Possible new diagnosis

Posted by slowe216 @slowe216, 9 hours ago

Hi All
I am 52 and live near Denver CO (Female) - I had a CT scan last week for colitis (also being worked up) and the findings indicated non TB MAC in multiple lobes (tree in brach pattern etc). Up until now I've had no major health issues, just IBS.
Things are at least moving sort of fast in that I got into a pulmonogist at National Jewish yesterday who ordered a chest CT as well as PFTS and sputem collection with mention of a possible bronch.
I am dealing with my son having surgery too soon and just in general am freaking out.
I have had a cough for several years with hematotcrit that started to rise. I had a night time oximetry showed some mild low oxygen in 2023 but my PFTS were normal then and nothing else was ever really done. It was attributed to altitude.
Now I know it was likely something like non TB MAC
Anyway, not sure what I am looking for. Maybe just some reassurance that I'll be around for my kids who are 20 and 22 but still need me a lot it seems....and what to expect during texting...Thanks for reading.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | 8 hours ago

@slowe216 Welcome to the MAC & Bronchiectasis discussion on Mayo Connect, the best support group nobody ever wanted to belong to! We all started out "freaking out" to some extent when we got our diagnosis, but with the help of this group, we learned to live with our disease (and the infection, if it turns out you also have MAC.)
First, at National Jewish Health (NJH) you are in the best possible hands - they are the "mothership" of all things related, and right in your own back yard. They can you provide the best education and support, even though the initial process can feel overwhelming. I'll leave it to some of our NJH patients to coach you through - here is an ongoing discussion about it:
https://connect.mayoclinic.org/discussion/national-jewish-health/
Maybe @coffcoff, @smtdoc & @pmmar1 can offer you some tips.

As for reassurance about your future, many of us have heard some version of this from out doctors "Bronchiectasis is a disease that you will live with, not die from. Take reasonable precautions, then go out and live your life."

There are members here who have live with Bronchiectasis for 20-30 years or longer, and are still kicking. My own Mom had it for probably 20 years, as well as MAC in her later years, and died of an unrelated condition in her mid-80's.

My story, in brief, is that I was diagnosed over 8 years ago after living with uncontrolled asthma for about 25 years, and constant "bronchitis" for over 2 years. I was scared when told I had Bronchiectasis, MAC & Pseudomonas, none of which I was vey familiar with. I endured almost 2 years of antibiotics, but have been infection-free almost 7 years. At 75 I can still put in a pretty good day, in spite of Asthma, Bronchiectasis and a handful of other conditions. Yes I get tired, and have had to give over some of my previous heavy work like remodeling, digging in my gardens and hauling to others. But I still enjoy friends, faith, family, travel, hobbies and volunteering. Tomorrow will be a big adventure day - our entire family makes our annual trip to the State Fair, led by our 7 and 10 year old grandsons.

Next, how do we live with this condition? Some people choose to try to take every possible precaution they read or hear about, I call them "the belt AND suspenders type." Others choose to completely continue life as before, hoping that somehow "everything will be okay, " I call them ostriches. Most of us fall somewhere in the middle, trying to reduce the main risks to our health with lung disease, but still living our lives as fully as possible. I call us the "belt OR suspenders type."
Dr Jennifer Honda has an excellent video about living with bronchiectasis:
https://www.youtube.com/watch
And we are here 24/7 to answer questions, help you understand all the new terminology, and offer hugs.
What is the #1 question you have today?

slowe216 | @slowe216 | 5 hours ago

Hi
Thanks so much - I had a whole reply but it didn't post.
I guess until I have more results, I'm just looking for some stories that were a bit more uplifting than what I've seen so far and it sounds like you are one of them. I am very glad you are doing well and living your life.
I hope you enjoy the fair with your family and grandkids - its such a great time of year
I've been wallowing a bit but plan to get moving again this week - I'm normally pretty active.....
I'll check out the video you posted as well
Very grateful to live near National Jewish as well. I worked there many many years ago as an RD.

Thanks again - I'll update some after my appointments Mid Sept.