

Happy to discover this forum and would like some advice.

First, let me say that I'm in a state of some SHOCK following the discovery of bronchiectasis via a CT scan in January.

It showed that some of the bracchi in my lungs are enlarged.

I had been referred for the scan because for about two years I had a very slight cough, sometimes with a tiny bit of phlegm, but not always--but what really bothered me was a feeling short of breath on occasions (which seemed to develop over the past year).

I'm a 69-year-old American woman living in France, otherwise in good health. Regular exercise, eating sensibly. Never smoked.

I saw a local lung specialist who sent me for an array of blood tests--everything from HIV (!!) to a genetic test for cystic fibrosis. The blood analysis was all GOOD news. Nothing abnormal.

My follow-up appointment with the lung specialist was yesterday. I asked if this bronchiectasis would continue to evolve (i.e. worsen). He said he couldn't offer an opinion about that.

I asked if I should be using a nebulizer for the shortness of breath.

He had me breathe into a mechanism that tests (I'm guessing) the volume of lung function.

(It was all somewhat rushed --plus I'm operating in French, which I do not speak fluently--plus I feel so stressed.)

Based on that result, he said I didn't need any treatment (i.e. medication or nebulizer).

I have another appointment in May, as I plan to fly to the States, and he suggested a check-up before that.

He has NOT suggest a sputum sample nor a visit with a respiratory therapist.
Should I be pushing for that?

I asked about what else I could do to improve my situation. Vitamins, air purifiers (I already bought two!), use of humidier at night? Any further tests I should have (cardiology?). He dismissed all that.

Are hot baths or steamy showers bad? I'm confused by some of what I read on this site.
I was under the impression that steam helps my lungs.

Please share your thoughts.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

tlynng79 | @tlynng79 | Feb 10, 2022

In reply to @sueinmn "@discerning1 and @karissy I think most of us were shocked by our diagnosis. I certainly was..." + (show)

@sueinmn

@discerning1 and @karissy I think most of us were shocked by our diagnosis. I certainly was frightened when the pulmonologist dropped the diagnosis on me and told me "you can look it up on the Internet" - and I started to search. What luck that I found my way to Mayo Connect and got so much support from the other members here!
I want to let you know that things are not as dire or scary as they might feel right now.
Here are the things I have learned:
Not every infection requires antibiotics - there are guidelines for treatment, and many more conservative approaches available in some cases.

Many doctors, even pulmonologists, are unfamiliar with bronchiectasis. It is important to find someone familiar with it, or at least willing to consult the experts.

Bronchiectasis, according to my second & wonderful pulmonologist, is a condition you can live with, often for a very long time, by making some lifestyle changes to stay healthy.

My 4 big changes were - stay out of and away from hot tubs, use extreme caution with soil, peat & mulch (I'm an avid gardener), do daily airway clearance, and stay healthy with diet, exercise & avoidance of sick people. Even before Covid, N-95 masks were my friend during flu season & when doing emergency daycare for little grandsons when ill. Other people, whose disease is perhaps more severe than mine, or by nature are more cautious, take more precautions. You will need to figure out what works for you.

Airway clearance has been my best tool, and I learned about it here and through National Jewish Health (NJH) videos. The approach to airway clearance depends on the severity of your disease. In my case, there a 5 "tools" - mucolytics to thin mucus (Mucinex 600 LA & N acetyl cysteine 600 MG 2xdaily), daily 7% saline nebs, lots of water, huff coughing to bring up mucus, and if needed a PEP vibratory device (Aerobika is one) to loosen the mucus.

What recommendations did you get from your doctor when diagnosed?
Sue

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I also use the aerobika, supposed to do it daily to bring everything up and keep my lungs cleared, but it makes me so miserable and I hate it. It’s like the mucus never ends, I usually do it until the rattling in my chest stops. I just found recently that I also have a mild dilation of my aorta and it scares me that I put all this bodily stress on myself to clear my lungs and that now it may be damaging my heart.

discerning1 | @discerning1 | Feb 13, 2022

Thank you, Sue @sueinmn, for your response. The YouTube videos about breathing techniques (there are many) are helpful.

My case took an unexpected turn yesterday.

Taking the advice here to seek a second opinion and consult a specialist in bronchiectasis, I was given the name of a lung doctor in Paris who had helped a friend when she had lung cancer.

I had a conversation with this doctor yesterday, describing my symptoms and case so far. He asked to see my extensive blood tests results and spirometer results (that thing you blow into that tests your lung capacity).

He spotted something that my local lung specialist either missed or decided not to tell me. I have something called alpha-1 antitrypsin deficiency (Alpha-1). Turns out it is a relatively rare genetic defect--and it affects the lungs and liver.

The Mayo Clinic happens to be a leader in identifying and treating this condition: "Mayo Clinic is recognized as a Clinical Resource Center by the Alpha-1 Foundation. Patients suspected of having AAt deficiency should be referred to such centers for evaluation and management recommendations. Such patients would include those individuals with liver dysfunction and early-stage chronic obstructive lung disease or asthma that does not respond to treatment."

In retrospect, it explains why I had croup as a child and later why every cold I ever had finished in my lungs, with some level of cough/bronchitis. I'm lucky I've made it to 69 without more serious symptoms.

I wondered WHY one of my parents might have passed on this genetic defect. My father died of lung cancer, so he is the obvious candidate. During World War 2 he was exposed to excess radiation. He worked as a building engineer at Oak Ridge, Tennessee where the atom bomb was being built. I recall him saying how the workers had to wear badges that would turn black when they had absorbed the safe daily dosage of radiation. He said the men routinely ignored the badges--and worked on, even when the badge was black. Later in life, he had many skin cancers--as did the other men with whom he had worked at Oak Ridge.

Tomorrow I have to have another blood test--phenotype--to confirm this diagnosis--and the Paris lunch specialist wants to see my CT scan. He reassured me somewhat, writing that I have "minimal symptoms and normal pulmonary and lung function" (although I still have a little cough and feeling of shortness of breath on exertion).

Apparently there is treatment for this condition--injections to compensate for the deficiency of the enzyme involved--but I'm only just learning about this. If anyone else has this condition, I would like to be in contact. I'll check next to see if CONNECT has a support group for this specific condition.