Do Bronchiectasis and MAC go together?

Posted by conniec @conniec, Apr 27, 2017

I was diagnosed with this in January. Had pneumonia in November. My dr didn't tell me to get a sputum sample til my second visit this past week. He started me On nebs and aerobika treatment. I had a second Ct scan and am not sure if there were changes. Does bronchiectasis and MAC go together. It seems like most people here talk about MAC and not bronchiectasis?

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

@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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@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

REPLY
@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

Jump to this post

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 )

REPLY

Hello. My name is Teresa and I've just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I'm seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB's today. I'm in my 50's and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I've faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

REPLY

Welcome to Connect, @tfritschy; we're so glad you've joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

REPLY
@tfritschy

Hello. My name is Teresa and I've just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I'm seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB's today. I'm in my 50's and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I've faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

Jump to this post

@tfritschy, Hi Teresa, wow you have been through alot. Breast cancer is such a rough disease, I helped my mom get through surgery and radiation. You are made of tough stuff and I think this will be something else you will be able to manage.Iam glad you have found the group and you are able to share your experence with all of us. We learn from each other by doing so. Reading through past post will help you have the confidence to ask for what you need. We all will get throu this together. Stay strong!
Becky

REPLY
@tfritschy

Hello. My name is Teresa and I've just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I'm seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB's today. I'm in my 50's and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I've faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

Jump to this post

Hi Becky, thanks for your encouraging words. I really do think that having a community of support from people who have lived through similar issues will be an enormous help. I went through the whole gamut with the cancer treatment (surgery, chemo, radiation and meds) but always had the hope and expectation of achieving remission, and life going back to a somewhat "normal" state. That treatment probably played a role in this condition though, as the area of cavitating lesions is exactly where I received the radiation. This chronic condition feels more oppressive, and I'm not sure if I can expect anything more than to just maintain my status and keep my symptoms from becoming progressively worse. If the MAC is successfully eradicated does the underlying bronchiectasis become less symptomatic? Would love to hear other perspectives on this.

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@kanaazpereira

Welcome to Connect, @tfritschy; we're so glad you've joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

Jump to this post

I'm glad to have this forum available for questions and support. My reluctance to do the antibiotic treatments was primarily because of some noted side effects, particularly potential hearing/vision loss. I'm a sign language interpreter and both senses are critical for me to be able to do my job. Five years ago I had sudden sensorineural hearing loss to a degree that affected my work, and I'm terrified to think of losing more. I already wear glasses and am concerned about that getting worse too. Needless to say, if I can't work I can't afford my incredibly expensive health insurance! My pulmonologist is aware of my history and considered that when prescribing meds, and I will follow up regularly with my audiologist and ophthalmologist. Has anyone on the forum had issues with these specific side effects?

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@kanaazpereira

Welcome to Connect, @tfritschy; we're so glad you've joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

Jump to this post

Hello Teresa and fellow Patients of Respiratory Disease. I agree this site is a great gift from those who share our Journey.
Thanks to Mayo. I ask members to be patient in receiving my posts as I am a 64 years young Widow who is self taught
in the Computer Tecnology world. My young grandchildren know more. Hahaha
I would also like to draw attention to the many Medical terms often used by those on this site. Appreciatively and
understandably, knowledge of our personal Disease can be reflective in the language skills that come from our
Medical Team who introduce us to them respective of our Disease. In being careful to not paint all with the same
brush, I find myself having to do research to define some medical lingo written by informed patients. I guess what
I am respectfully asking is that we keep that in mind as we communicate with each other.
Thank you,
Judy
@DavisEyes2017
Unsure as to how I can send to a group, to all who have reached out to me will you forward this
to fellow Members Teresa?

REPLY
@kanaazpereira

Welcome to Connect, @tfritschy; we're so glad you've joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

Jump to this post

Hello Teresa,

I am new to this blog as well. I have not had this side effect after almost 1 year. I am on 3 antibiotics daily and go for an eye exam every 6-8 weeks as well as a blood draw for liver function. I am just now finding out that it may effect my hearing. My doctor or pharmacist never mentioned about hearing loss. This is something I will check into.

Thanks,
Kate

Kate

REPLY

Jamie, I was diagnosed ten years ago by CT. My main complaint was cough. I have always had respiratory illnesses starting at age 12 with a bout with Pneumonia, and continuing with perhaps 10 or more Pneumonias since that time along with maybe 25 or 30 bronchial infections and then asthma in the last 10 years.
After being diagnosed with Bronchiectasis (BX) in 2007 I continued with really only a cough and a few respiratory infections. There was not any dramatic reduction in energy and my asthma was under control. i continued to work until 3 years ago and only stopped to begin to do other things like travel and acting and writing.
This all changed a little over two years ago after coming off of the Pacific Crest Trail in California walking up and down 4000 ft mountains in 105 degree heat and feeling perfectly more or less fine.
A month or so after coming off the trail I began to feel unhealthy with increased cough, sinus drainage, increase phlegm production, but most of all an marked decrease in my energy levels.
I saw a several doctors where I receive my medical care but they were sort of baffled until I saw the doctor who diagnosed me with BX. She did another CT scan of my chest and found what seemed to be a slight increase of the damaged in my lungs but maybe not enough to explain my fatigue.
I was an RN for 30 years so did a little more investigation on my own like being checked for "Vally Fever" which causes symptoms of fatigue and is prevalent in the area I was hiking on the PCT. But I didn't have Valley Fever.
After seeing an ENT doctor I did have a sinus surgery that cleared my sinuses of some areas of infection he said. But again no decrease in my fatigue.
I have found a very good support group at the "Patient" web site for information like diet and exercise and of course personal support.
Since I was in and out of medicine clinic about every 4 to 6 weeks for antibiotics and steroids I decided to try using Azithromycin 250 mg MWF and that has helped with a considerable decrease in infections. I have had one infection since staring the AZ nine months ago but tested for Pseudomonas in my sputum.

I do have a concern with taking the Azithromycin long term as was pointed out by one of the members on our site, for example.
I would like to ask if going to Mayo Clinic in Rochester might be of big help for me, perhaps doing some other regime of antibiotics to decrease the number of infections as has been pointed out. My Pulmonologist here in New Orleans is not familiar with any uses of long term antibiotics and am seeing an infection disease doctor for the AZ.
Russ

REPLY
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