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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
@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! PLEASE do not be so afraid! We ALL have been down this road .. we will be with you hand in hand now .. through out this journey of yours .. our SHARED journey .. we have ALL been down this SAME road as you have now started. We ALL were scared like you are right now.
BUT you will find IF 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 .. ask any questions you have .. we will be here for you .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine
Replies to "@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It..."
Diane, WE ARE good .. but this is a public place .. I HOPE Colleen quickly sees this and DELETES your personal phone number .. NEVER share personal info on a place where the public can access .. some BAD people out there also! Wish I knew how to do it. I've emailed Colleen but she deserves a week end off! Let's just hope no "trolls" are lurking on our site! Be careful all! No personal home addresses, last names , phone numbers. WE are safe and good people .. but unfortunately all the world is NOT like we are. Be safe .. be happy! Katherine
Hello @dianelobosco Diane, we are in luck! Colleen got my email and quickly removed your personal info .. we ARE here for you on our Forum .. you just post any questions you may have .. we are here! Hugs to you! Katherine
Good advice. I know many times I have wanted to talk to a real,person Katherine. Just because we might be good and trusting people doesn't mean everybody else is - sad, but true. This forum is not only a great place to learn and share, but also a great place to not feel quite so all alone on a very difficult, life altering journey. We all need somebody to "talk" to sometime. Before my son suggested I join this forum I never knew anybody that had MAC except me. I never had even heard of it till being diagnosed with it. Apparently, there are a lot of us. That is comforting and scary all at the same time. Irene
@irene5, I SO agree Irene .. you are very lucky to have such a good son that he sought out a Forum for you .. support .. a good guy! You are indeed blessed! I like you had not a clue what it was all about when I was diagnosed in 2007 .. am still very aware that rarely do people even RECOGNIZE the disease when I name it! I am so used to it that I usually just say I have a 'lung condition'! So be it ..it could be a LOT worse! I just try to count my 'gratitudes' and be happy with what I have .. NOT worry or put energy into what I DON'T have .. a total waste! You have a son who cares about you .. that is a BIG gratitude! Hugs to you! Katherine
Hello Katherine, how you doing with Expand -A - Lung? I got one from amazon. Did it help your breading? Did you used Aerobika for your bronchiectasis? Thanks. Cila
Welcome Diane, I'm sorry your going through difficult time. It will get better and I remember the first time I was diagnosed w/ MAC I was terrified. I'm doing a lot better now mentally and not getting panic attack. I have been taking the 3 meds for 6 months now. I always look at the bright side and keep telling myself I will not let this critter to make my life miserable. We are all here for you. God Bless you and have you in my prayer. Cila
@cila, Hi Cila, I have a confession to make .. I have been essentially been "playing" for the past two months .. literally just arrived home tonight .. SO I have been naughty! I have NOT been using my Expander! BUT I now have it on hand .. AND you are motivating me to get moving on it BECAUSE I know on my last breathing test at Mayo my results are SLOWIY declining over the pas 10 years. Now I know it is partly due to the aging process .. BUT I know very well this little gizmo WILL be absolutely excellent for my lungs IF I get my act together and use it several times a day! Thank you for motivating me!
No I have not used the Aerobika .. I tried it a couple of times and didn't really like it .. works though for many people. Hugs! Katherine
@cila, Cila, thanks for jumping in for Diane. It REALLY helps for new people to hear other's stories .. that there truly is a light at the end of the tunnel .. that it does get better! You have such a great attitude .. it just shows through! Hugs to you! Katherine
@cila, Cila, I just realized I was mixing up the Aerobika with another device. How effective in getting up the sputum has the Aerobika been for you? Worth the $100? I see it can be purchased without a prescription. I get SO tired of coughing to get up the sputum .. if it helps you a lot without so much coughing .. I'd be willing to give it a try. It was the Acapella device that didn't help me. Hugs! Katherine
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I am so blessed to have found thos site and appreciate you reaching out to me.