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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!
I am answering you on our main discussion page:
– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.
I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine
Replies to "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..."
I am so thankful to find this group, been rather scared. I have been reading the pages here for a week, still learning a lot. I have lots of questions, will ask about them one at a time. What are bronch washings, ordered by pulm or ID physician, done where? Thank you, thank you. - Barb
Thank you, Terri! (and again thank you, Katherine) !
Hi Barb, the bronch washings are done by a procedure called a
'bronchioscope'. You will be sedated, hopefully with a twilight anesthesia, a
tube inserted down your throat and into your lungs. The Dr will squirt a small
amount of saline into the lungs. They remove the liquid and send it to a
lab. The liquid they bring up from your lungs contains all kinds of info. They
will lab test it for various organisms, inflammation cells, and other abnormal
things. They may snip a tiny piece of your lung while down there to biopsy it.
They did mine that way. I would FIRST ASK WHY they find this method necessary
over getting a good sputum culture. My Dr. at the Mayo said that the
bronchioscope precedure I had done somewhere else was totally uneccessary. So,
always ask WHY they are choosing that route. I am sure there are
instances where that kind of diagnostic tool is neccessary.
@windwalker I appreciate the proactive approach you use by asking "why" - that is great. A good lesson for us all who deal with doctors on a regular basis. Thanks for that input. Teresa
Thank you!
I had two bronchoscopes in January/February -- had Strain A flu which went into double pneumonia (24 days in hospital) and then another hospital stay with pneumonas (sp?) along with respiratory failure - I wonder if my pulm doc just did the bronch. I will ask. I try to remember to ask why but why not is always good to ask too!
Next question -- Why space the 3 anitibiotics out? I asked my ID physician yesterday if I should be spacing them and he said, no. I have been taking them Monday morning after breakfast, Wednesday after lunch and Friday after supper.
Thank you - -Barb S
@bschaper2, Barb, IF you have had zero side effects so far taking al 3 at once.. OK .. BUT for me .. with my history to drug sensitivity .. I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it! YOU make your own decision on this .. NOT the doctor .. it is YOUR body .. YOUR life! Good luck! Hugs to all! Katherie
Hi, Katherine and all here - I have had no problem with taking the 3 drugs for the last 90 days but have had problem with some drugs in the past, so it really makes sense what you say, thank you. With reading all your information here, I have ordered the mask, the sterilizer, and the bags for the microwave from Amazon and they are being shipped. Do you ever use your nebulizer or Aerobik mouth pieces more than once? I also do the Airlife spirometer with the Aerobik 3 times a day which I hope is enough -- now taking mouth pieces off both and cleaning. I will be replacing my hot water heater which is about 20 years old next week and I did get a new refrigerator 2 weeks ago so I assume that it doesn't have MAC growing in it yet. This site is great, the people here are so supportive. Thanks - Barb
I just read that drinking water from filtered water from refrigerator is not recommended. It has something to do with the warmth created by the machinery in the unit needed to filter the water; the critters thrive in that environment. I started to drink spring water-- not sure that is the answer. I am rinsing the aerobika and nebulizer in distilled water after soaking in regular warm sudsy regular water. Wondering if that (using distilled water to rinse) is necessary. Would appreciate others' thoughts. Thanks to Katherine I, too, have the mask, the sterilizer, and the bags. Katherine: you could have a new career -- advisor to anyone with MAC. You would eventually have all persons with MAC world-wide. Terry
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@tfritschy, @lindaaz, and @afcardieri , welcome to our Connect Community! Please feel
free to ask questions and share your experiences. This is a great support forum
with many caring individuals. - Terri M.