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Do Bronchiectasis and MAC go together?
MAC & Bronchiectasis | Last Active: May 8, 2021 | Replies (66)Comment receiving replies
This is my first post, although I have been lurking for a while. I was diagnosed with bronchiectasis several months ago after many years of symptoms of coughing and respiratory infections (fortunately not all that frequent or severe but still a concern). About two years ago I started asking my asthma/allergy doctor why my breathing was getting worse, but he didn't have any answers. First lesson learned: be persistent and be your own advocate. Finally last year I asked my PCP for a referral to a pulmonologist. I now feel as though I am in good hands with my pulmonologist here in Rhode Island. A CT scan confirmed his preliminary diagnosis of bronchiectasis, which I had never even heard of. Had I known that my airways were sustaining permanent damage every time I contracted what I thought was bronchitis, I certainly would have pursued seeing a pulmonologist sooner.
In early May I submitted three sputum samples. I knew from reading on this site that I would need to wait six weeks for the results, so I didn't follow up, even though every day in May I was progressively coughing more, feeling more fatigued, etc. I had an appointment with the pulmonologist for early June so thought I would stick it out. Wrong! When I finally felt too sick to function, I called the doctor only to find out that the quick test (smear) showed that I had staphylococcus in my lungs. This test result had been available only a few days after I dropped off the sample but I didn't know until three weeks later. Second lesson learned: follow up; don't wait for a call from the doctor. Now that I registered on the local hospital network online portal, I will be notified whenever a test result is available. Fortunately the staph was taken care of with a 7-day course of Moxifloxicin. Third lesson learned: recognize an exacerbation early.
While waiting six weeks for the results of the AFB to see whether I had MAC, I spent lots of time reading the posts on this forum and watching the videos from National Jewish and Georgetown. Even though my doctor takes time with me, it has been so helpful to know the terminology, typical treatment, etc. Fourth lesson learned: be an educated patient. I would like to thank @katemn, @windwalker, @Paula_MAC2007 and others who have helped make me an informed patient.
This Wednesday I learned that I do not have MAC, for which I am grateful. I am impressed by the dedication and tenacity of those of you with MAC who are following strict regimens of antibiotics, nebulizers, etc. At this point my treatment is comprised of Mucinex (generic), Albuterol, another inhaler and an Aerobika, with antibiotics only if I have an exacerbation.
Thanks for letting me ramble!
Replies to "This is my first post, although I have been lurking for a while. I was diagnosed..."
@peggyri Hello
Peggy! Welcome, we are glad that you joined in! We love hearing about
other people's experiences when dealing with our disease. When we
share our stories, it gives us comfort that we are not alone in our
fight. When we share information, we learn, and it empowers us. I have seen
people come on this forum in total terror; and then turn into confident
warriors. I say 'Warriors' because it takes a lot of fortitude and diligence to
keep our disease at bay. New treatments and drugs are coming soon, and this is a
good place to stay current. I hope you will continue to contribute to our
conversations. We like hearing from folks. Hugs - Terri M.
@peggyri Peggy,
are they testing your sputem for MAC and Pseudomonas? Please keep us posted when
you get your results.
Katherine @katemn,
Thank you for the info about the saline treatment, which I'll pursue with my doctor at my next visit. Anything that can be done proactively to keep the nasty bugs at bay.
@windwalker, the test results indicated neither MAC nor pseudomonas.
Peggy
@peggyri, Peggy, after I posted I was thinking .. a really good resource for you could be the below .. hope you find it helpful! I especially would subscribe to the Newsletter! Hugs to you! Katherine
From My File Cabinet:
BRONCHIETASIS-SYMPTOMS OF Symptoms of bronchiectasis http://www.nhs.uk/Conditions/Bronchiectasis/Pages/Symptoms.aspx The most common symptom of bronchiectasis is a persistent cough that brings up a large amount of phlegm on a daily basis. The phlegm can be clear, pale yellow or yellow-greenish in colour. Other people may only occasionally cough up small amounts of phlegm, or none at all. Other symptoms may include: shortness of breath wheezing coughing up blood or blood-stained phlegm chest pain joint pain clubbing of the fingertips – the tissue beneath the nail thickens and the fingertips become rounded and bulbous Signs of a lung infection If you develop a lung infection, your symptoms usually get worse within a few days. This is known as an infective exacerbation and it can cause: coughing up even more phlegm, which may be more green than usual or smell unpleasant worsening shortness of breath You may also: feel very tired cough up blood, if you haven't already done so experience a sharp chest pain that's made worse when breathing (pleurisy) feel generally unwell When to seek medical advice If you haven't previously been diagnosed with bronchiectasis and you develop a persistent cough, visit your GP for advice. While persistent coughing may not necessarily be the result of bronchiectasis, it requires further investigation. If you've been previously diagnosed with bronchiectasis and you begin to experience symptoms that suggest you have a lung infection, contact your GP. You'll usually need treatment with antibiotics. Some people with bronchiectasis are given a stock of antibiotics as a precaution, in case they suddenly develop a lung infection. When to seek immediate medical advice Note Some people with bronchiectasis develop a severe lung infection that may need to be treated in hospital. Signs and symptoms of serious lung infection include: a bluish tinge to the skin and lips (cyanosis) confusion a high temperature of (100.4F) or above rapid breathing (more than 25 breaths a minute) severe chest pain that makes it too painful to cough and clear your lungs If you experience any of the above, phone the healthcare professional in charge of your care immediately. This may be your GP, a doctor who specializes in lung conditions (pulmonologist) or a specialist nurse.
BRONCHIETASIS-BREATHING VIDEO WONDERFUL INFO FROM M.D. Dr. William Girard of University of Texas Health
BRONCHIETASIS
explains blood/bleeding https://www.youtube.com/watch?v=YeomndWSom8
BRONCHIECTASIS-BLOOD/BLEEDING From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe) then go to a hospital with intervention radiology. They can stop the bleeding by ‘plugging’ the blood vessel. Just wanted to pass that on. Jan **NOTE: : for those of us with Bronchiectasis .. might it be a wise precautionary measure to at least call our closest ER .. ASK if they have an interventional radiologist? Otherwise when we get there we are out of luck! (Interventional radiology is a medical sub-specialty of radiology utilizing minimally-invasive image-guided procedures to diagnose and treat diseases in nearly every organ system.) From chinasmom, Becky .. I believe that intervention radiology can be used for stopping the bleeding in our lungs. I’ve had a needle biopsy on my breast useing intervention radiology. My pain management uses it when he’s given me epidural injections, a spinal cord stimulator trial and a morphine pump trial, and radiofrequency abliteration on my back and neck. So it has many uses.
* @Paula_MAC2007 Paula RE: Bronchiectasis -- I subscribe to "Bronchiectasis News Today". Lots of good info. Main site: https://bronchiectasisnewstoday.com/
SUBSCRIBE: https://bronchiectasisnewstoday.com/2017/01/05/antigen-presenting-cells-may-contribute-inflammation/
You can easily get past issues of the Weekly Digest: http://us5.campaign-archive2.com/home/?u=52c64784d386bd00ea57ee792&id=d9df0e1c03
@katemn Katherine, your file cabinet is a gold mine! My case is so textbook from that description (except I don't experience hemoptysis).
I've been following Bronchiectasis News Today on Twitter - @bronchiectasis_ 😉
There are some great resources from the UK as well as Australia. In case anyone hasn't seen these:
https://www.chss.org.uk/documents/2013/08/c4_bronchiectasis-pdf.pdf (Good overall explanation)
http://bronchiectasis.com.au/ (There's a lot under "Resources")
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@peggyri, is your first name Peggy? Peggy SO glad you do not have MAC .. BUT it sounds like you have done such a great job of educating yourself .. doing your "Due Diligence" .. being your own Best Advocate .. BUT Forewarned is Forearmed .. Read what @windwalker Terri just posted about doing 2x a day inhaled saline. Be sure to educate yourself further about how Bronchiectasis mucus becomes a breeding ground for various types of bacteria. I say this NOT to frighten you .. merely so you will NEVER deal with what so many of us on this Forum have dealt with. With proper care you may ALWAYS stay with just Bronchiectasis! So happy for you! Hugs to you! Katherine
From my File Cabinet:
SALINE NEBULIZED TREATMENTS Member @windwalker Terri: Told my Dr that the saline treatment wasn't bringing anything up. It is because my lungs are crystal clear at the moment. He said it is STILL important to continue the saline inhalation anyway. WHY? Because it acts as a preventative, it thins the mucous. When the mucous is thin, there is less thick, sticky stuff for the MAC and other bugs to breed in. From @windwalker Terri .. First, I use my Inhaler, (to OPEN my lungs, then I use the saline to cleanse out the lungs. The saline moistens your lungs to help thin out the mucous, making it easier to cough up. Plus, it irritates the lungs a little to make you cough, it also makes for a salty environment which germs do not like to set up house in.