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

<br><br><br><br><br><br>how did you get it through security?  I will still buy it!<br><br><br> <br><br>

@pamelasc1, Pam, I feel strongly this is a question for your Pulmonologist .. BECAUSE even when you are 'stable' .. off the antibiotic treatment .. the mycobacterium is STILL in your lungs .. just not growing/colonizing. ALSO you can STILL get ANOTHER mycobacterium OTHER THAN what you presently have! When I was first diagnosed I refused treatment because I did not have access to the wisdom .. education .. support of a Forum such as thing .. thus I delayed treatment UNTIL I was diagnosed with a SECOND SERIOUS ABCESSUSS type of mycobacterium that was even more difficult to treat!

So, Pam .. just based on my personal experience .. it scares me to death that you might even take a chance on a hot tub at a later date without consultation with your Pulmonologist. This MAC is nothing to be messed with. Personally I found a Back Clinic in my city that taught me various back exercises that strengthened my back and core muscles to the point that IF I do them regularly .. using the back machine they recommended (you need training on it!) .. I can keep the back pain within reason. I do NOT know your back issues .. but I just hope you seek out whatever help you need! Hugs to you! Katherine

WITH PROPER TRAINING:
This is the machine I use .. no longer on Amazon .. but gives you an idea and reviews: Stamina Ab / Hyper Bench
http://www.staminaproducts.com/product_detail.cfm?cat=Strength&pid=20-2021

@pamelasc1 Pam, we have 'Trusted Traveler/Global Entry' status .. but even so I think if you just put it in your carry on .. no problem. I always carry an extra battery in a little velvet bag. Actually I also have one in my purse for theatre .. autos .. restaurants .. as well as an extra for travel! Can't be without one! Hugs! Katherine

I too have lower back pain since being diagnosed with MAC/bronchiectasis. I initially thought all the coughing might have triggered it. Now I am on the triple 3 and don't cough much but still have lower back pain. I thought maybe the pressure of the Vest on my back might be causing it. I have an InCourage Machine and spoke to the technical team and they said they have not had a similar concern but suggested I reduce the vibrational frequency and decrease the time spent on the machine from 30 to 20 minutes. Yet, that is not sufficient to help clear out my lungs.. ..

I am not sure though that the back pain has anything to do with the VEST. If anybody has had similar problems and could offer some advice I would appreciate it.

I had it in my purse and put it on once I was seated in the airport waiting to board. No one ever questioned it.

Very happy to see others questioning the use of hot tobs. My pulmonologist told me (well my ten year old stepson) it was ok for us to go swimming a bit. Not the ocean but the pool where i know the chemicals are right. Fortynately i have access to a resort where ill be able to go again soon. But with your reply ill make sure to discuss it again given i didnt mention to lung surgeon and skin issues. Better to be safe.

I sure hope they say ok it makes ne feel so much better.

..ONLY on the airplane will you be questioned. Katherine

Everyone one has been very honest and caring about their advice in NOT using my hot tub... unless I know I can wear a high quality vapor mask AND get an ok from my doctor, I will avoid it.  Thank you so much, Pam  

@jewel8888, would LOVE it if you share with us the information your doctor gives you re the hot tubs. The more info we share the better .. that is what our community is all about! Hugs! Katherine

Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it's small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it's really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.