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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up - lovely subject! - I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela
@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.
I saw that actually Steve was adding Albuterol to his nebulizer ... which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.
I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful "flutter" I had to turn the "+" sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max "+" setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine
Replies to "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..."
Hi Steve - I personally have not have serious side affects with the meds, but some people really struggle in the beginning - it gets better with time. There are a lot of posts to do with how best to take the meds to avoid problems and supplements to also take which help. I will be done with my 18 months of meds the end of April and after that will have to have the sputum tested. I came down with pseudemonas after being 2 months in on the MAC meds and that really brought on a very bad and productive cough - once I got on the antibiotic for that, the bad cough went away, as did the pseudemonas. Pamela
@maryjo2sell, Mary Jo, thank you SO much for your reply. I just had a gut feeling about that Ebay product .. you know the old saying "you get what you pay for"! I just didn't feel right to have to go to the MAX setting. I thank you for your response! We now have GOOD info for our Forum .. buy from AEROBICA directly from: https://www.monaghanmed.com/Aerobika !!
Mary Jo, PLEASE do keep us posted on your Mayo news .. hmmm what will be .. will be right?! Sending you a hug! Katherine
I feel badly that your Aerobika may not be working properly since I suggested ebay. Mary jo
thank you Pam, IF I do have MAC I guess I'd just as soon deal with what comes with the meds than cough like I do.
@maryjo2sell, Mary Jo .. you just LET GO Girl!! I am a big girl and made a choice .. I own my own choices!! However .. it will be interesting .. I ordered an Aerobika from a medical supply company .. it will be interesting to see the difference .. what # I use on the new one. I will let you know! But truthfully I have been satisfied with my previous purchase .. with it I have been able to get up more sputum .. after doing my best by myself .. always get a bit more then using that Aerobika .. so I feel it paid for itself already! Hugs! Katherine
@david1952, David, I don't have a clue if this product would be better or worse for you .. I used it daily for 30 months for my inhaled antibiotic Amikacin plus saline. I had a whole system worked out if you are at all interested .. using a tube and mouth piece .. just watched tv as I did it .. boring as all heck but it killed the nasties! Hugs! Katherie
http://justnebulizers.com/pari-vios-nebulizer.html
Somone has upset you deeply and you shouldnt have to feel this way. You know, and everyone else does too, that you are doing a fantastic service. So don't let someone else take your mind away from this. Don't let them steal your joy!
You are loved and appreciated.
Becky
@chinasmom, Becky, you are dear and it does my heart good to read this .. but I was wrong to allow my fatigue to misdirect a private email to what I consider my sacred Mayo Connect space .. and I do apologize again for that. But thank you for your very kind words .. this Mayo Connect is a sacred space for me .. and I truly do try to do my very best for all of you .. and trust me I get back SO much more than I ever give to you. With big hugs and tears in my eyes .. to everyone! Katherine
<br><br><br><br><br>Steve, ask your dr about tobramycin. It is expensive, but there are <br>charities that help pay for it. The specialized Walgreen's pharmacy has a list <br>of those charities. Treatment with 'Toby' is ONE drug, nebulized straight into <br>the lungs, no harsh side-effects. Best of luck on whatever you choose. Terri <br>M.<br> <br><br>
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MaryJo, I am happy to read your experience is the same as mine has been at the Mayo in Jacksonville's pulmonary dept. Sending positive thoughts your bronchoscopy goes well. I have had three of these since I started this journey in 2015.