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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa
Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.
Please check in so I don’t worry about you .. just a short note to let me know your current status.
I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!
I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier
https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier--Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate
held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine
Replies to "@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib,..."
Thanks for sharing this information. I am not scheduled now but imagine I will be in about a month.
I am 64 years old and had my first case of night sweats this Monday. It was on waking up. I was dripping wet from my face and neck. I was just finishing strong antibiotics for a cold. I did look on line and found that night sweats are on a list of MAC- related symptoms. I am really taking it easy which seems to help.
Jill, REALLY good info .. thanks for the excellent reply! Hugs, Katherine
Fran, Nan and Jill, thanks to all for the good info to Kathryn .. I'm sure by sharing your experiences so well .. it will help immeasurably to reassure her in going forward with the Bronchoscopy. Through sharing our experiences we help each other! Hugs to all! Katherine
Kathryn, yep .. welcome to the crowd! We all have them to varying degrees. No fun but it could be worse! All I can say is to do your "Gratitudes" .. that things could be worse! Hugs! Katherine
I am saying and feeling more gratitudes especially this week after being able to work for a month now and so much more. It is amazing the peace I am feeling knowing that I don't have to work myself so hard. I have always been very driven, measuring my day by how much I have accomplished. I still don't know whether or not I have MAC - but the symptoms and cscans seem to point there on top of the bronchiectasis. My friends are now more understanding that I don't talk much on the phone and don't push myself to be everywhere all the time. Have a great weekend. (I am going to start by watching a French cooking movie!) And friends are going to help me do lawn work the next weekend. God Bless, right?
Be not afraid of a bronch! I had one...put you under so not conscious...you wake up and it's over! The worst part was sleeping of the anesthesia...not bad!
Thank you Katherine, I was feeling better I thought but today I felt the shortness of breath and the heavy presure on my chest. I think is the MAC disease but my Dr. thinks is my acid reflux. I do a little bit of house work and I'm catching my breath. Sometimes I wonder if the meds I'm taking are working. Anyone has this problem and taking more than 3 x a week? The Unison and the Magnesium are alright with the meds? I will try to find another meds to take for cholesterol. Cila.
I've had hot flashes during the day and at night ever since I started menopause. They are less frequent now, at night I usually have at least one hot spell. I just kick the covers off until I cool off. My pj aren't wet from sweat. My Dr always asks me if I have night sweats. I've told him what happens to me. He says mine aren't considered night sweats. He says with a night sweat you wake up so wet from sweat that you have to get up and change pjs.
Lisa @tutti
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Thanks for sharing your experience and proving that active lifestyles - travel etc. - are still possible. Have a great weekend!