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Anyone else have a sibling who also has Bronchiectasis?
Hi All,
I wrote a short message to my 3 sisters in the UK over the weekend. I had told them I was visiting the Mayo to see a pulmanologist so was sending an update as I had been officially diagnosed. I was really surprised when when my older sister responded to say she has also been diagnosed with Bronchiectasis (via CT scan) about 3 years ago. She may have told me but I didn't remember - we are not really close as I left the UK 36 years ago. It was interesting to hear her treatment protocol which is virtually non-existent. She was referred to a respitory therapist and shown some breathing techniques. She uses a sea-water nasal spray (over the counter) and tries to "huff" rather than cough but says she's not very successful. I'm not sure if she has been tested for MAC or other infections but she takes no meds unless she picks up a cough/cold from one of her grandchildren then its typical antibiotics She appears to be doing fine.
We had an identical up-bringing living with 2 smokers, neither of us ever smoke. I also experience a lot of second hand smoke as a flight attendant in the 80's. Our oldest sister died from lung cancer at 68 but she was a life-long smoker.
Just wondered if there is any kind of genetic pre-disposition to this disease? Our Mum suffered terribly with bronchitis enough to leave the country and live in a warmer climate for 30+ years.
I would rather neither of us had this darn disease but its good to have a Bronchiectasis Sista!
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Hi- Yes there are negative affects of true coughing for us. Have you googled: side affects of coughing with bronchiectasis...??? Not much there however if we can avoid a true cough that is best that we not cough. Not an easy thing to do, avoiding coughing at times, because of how our body reacts. Sometimes I'm not sure if I coughed or huff coughed in the difficulty of the process of trying to clear out the mucus and mucus plugs.
Hopefully others will tell of their experiences with the true coughing with Bronchiectasis.
Barbara
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3 ReactionsMake sure your throat is open when you huff. Apparently you shouldn’t cough after huffing. Maybe hold back on the pressure of the huff also!
I’m not sure about too much nebbing causing wet lungs there were some articles on this site where some Dr s are not so keen on it??????? If my throat is closed when I huff, I’ll cough too!!
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1 ReactionI’ve been seeing a genetic physician trying to figure out were I got Bronchiectasis and my 6 brothers and sisters didn’t.
I take Bactrim 2x a day, and albuterol 4x a day in a nebulizer.
I also have had 3 cancers thyroid cancer, Breast cancer, & Leukemia.
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1 ReactionI'm curious as to why you are pursuing this? Well over half of cases of Bronchiectasis are idiopathic - "a disease or condition of unknown origin" and knowing the cause doesn't change how it is managed. Also, if you had radiation treatment for any of your cancers, especially the breast cancer, you would be at increased risk of developing BE.
The reason why is that I have had Bronchiectasis since I was in the 7 grade. Since then I was diagnosed with CLL, thyroid cancer, and recently breast cancer. My 3 brothers and 3 sisters don’t have any cancers.
Not sure if there’s any other cancers that I can get. 🤪
Does an immunologist check more deeply for immune function issues than a regular Dr does? Seems like your immune system is key to your history?
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3 ReactionsHi @ellieoak
I’ve read more lately that the cause of up to half of the cases of Bronchiectasis are idiopathic in nature.
There is a lot more research on the effects of inflammation in our bodies including infections that were untreated or improperly treated, so I do wonder if there will be a more precise diagnosis for some people, at some point.
It doesn’t change the diagnosis but might alter the approach to the care of patients and an earlier detection through CT scans would help many. It might enable more people to begin clearance and lessen the possible damage to the lungs.
Lots of info on the internet of course for anyone to get a quick overview of causes, and I suspect you’ve already done this too.
This info from the UK. Wishing you all the best.
https://www.nhs.uk/conditions/bronchiectasis/causes/
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4 ReactionsThank you, I will check with the immunologist.
@mustlovedogs in the podcast NTMtalk the pulmonologist comments that he has many mother/daughter patients and while I don’t recall him making any firm conclusions about that fact certainly the fact alone is interesting. It certainly suggests BE can run in families. I am not aware of others in my family having BE but lung disease generally runs in my family. My sibling has asthma which they do not control well and I am concerned more may be going on there. I had no sense whatsoever that anything was wrong with my lungs at time of diagnosis, and yet … here I am.
Thank you for writing your post and especially "I had no sense whatsoever that anything was wrong with my lungs at time of diagnosis, and yet … here I am."
In my family my Mother died with Emphysema, my brother died with COPD and Bronchiectasis, and here I am with Bronchiectasis myself. They were both smokers, I was not....... BUT AND HOWEVER ..... I was around both and especially with Mother who was a heavy smoker. Not saying that environment alone, smokers, is what caused my BE but it could have added to all the reasons I have Bronchiectasis and maybe a genetic factor there also. My belief, as I have mentioned before in a post, my opinion is: "It is never just one thing rather an accumulation of things". For me, in particular, with acquiring Bronchiectasis, multiple things in my life's journey on this earth could have put me at risk for Bronchiectasis. Don't think I, we, can truly say what caused our BE.
Why I said 'glad you posted your remark' has to do with wanting my "baby" sister to see a pulmonologist to discuss possibly having a C Scan. She nearly always has to clear her throat, she has had several bouts with bronchitis, colds frequently throughout her life, Covid 2x, and is around a dear friend who smokes plus, as I, around family members that smoked...and she did smoke for a short time.
Hope I am wrong with being concerned for her with my suggesting she be tested. I am sure you also are concerned for your sibling.
I sent her your post. I want her to see your last sentence. I would rather she error on the side of caution and see a pulmonologist to rule it out or.....know.... (hopefully it would be negative) and have an early diagnosis if found.
Again, thanks. Your sentence and experience just might give her some food for thought with what I have discussed and suggested she give thought to.
Barbara