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Wed, Apr 22 4:44pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you @colleenyoung . We need all the help we can get. I've been staying at home for a long time now except Dr appointments so I'm ok with it. ive pushed all appointments off til june and it looks like i will be putting them off til August. I've also worn mask and gloves and keep a trench coat at the door that covers most of me and I keep protective gown and shoe covers for visiting mom at the nursing home. Or if i have to be admitted to the hospital for any reason. You guys take good care of yourselves.
Becky Lyons

Dec 21, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie, thank you so much. I am hoping there is healing for all too!
You are loved for all you do.
Becky

Oct 31, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait… I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!

Sep 2, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker and others in this storms path. I can't even imagine what you all are going through. With a threat like this and the uncertainty of it all. It is so hard get around with chronic illness on a good day. May the coming days be easier as each day passes. With your community, family and pets being safe, calm and comfortable. Finding shelter from the storms looking out for one another as you help others and receive help for yourself . May God send blessings your way. All of you are loved and appreciated for all you do ♡♡♡

Sep 1, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker , I'm praying for you and all affected by the hurricane. Praying for safe travels by those needing to get out of the way of this storm and for those unable to leave. Spare them all from the devistation of this hurricane. Show all of them the power of your love and shelter them in your arms. Amen
Becky Lyons

May 13, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I can't tell if pictures came through of my email or not

May 13, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker , Thank you for getting back to me so quickly. The DNA Test is an at home one that is from mayo clinic and then sourced out. It was heavily advertised around last Christmas and again at Mother's Day. It was sent directly to my e-mail hence my resent curiosity of the test. It is not something the doctor would order you just buy it at the mayo clinic website for 149.00. I would do it if anyone else had good information from it. I have so many diseases that I'm surprised I don't syndrome after my name. I would welcome any new information thru reliable testing. So I am asking the group if anyone has used this and had received helpful information from it. Thank you so much for your tireless devotion to our group. You really stepped up after we lost our group leader. You are loved and appreciated ♡♡♡
Becky

May 9, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

It has been a awhile since I posted anything but still reading all the emails from the sidelines. Wondering if anyone has used the mayo clinics genetic testing and was it helpful. I am thinking about getting one.
But Money is tight.