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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
My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo
Replies to "My name is Christa, I have a child's glee about life, so I am a Unicorn...."
@kaystrand, Kay .. happy for you .. live your life and enjoy the summer! Come back any time you choose .. we will be here! Hugs! Katherine
Yes I get flu and pneumonia shots every year also. I also wash my hands all the time, of course, when I come home. If I even think my throat is getting scratchy, I gargle salt water like a lunatic, and that seems to take care of it, so far, so good! xo
I get flu shots every year as well. But they are not fool proof. Although I've never had flu and only had cold a few times in the past 30+ years, I've reached the age when my body is becoming more vulnerable. Having bronchiectasis & MAC is not helping the situation. So I need to be more mindful and careful from now on.
Hi, it's hard to digest all of those words of wisdom but I know that it comes from a place of love & it's what I need to hear. There's so much going on with my body that I can barley keep up. But you are absolutely right, I am NOT my disease...it doesn't define who I am...I've been letting it do just that. I've been living in a place coming from fear. It serves me no good whatsoever. I need to keep working on this...keep reminding myself of this negative thinking & how it's hurting me & controlling me & consuming me, leaving me with little to none to put towards the things that I love & make me happy. I'm still struggling with this... how to live a happy, intentional life while still having illness (lung disease, heart failure, diabetes, neuropathy) . I need to learn this!!! These illness can't define me... thanks for your sincere words of advice, Katherine. I will work on educating myself more & on having a better, more positive attitude in life! I just need to keep at it!!! ~Jen
@jentaylor, sending you BIG hugs Jen! Katherine
I can feel your hugs, Katherine!!! Much love to you ~Jen
@kaystrand, You will be missed. Go enjoy your life and stay strong!
Becky
@katemn Hi
Katherine! Did you learn something more about the colonizing?
@windwalker Terri, the opinion of ONE doctor re: colonizing:
One colony certainly suggests very little MAC in the sputum. When the lab says "few" it usually indicates 2-10 colonies. I did not ask her what "Many" meant! Someone should ask the same thing of THEIR doctor: One colony/Few/Many .. what is THEIR definition. It would be interesting to see what different doctors say!
By the way .. most recent sputum culture box I got for mailing in from Mayo Clinic, Rochester MN had the check option for:
3 times; EACH DAY FOR 3 DAYS, at least 1 teaspoon each day
INTERESTING! You said at the 2017 Conference this was going to be the "new Gold Standard" .. Hmmm ,, maybe Mayo has already started it??! Hugs to all! Katherine
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@colapyrus, Jan, THANK YOU for the info! I will add this" Dr Daley told me in May" .. always good to quote the source! Hugs! Katherine