My mom: healthiest woman in the world. She is TRULY the epitome of health and always has been my entire life. Walks 4 miles/day, 4 days/wk. Eats all natural, raw, organic foods, drinks her Bragg's Apple Cider Vinegar every day, herbs, vitamins, supplements. She smoked very briefly 45 years ago. Bottom line: MY MOM has ALWAYS done EVERYTHING RIGHT.
Ten weeks ago, she very suddenly got what appeared to be 'bronchitis'. With zero improvement with antibiotics, it escalated to 'pneumonia', bronchiectasis, 'Valley Fever', MAC, etc. Throughout, she visited her primary doctor but had to go to hospital multiple times after-hours with the inability to breathe. She was given antibiotics and anti-fungals, then finally steroids and oxygen, which she has been 100% reliant upon for 6 weeks. She has never had a fever.
Oxygen 24/7 for a few weeks. She did get down to 14-16 hours a day. When attempted to taper off the prednisone a couple weeks ago, she quickly resorted back 100%. Four CT scans, a bronch scope biopsy, and multiple testing thus far show bronchiectasis, MAC (initial 'cousins' at this point), severely scarred lungs and infection throughout all 5 lobes with ZERO progress in 10 weeks.
When 'diagnosed' with MAC by her Infectious Disease doctor and living in Dallas, TX, I found UT Health in Tyler, who specialize in bronchiectasis and MAC. They scheduled her for next week due to the severity. Unfortunately, because it is not more progressed, that has been put on hold until the 'Final Results' are received in 4 weeks.
She saw her pulmonologist yesterday. Her lung capacity is 50%. She is able to walk for 1 minute before her SaO2 drops below 85. They do not know what this is, but they know they don't have time to wait for the final results. Therefore, they are finding a surgeon to perform the VATS procedure next week.
I have been speaking with a wonderful woman on the MAC/Bronchiectasis forum the past couple of days. Based on her experience and mom's symptoms, this has been much too aggressive to only be MAC/Bronch. She gave me a few suggestions to research including Pulmonary Fibrosis.
Thoughts and realistic expectations?
Liked by Merry, Volunteer Mentor