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@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

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Replies to "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..."

Katherine, Is this really the first time you have seen them? I have been advocating for people to watch them for at least 6 months. They are the best information out there to date and its free education. We all need to see this. I've seen 2 year's worth 2015 and 2016. I started to re -watch all of them so i can start , stop, and take notes. Im glad you have found them. Make sure you watch them all. Thank you for all you do for connect and glad you are feeling up to it. Stay strong everyone!
Becky

Yes I have both bronchiecstasis and MAC. Hugs back, dear Katherine. Terry

@128128terry11t, Terry, I was JUST researching for myself .. Hope you find it helpful! But I WILL say .. I ignored green sputum .. AND perhaps it was a sign of Pseudomonas?? PER my File Cabinet: Common signs and symptoms of pseudomonas include shortness of breath, fever, chills, increased heart rate, decrease appetite, malaise, systemic inflammatory response, productive cough, increase sputum production that may have a yellow-green pigment, is thick, and usually foul smelling. Really do not know .. if I was sitting in your shoes I would request that it be checked out! Bronchiectasis OR Pseudomonas. Hugs! Katherine

Also from my File Cabinet on Bronchiectasis:
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.

AND https://bronchiectasisnewstoday.com/2017/04/13/nine-common-symptoms-of-bronchiectasis/

Hi Terry, I also have bronchiectasis andMAC. Doc is putting me on 1/2 hour of exercise daily and nebulizer, to get the sputum up. Do you ever cough up blood? Just curious because I do.

   @unicorn 
Hi Crista,  I have coughed up a little blood on two diff occassions. It
wasn't much, but it scared the bejesus out of me. I haven't had it happen in
years, due to the fact that I am on alternating monthly antibiotics. I have
texted you this info in more detail previously. It may have gotten overlooked
because there are so many posts. I had replied to your post about this.
hugs!
 

so sorry Windwalker, I didread your posts.

First coughed up blood several years ago which led me to go to ER. Very very frightening. I was diagnosed by the ER doctor as having pneumonia. I believed that I did not and insisted upon seeing a pulmonologist (our Katherine always advises us to speak up for ourselves). As a result of seeing that specialist I was eventually diagnosed with MAC. Fast forward several years later and I again coughed up blood. I mistakingly called my primary care physician instead of pulmonologist (stupid mistake and I don't know why I did it). He insisted that I go to ER. I did and there I sat in the ER because they admitted me and had no bed. When I arrived at the ER, I told the ER doctor what I had and that I needed a CT scan. He then asked ME "with or without contrast"! I told him "without" and it was then that I realized that I was caught in Wonderland. It's frightening when you know more than the person treating you. After the fact my pulmonologist told me that I that there was no reason to have gone to the ER. The moral of the story is that if you do need to go to an ER because there is a lot of blood and it can't be stopped, make sure that you go to an ER that has an interventional radiologist. Recently, there have been posts cautioning about that need. Sorry for a long answer to your short question. Terry

Thanks for telling your experience with the ER. The first time I coughed up blood, there was a very large amount and I had not yet been diagnosed. They all immediately gowned up thinking I had TB. It was the scariest experience I had every had. Once I was diagnosed and learned that coughing up blood was one of the symptoms of MAC, I saw no need to go to the ER when I had the second episode of coughing up blood. And I was a lot calmer as well. I don't know if the ERs that I have access to per my medical insurance are equipped with interventional radiologists or not. But it is good to have this knowledge so I know to at least inquire if I ever have a bad bleeding that will not stop on its own.

@ling123 .. Ling, IF you also have Bronchiectasis .. it is also a symptom of that .. not to be concerned either! Hugs! Katherine

@128128terry11t Terry, QUESTION: 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! Hmmm! Hugs! Katherine

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.