Welcome @melrosedecosmo. I took the liberty of moving your message to the main discussion on MAC where you'll meet all the "regulars". I encourage you to click VIEW & REPLY in the email notification and read through some of the past posts to get acquainted with the members. @katemn, the group's patient mentor, will get you introduced.

In the meantime, Melrose, why don't you tell us a bit more about yourself?

Hello @melrosedecosmo .. (do you have a first name .. makes it so much more personal! .. by the way you are NOT possibly from Melrose MN by any chance?!) Welcome to our Forum .. so glad you found us! I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Tell us a bit more about YOUR journey .. and please feel free to ask any questions .. OR send us any tips that have helped you along your journey! Sending you a Hug. Katherine

Hi Katherine. My name is Rosie but the system already had a number of Rosies as a username. Nope not from Melrose MN. I currently live in Vero Beach, Fl and getting ready to make a move to Columbia SC. I have read through most of the past posts and found them helpful. I am constantly on the search for new support groups as I find people who are dealing with the same issues help me feel I am not alone! I am a member of inspire and the folks in this forum are wonderful.I have battled with different illnesses throughout my 63 years. Am and always have been a non-smoker and took great care to stay away from second hand smoke. Except for stints of medical issues always kept myself healthy (exercise, ate very well, no sugars, refined starches, etc) So faced with these two diseases is a real challenge as I used to be a very active individual who now gets tired very easily and am working my way back to being able to walk a mile without running out of oxygen.

As I stated in my original post, I was diagnosed with these two diseases in July 2015. Eve my husband and I were scheduled to move to our new home, I got to spend the week in a hospital because I started coughing up a lot of blood. The hospital doctors said I had an unspecified pneumonia, sent me home the first night I went to emergency with an antibiotic. A day later, I was coughing more blood and clots, back to the hospital and this time I was placed in isolation because they thought I had TB. Infused with antibiotics 24/7 then a broncho, culture in the local lab showed nothing. Let out of the hospital in a week, kept getting worse and continued to lose a lot of weight. The sweats were horrible. Decided to be seen at the Mayo Clinic in Jacksonville. In the interim another pneumonia and blood coughing bout, more weight loss. Back to the hospital. Month later, the Mayo conducted another broncho and they grew the MAC and confirmed I had bronchiectasis. I had been battling with acid reflux and stomach issues for years. Another round of antibiotic two months apart. The second round of doxy burned my throat and my esophagus (have a motility issue so I have to take oral suspensions). It has been a nightmare. I landed in emergency three months ago with what seems to be ancillary issues related to the SIBO and fructose intolerance I now battle with due to the rounds of antibiotics I was on. Dr. Leventhal from the Mayo told me NOT to take any antibiotics without checking with him first because of possible future resistance issues. Luckily, I have been pneumonia free for 8 months now, still have the issue with not being able to gain weight (89lbs currently) and the stomach issues. I pretty much live in a cocoon at home, keep my home as germ free as possible, wear masks in public and steam clean my floors weekly. I had to hire a cleaning service to take care of my home because I just didn't have the endurance or strength to do the work myself. My lung capacity has dimensioned based on the PFT tests and legally I qualify for disability (which I am having a difficult time accepting this). Dr. Leventhal told me the antibiotic regime would do me more home than good right now. Since the changes in the MAC growth are small he wants to wait. Prescribed Symbicort but I am one that has NEVER taken medications as the first course. I found I had a gift for research when I worked on my Ph.D. so I have been doing a lot of research on these two diseases trying to find clinical study results. I read that the symbicort and like inhalers haven't yielded positive results for those like me because the cases are based on people with Cystic Fibrosis for the most part. But, it does come with side effects. I decided to wait on the symbicort. I used Xenopex when my lungs get very tight and constricted. I use the Smart vest and my husband also does the percussion cupping on my back. I use some breathing exercises that help open my lungs and have air purifiers in most rooms in my house. I am going to start therapy to increase my lung endurance in a week and see how that goes. Mindfulness exercises and meditation help me not project into the future but stay in the present and be able to get through the bad days when my breathing is quite labored. Changes in the weather seem to trigger these incidents.
I am currently trying to find information on steam cleaning, distilled water, and effect on MAC and Bronchiectasis.
That's a little about me. LOL.

@melrosedecosmo, Hello Rosie, WOW! what you have been through! You are DEFINITELY NOT alone .. you have found a very nice supportive community of people who are all on this MAC journey together .. you are home! SO glad you have found a way to still exercise .. it is SO important to keep our lungs healthy. When I was first really sick I was coughing so much I really damaged my back .. stopped the Nordic Track work out I had been doing since my 30's .. my back hurt too much . Then somehow got out of the routine .. shame on me .. now am REALLY trying to get back on track KNOWING just how important exercise is to our health .. good for you!

Trust your Mayo doctor .. they put together a BIG puzzle to determine if/when to do antibiotic treatment. If "Since the changes in the MAC growth are small he wants to wait." .. that sounds like a good move. If the mycobacterium is NOT colonizing quickly I'm sure he wants you to regain as much strength as possible before starting the antibiotic treatment.

In terms of an inhaler .. I can only speak for myself BUT .. I have been "stable" from the antibiotic treatment since May 2014 .. still dealing with the Bronchiectasis. Since the sputum created from Bronchiectasis can become a breeding ground for NEW mycobacterium .. it is VITAL that we do our "daily lung hygiene" which means coughing up as much of that sputum on a daily basis as possible. For me this has been made easier by my TWO inhalers .. Atrovent and Qvar. I find WITHOUT them I just CANNOT get up the sputum. SO two times a day am and pm before I brush my teeth I use TWO puffs of each one. That is all it takes for me to cough up some rather unpleasant "stuff"! Without my two inhalers I merely cough up clear sputum most of the time .. not the yellow. I can only speak for myself .. but the benefit of getting all that out of my lungs/bronchial tubes FAR outweighs any other concern. I do NOT want another mycobacterium! I ALREADY have two different strains in my lungs .. I don't need a THIRD mycobacterium!

If the Vest works for you and you are able to get what you feel is all the sputum possible up .. each person is different. For me the Vest just didn't work .. truthfully I just tossed it .. was told I couldn't donate it .. personal item.

In terms of steam cleaning .. I also needed to have someone else clean house for me .. the various chemicals REALLY trigger my coughing .. even cough after she is gone until my air cleaners clean up my air! For me .. we downsized to a condo where we were unable to install wood flooring which would have been ideal. So researched and found a Berber type carpet that was based on recycled plastic bottles .. that could be steam cleaned every 2-3 weeks. Also invested in a VERY good HEPA vacuum cleaner .. have done everything I could think of being diligent because I also have 'Reactive Airway Disease" .. react to MANY things .. cough like crazy!

Rosie, sound like you are really trying to do all you can to be as healthy as possible .. that is just great! Just keep on .. keepin' on! Hugs to you ... and keep on coming back .. hope just a little of what I've said resonates and helps! Hugs to you! Katherine

Katherine  -  your comments about inhalers is very interesting and something I had never considered about my own "lung hygiene".  I use an inhaler twice a day, not because it does anything in particular, but because my doctor said it was important to use as a preventative.  It is Symbicort.  You mention two others which you say are important because they make you cough up the yellow sputum, versus clear sputum.  The Symbicort does make me cough a bit just after I take it, but it does not make me cough up sputum.  I am now wondering if I should change inhalers and use what you use so that I do cough up the stuff that can make my lungs feel tight.  I will discuss this with my doctor.  I have not heard of Atrovent or Qvar, but I will do some research on them and see how they are different.   It makes me realize that the actual product our doctors tell us to use can vary and that one should be vigilant in understanding options.  I am very glad you brought up these issues of inhalers.  I also have on hand the inhaler Proair, and I was told only to use that when I feel I am not getting enough air - to use it as a "rescue inhaler".  When I could not breathe well in Idaho due to the altitude, I took two puffs and that did provide relief... but I was told only to use it every 4 to 6 hours.   Are there other inhalers out there that serve as rescue inhalers that might be any better?   I just want to know that I have the right product on hand!    Thank you, Pamela  

I have Proair as a rescue inhaler and Breo as a once daily. They have worked very well for me Pamela. Irene

thanks Irene - I will ask about Breo as well.  Pamela   

Katherine, thank you for your encouraging words. I was also prescribed saline nebulizer treatments twice a day. Found it very abrasive twice a day and I don't cough up any sputum. I have what is known as dry bronchiectasis. Most of my phlegm is from my sinuses and I use saline sprays every day. I thought Symbicort was to help open the airways? I do worry about mucus building up in my lungs since it's hard for me to cough up mucus and sputum. It's a journey my new found friend. I love these forums because we get to share our experiences and perhaps get new insights on how to journey on with these illnesses. Do you know if Atrovent or Qvar are milk laced?
Rosie

Hi Pamela , My understanding is that the symbicort is to open the airways. The saline nebulizers help with making you cough up sputum. I find it very irritating so my doctor told me to cut down on the amount. I don't use every day because I feel worse when I use every day. What are you finding are the benefits to using Symbicort? Have you experienced any side effects?

@melrosedecosmo, Rosie, we are ALL learning from each other! I googled 'are Atrovent or Qvar milk based' and didn't come up with a good answer. This would be a good question to ask of your local pharmacist . they are a GREAT resource! I call them all the time! Check it out and share with us! Hugs! Katherine