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

Thank you very much for your reply Christa,
It's very heartwarming and also comforting to be in touch with people who understand
What I am going through. I will read a lot of the material and educate myself about this new health challenge that I am facing. Thank you for your explanation about Hemoptsis, luckily I only had that for a short time and this problem has not showed up again.
All I can say to you is that now that I found this wonderful group I am here to stay.
Thank you for my first response Christa!

Hugs, Andree

Dear Katherine,
Thank you for your wonderful response and welcome. I must tell you that your site with all your knowledge has brought my panic level way down. To hear that there are so many people and mostly women who have the symptoms and that I can identify with all of you gives so much more security.

You have given me a wealth of information and I really appreciate the Dr's explanation of what Bronchiectasis is all about.
You will get a laugh with this...I did , my new Respiratory Specialist is trying to push one inhaler product over another that was given to me ny new GP . I know for sure that he must be getting something from this company, also I requested a lung Physiothrapist in order to help me produce some mucus for lab testing, well his secretary sent me to a "Sports Phisiotherary clinic which is situated on the first floor of their office building.
I went there and the receptionist had no idea what I was asking for!,

I also asked for the Alpha 1 blood test and while I was at the lab, I asked them if they knew about a lung therapist. The girl sent me to an office a few doors away that does physiotherapy and they have a contact for what kind of therapist that I am looking for.

I also asked for a community respiratory program that is available in my area. I have an appointment tomorrow morning and will keep you posted if you are interested.

One more thing, I have made the decision to move from the Pacific Northwest back to Montreal which is my hometown. It may sound weird because the winters are snowy and cold back there but it is a lot drier than Vancouver where the humidity in the winter penetrates the buildings and besides the lungs promblems it brings on ,there is also the arthritis which becomes much worse.

I also plan to spend the winter months down south ,most probably Florida. I imagine that this will help to.

Many hugs to you Katherine,

Andree

@mariposa, Andree .. you go Girl! Didn't I tell you "Knowledge is Power"! You read the back pages AND stick with us .. AND frankly .. you will probably end up knowing MORE than MANY doctors and respiratory therapists know! Why? Because we have such a wonderful community of caring people that come back when they learn new things and share their knowledge .. PLUS then pass on to Newcomers .. EVEN if they are just ONE STEP ahead of them on their journey! Why? Because we have ALL learned that "giving back" is all a part of our own healing process! I am so happy for you. Just keep learning .. and trusting your inner wisdom! Hugs! Katherine

@mariposa .. Andree and @unicorn, Christa, I don't want to take you back to a dark place .. JUST want to tell you just HOW VERY proud I am of you!! You are SUCH an example of our Community of caring loving Members who come to our Forum just terrified .. take the time to read the back pages .. understand that TRULY "Knowledge IS Power" .. then DOES become their own best Advocate .. THEN makes a HUGE effort to "PLAY it forward" give back by helping our other Members .. ESPECIALLY watching for Newcomers! Christa, I really want to thank you for being YOU .. AND being such a valuable member of our Community! A Big Hug to you! Katherine
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(remember back to your posting on June 10 .. I went back BECAUSE I remembered how scared you were .. you posted "My name is Christa, I have a child’s glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear.")

@mariposa Andree, I get the below newsletter (National Jewish Health <info@njhealth.org>) and it made me think of you .. thought I'd add it to our Forum .. thought it was interesting .. MANY of us with Bronchiectasis were FIRST inaccurately diagnosed with asthma .. so I googled "DO WEATHER PATTERNS AFFECT BRONCHIECTASIS AND ASTHMA THE SAME" .. got "Types of obstructive lung disease include; asthma, bronchiectasis" .. so it confirmed my suspicion that both are affected by the same weather! So the below is interesting to see the geographic effects on our health! Hugs! Katherine
https://www.nationaljewish.org/health-insights/health-infographics/best-and-worst-cities-for-asthma

Thanks Katherine xoxo

@auntnanny, Jan, give yourself a break .. this is a LOT to digest .. you don't need to understand it all at once .. remember the saying "How to you eat an elephant? One bite at a time!" That is how you will learn about all this information! "One bite at a time"! Just give yourself permission to be wherever you are on THIS journey .. wherever you are is JUST FINE. Take your time .. we will be here to walk the walk with you! Hugs to you! Katherine

@auntnanny, Jan, I CANNOT advise you what to do .. I can only tell you what I did in your situation. I did my "Due Diligence" .. went to Mayo Clinic, Rochester website and researched UNTIL I found a doctor who's medical bio indicated an INTEREST in MY diseases: MAC/MAI AND Bronchiectasis. Because my beloved Dr. Timothy Aksamit has become internationally famous and travels all over the world speaking to educate about our shared disease .. I researched and FOUND that he worked as a "team" with the Pulmonary Department. YOU can choose to call 507-284-4348 .. request an appointment with Dr. Aksamit's Pulmonary Team.

If you check Dr. Moua bio at http://www.mayoclinic.org/biographies/moua-teng-m-d/bio-20055546, you will find his "Conditions Treated" and "interests" stated is " Interstitial Lung Disease" ( http://www.uchospitals.edu/specialties/pulmonary/interstitial-lung/faq.html ) Frankly that would not suit me .. nice though he is. Just me and my opinion.

Jan, to make sense of your situation .. I had to go back on your posts .. this is what I came up with:
a. Diagnosed with Bronchiectasis 3 years ago at Mayo
b. MAC bacteria in sputum testing done at Mayo .. none for over a year .. no treatment
c. doing many sputum tests and sending results to Mayo
d. if begin coughing again .. sputum test to determine which bacteria is causing the problem. For a while it would be MRSA .. then maybe MSSA .. or pseudomonas and each would require a different antibiotic
e. I am usually free of coughing for 3-5 weeks after 10 days/2 wks of a selected antibiotic. Then, it’s all to do over again.
f. My last four sputum tests have come back negative — which I don’t understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm.

My opinion ONLY:
1. call 507-284-4348 as I stated above .. they have all your records .. tell them you are VERY ill and need an appt ASAP!! "Fake until you make it if necessary! You have been fed so many antibiotics over such a long period of time who KNOWS what is going on with your body!)
2. Pseudomonas is a SERIOUS bacteria that DOES not CURE!! It is a nasty green mucus and NEEDS TO BE treated! Because I am currently dealing with Pseudomonas I have done a lot of research .. not to frighten you but to make sure you take action .. a mere bit of which is: The bacterium appears to have an inbuilt resistance to antibiotics, as well as the ability to mutate into new, even more resistant forms. It is difficult to treat people with Pseudomonas infections. The bacteria have long been notorious for their resistance to antibiotics. More recently, scientists have discovered that individual Pseudomonas bacteria differ considerably from one another, meaning we are not necessarily fighting a single foe. The bacteria's genetic make-up differs, as does their virulence - their ability to cause disease. Some strains seem particularly good at spreading from one person to another, resisting antibiotics, surviving in the environment, or even causing death. They are also constantly evolving. In this project, researchers are studying the genetic differences between a wide spectrum of different Pseudomonas aeruginosa bacteria. They are identifying and sequencing sets of genes that enable the bacteria to cause serious infections in man, and studying the role of these genes. They aim to emphasise the enormous genetic diversity between different Pseudomonas bacteria by studying strains collected. https://www.action.org.uk/our-research/secrets-superbug-what-makes-pseudomonas-bacteria-so-deadly
3. use the Mayo Clinic Portal to start MONTHLY requesting they; Please mail me a copy of my Sputum Culture Report to include both Mycobacterium and Bacteria

Jan, I hope you find the above helpful .. it is ONLY what I would do in your shoes .. BUT YOU must trust your own best instincts! It is YOUR body and YOUR life .. ONLY you can make your own decisions on what is best for you. We will all honor what you feel is best for you and be here every step of the way whatever pathway you decide! Hugs to you! Katherine

@ling123, Ling, great advice to a Newcomer .. thank you! Hugs! Katherine

Thank you so much for the time you spend helping to educate. Yes, I do know that the pulmonologists at Mayo's work as a team. Dr. Moua confers with his colleagues often. I have no idea if he is on the same team as the wonderful doctor you have. May or may not. There was very little Mac showed in the initial testing and he and his group made the decision to monitor it. It hasn't shown up since that time; however, I realize it might at any given date. He told me about the 18-month/2-year program of treatment if and when it happens. But, so far, I think I've been blessed. I worry too much (I know I do that)...... but he did tell me it is chronic and not curable. I asked if I would die from it and he smiled and said "You will die with it but hopefully not from it". Is there a way to learn which others work in the same group. I do know Dr. Moua is oftentimes out for the day -- or night -- and is in the hospital working. He is very good to respond by email or by phone to me from the portal. I have his cell pho number and of course I can call his nurse and there are other members of his team who will fill in immediately and prescribe for me. That said....... it's still a very scary feeling when I'm desperately coughing. I did it for years before being diagnosed with anything more than asthma (which I knew was wrong)...... but I don't seem to have any patience these days when the coughing fires up again. I wonder if I should expect longer bouts between flares. I have no answers as to whether others are able to be free of the problem for months -- or just weeks as I am.