(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Dear All, am I the only one who HATES to shop .. hates to know what they want to buy but cannot find.. hates to go to 4 different stores and STILL can't find what they want .. feel guilty not to buy locally BUT LOVE just finally giving up and in minutes finding it on Amazon Prime? Well if you are in my category .. today as I made my final purchase .. I saw all these notes that I thought I'd share. I have donated to NTM as my charity for a long time .. every little bit helps .. especially if everyone on our Forum added NTM to their Amazon accounts? Just a thought! Hugs to all! Katherine

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Boomer, I read the same thing .. those of us with Bronchiectasis absolutely should be subscribing to: Receive our FREE Weekly Newsletter. I totally agree and sent the below email to Dr. Aksamit at Mayo Clinic .. if/when he answers I will share his answer .. because PART of the article says: The next step is to do longer-term studies to investigate whether an earlier intervention, with slightly less aggressive therapies, could help prevent disease progression in patients.” That MATTERS to me since I have now been diagnosed with three bacteria including Pseudomonas aeruginosa bacterium. Hugs! Katherine

Dr. Aksamit, Obviously I am very concerned about this new issue of Pseudomonas aeruginosa bacterium .. just battling with MAC .. now fighting Bronchiectasis! I read the below article re: Removing Antibodies from Bloodstream May Reduce Chronic Lung Infections in Bronchiectasis .. and wondered if Mayo Clinic is working on this? If it is a current option for me? Thanks for your help! Katherine Fink #
https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/

Wow thats fantastic. Hope they speed up the process and get it into use soon.Thanks @boomerexpert

It is...but issue is US doing such research, not UK speeding it up...we must get this info in front of our docs and ask them to push for such research here.

Dr. Adam Anderson M>D. Assistant Prof of Medicine, Division of Pulmonary and Critical Care Medicine at Washington University in St. Louis School of Medicine is my MAI Dr. His phone is 314 454 8763 and address is 4523 Clayton Ave. St. Louis, Mo. 63110. To schedule an appointment use 314 454 38917. His nurse is Anna Ellis at 314 273 1457. I was just diagnosed in Jan and been on the 3 meds since Jan 20th 2017. Also, Dr. Anderson ordered me a Smart Vest which I believe has helped a lot. Go back to him on April 28th to start all the routine testing MAI patients get. Will post what all he orders after I see him. If he doesn't order vision/hearing etc I will be asking him for them. Know he's doing kidney and liver as he told me that.

BEcky33....all your drs sound good....did they also do a CAT scan?? what did it show if they did one? Two more questions:
1.do you cough less in texas where I assume it is dry?
2.do you have Gerd and Sleep Apnea? Terrid

MAC no cough. I am also at Mayo with Dr Aksamit, after being at NJ Denver. He is very kind and understanding. No frightning prognosis.

@boomer , thanks for looking out for all of us. There is great information in " Bronchiectasis News Today". Spent alot of time there yesterday because I am always looking for something i can give my family so they can try to have some understanding of what we are going through. They have a search engine where you can put in topics and it will bring up articles about your topic. They highlight words and topics that will link you to more information and they have a print option so, my printer was humming yesterday. They also suggest articles at the bottom of the page and I found one yesterday about a doctor describing chronic illness. I highly recommend it. That artcle has a link to that doctors blog with very lighthearted and funny stories. Everyone should check it out. Thanks for the link and for all you do.
Becky

@katemn , I found such great information at Bronchiectasis News Today. I printed a lot of articles about our disease to give to family and friends. I saw an article at the bottom about a doctors view of chronic illness , its a must read for everyone she has a link to her blog about all chronic diseases. Thanks for advocating for us and for doing all you do.
Becky

Yes, they did a CAT scan. It showed TBM which dr said is caused by chronic inflammation. That is why he ordered the Smart Vest as now it breaks up the congestion more and I can more easily cough it up. Before every time I coughed my trachea was closing which it still is but now the mucus is smaller and does come up. No, I don't cough less in Tx. I coughed every where all day and night!!!! I was on antibiotics and steroids 19 times from Dec 2015 to Dec 2016. When I would be on the meds I could function but within a wk off the meds and I would be completely down and out I would be so congested. Dr. gave me a sleep apnea test but it showed I do not have sleep apnea. . I had silent acid reflux for yrs and yrs and didn't know it so was on steroids and antibiotics off and on for at least 15 yrs. So many steroids that my veins are shot. Have to use a picc line when I'm in the hospital. I was aspirating every time I ate but didn't realize it and neither did the dr's. Because my lungs were always infected drs always thought I had asthma/COPD and that is what they were treating me for. Finally a dr ordered a barium swallow, during the test the dr said "you need surgery and you need surgery right now". He said the moment the food hit my stomach it was coming back up into my throat. That's why I got the chronic inflammation in my trachea. During the testings that had to be done before a Nissen Fundiplication surgery could be done to correct the acid reflux, it was also discovered I had a mass on my kidney. Kidney dr would not touch me before my stomach was fixed as he said I would have aspirated on the table. Nissen Fundiplication surgery was done in July 2015 and kidney removal was done in Nov. In March 2016 I also had my gall bladder out. So my immune system was very low at this time as I had 3 major surgeries in 7 mo's. When the coughing started up again I thought the Nissen Fundiplication hadn't worked so went back to surgeon who ran a series of tests and said there was no way the coughing was caused by acid reflux. My stomach was fixed and I would never even be able to throw up again. He sent me to heart dr who did another series of tests and said yes, you are 73 yrs old and have some heart problems but nothing serious enough to cause the amount of coughing you are doing so sent me back to pulmonologist who sent me to infectious dr who did a series of infusions every 8 hrs for 2 wks and when that didn't work he sent me to Dr. Adam Anderson at Washington University in St. Louis, Mo. who finally did the proper sputum cultures and discovered I have MAI. I had so many things wrong with me that the drs could not pen point exactly what was wrong. Each problem had to be weeded out, corrected and then onto the next problem. With the MAI meds and the Smart Vest I am now breathing better than I have in 10 yrs. I call it a "miracle" because I can breathe in deeply and blow out and not cough. BUT as all of you know, the side effects of the meds are not all that pleasant. I have hot flashes that sometimes are almost unbearable, I have nausea the 3 days a wk I take the meds, my muscles and joints ache all the time and I am extremely tired and sometimes have to take 2 naps a day to keep going BUT I am breathing!!!!!! I can walk 2 miles at a time, I can dance and I feel better than I have in yrs in spite of all the aches and pains. Now I can only hope and pray that when I start the testing on my kidneys and liver that God will be good to me and let the meds work and not hurt my body any more than it is already hurting.