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conniec (@conniec)

Do Bronchiectasis and MAC go together?

MAC & Bronchiectasis | Last Active: May 8, 2021 | Replies (66)

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@daviseyes

Good Morning: New to the group wish to share personal experience with BRONCHIECTASIS.
Bronchiectasis would first introduce itself to me as a 28 year young Mom just 3 months
shy of giving birth to my second Child. Three years of respiratory infections, non productive
cough and repeated hospital admissions for ” pneumonia “, diagnosis would be confirmed
when an experienced Physician who was only known to me because of so many Emergency
Room visits, spoke to my Husband with respect to what he believed warranted further respiratory
investigations to accurately define what was causing these reoccurring Pneumonia’s.
The end result … Bronchiectasis, with severe damage to the right lung. A right middle lobectomy
would give me my life back with only one Respiratory hospital admission in 20 years.
In 2006, I would become symptomatic of this Disease again. Repeated respiratory infections, non productive cough and the familiar associated Lung pain is dictating my life once again some
36 years later. Thought to be a hands on educated glass half full kind of person with respect
to my Disease, the medical team who have guided me on my Respiratory journey, have since retired or have passed on. Enter a new medical Team. Young textbook smart recent Graduates in the field of Medicine has created a new symptom to my respiratory treatment plan … Fear!
Bronchiectasis patients should not all be treated with the same brush. I have spent the last
two years of valuable time defending my symptoms, my personal respiratory experiences including
the rationale behind the right middle lobectomy and the existing treatment plan designed
for me by Respiratory Physicians at a Hospital in London, Ontario, Canada. New knowledge
of the risks associated with the long term use of Antibiotics, the pro’s and cons of Arosols
versus multi doses of Puffers during flare ups and the precious success of preventative
measures to reduce inflammation and trapped mucous plugs and the accompanying
Lung, rib cage and body pain associated with excessive coughing, inflammation, scaring
pockets of atelectasis and from diffused bilateral Bronchiectasis has left me exhausted
physically and emotionally. It is difficult enough to co exist with Bronchiectasis. The
one size fits all approach to treating Lung Disease dictated by my new Physician,
has come with a price. THE LOSS OF MY QUALITY OF LIFE!

Thank you for letting me vent. A Mom and Grandmother I tend not to share with them
the day to day challenges of living with Bronchirctasis. During flare ups they worry
enough about my care. I will find my strong self again and I give myself permission
to sit for a moment in feeling defeated for the first time in the 36 years of living with
Bronchiectasis. In my 65 years I know not to define all Physicians by the
mis-guided actions and personal bias of another.
Blessings to fellow Respiratory patients.

Sincerely

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Replies to "Good Morning: New to the group wish to share personal experience with BRONCHIECTASIS. Bronchiectasis would first..."

Welcome to Connect, @daviseyes. Thank you for sharing your experience with handover in care. It is so challenging when our health care teams have to change. You will many great people on this forum who will listen, share their experiences and tips, as well as offer a shoulder to lean. In particular, I’d like to introduce to Jennifer @megan123 who is also from Ontario, Canada.

With so many years of living with bronchiectasis, I’m confident that you have a wealth of information and experience to share with the group. Welcome!

@daviseyes, Welcome and thank you for shareing your story. It makes me mad and sad because it is so familiar to most of us. We go through alot on a daily basis and tend to keep it to ourselves as not to worry others. We try very hard to keep up, but eventally our lungs remind us that they are in charge. Then we have to stop and do the work and research and learn from fellow patients. If you havent done so, go back and read through the posts on this forum. You will find resouces within the post that fellow MAC and bronchiectasis patients have found helpful. Priceless information and a truly careing group of people are here. Oh, And venting is very much encouraged. Stay strong and take care!
Becky

Hellooooo my fellow Canadian. I live in Toronto and have been diagnosed with MAc NTM and Bronchiectasis app 5 months ago…I find the emotional component to this just as important as dealing with chronic disease. I have a psychotherapist MD, covered by ohip
London would have this support as well……we cry because we have been to strong for
To long…❤️

Thank you for responding fellow Canadian.
Busy time. A recent flare up sent me to the ER
and after 2 days was able to produce sputum for culture.
It tested positive for Aspergillis. Will do a further test by
my Respiratory Physician by weeks end. Anyone heard of it?
Thanks

@daviseyes, good morning to you. That aspergillis is a nasty fungus that invades the lungs of people who’s immune system is compromised. Which ours is because of our bronchiectasis. There are different species. It should be treated right away. They use an antifungal and steriods and may have to do surgery if it becomes resistant to the treatment. You should Google it and learn what you can, before you get intouch with your doctor. Hope this is helpful and stay strong up there in Canada.
Becky

Thank you fellow Canadian. Respiratory disease knows no boundaries.
Grateful to Mayo who have given us this valuable opportunity to connect
with those who journey with us both in experience and their personal understanding
of living life with Bronchiectasis. I have done so for 36 years but have never walked alone.
Five (5) years ago the sudden, unexpected and without farewell passing of my Husband
Wayne, would challenge my resolve. In his Honor I continued to deny Bronchiectasis the
right to remove me from the living. With the loss of my Medical Team who stood beside
us throughout these 36 years, combined with symptoms of active Bronchiectasis and the recent diagnosis of Aspergillosis I felt weak and defeated. The unexpected support, knowledge and the experiences both from fellow Patients and their Family’s, is giving me much needed strength
every single day. I am grateful for your voice.
Blessings,
Judy
( DavisEyes )

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