← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Discussion
Comment receiving replies
@katemn

Dear All,
As I have said to Colleen .. it is much easier for me to give than to receive .. as such I am oh so aware of the caring and support you all feel for me .. but truthfully it sometimes makes my journey more difficult for me if your support is more than just a silent hand over heart message of positive energy .. know that I will receive that positive energy and become stronger for it .. energized by my dear Forum. That is what I need from you right now .. not the need for me to return any actual posts of support and caring .. I know you care without your posts.

That said I have some news to convey. I have been very ill since February 5. At times too ill to reply to your posts .. and as Colleen told me .. the Universe knew .. and there were NO POSTS during that early period! It was too funny! Finally toward the end of that silent period one unnamed member said .. to paraphrase .. "Why, with no posts for so long .. I thought everyone had been cured of MAC!" So for those 9 days it was pretty rough. Since then, my only activity has been to answer my Mayo Connect. Your posts have been my "happy place" .. even though many of you are going through tough times .. we all remind ourselves of "the journey" .. it's downs .. BUT it's many UPS!

I finally got an appointment at Mayo Clinic in Rochester for March 7 due to a cancellation.

So the news:
Yesterday was a tough day. Today is a better day. Yesterday I saw Dr. Timothy Aksamit at Mayo Clinic who I have a world of confidence in. The news was not great .. can always be worse .. good news was that my MAC has NOT returned! BUT it turns out that as a result of my compromised immune system and my Bronchiectasis .. I have developed a different bacteria .. Like Mac .. it is not curable .. only treatable. .. called Pseudomonas Aeruginosa. Several of our MAC & Bronchiectasis members have the same bacteria.

Dr. Aksamit is going to first try 500 mg Cipro 2x a day for 28 days .. which I have heard referred to as a "cannon" antibiotic .. hopefully that will "stabilize" this new bacteria as my MAC has been stabilized since May 2014.

If the Cipro does not work .. then I go on a 28 day on 28 day off cycle of an inhaled antibiotic called Tobramycin. Obviously I am hoping the Cipro works!

Jump to this post


Replies to "Dear All, As I have said to Colleen .. it is much easier for me to..."

<br><br><br><br><br>Katherine, it breaks my heart that you were so ill. The jig was def up when <br>you disappeared from this site. How are you feeling and doing now? -Terri <br>M.<br> <br><br>

@windwalker,Terri and All, still pretty sick. Just one day on Cipro. BUT no more about me .. LAST discussion! PERIOD! I appreciate all your concerns but my focus is on YOU! PERIOD! Hugs to ALL! Katherine

Sending u luv and strength

Katherine, Sorry to add one more, but it is good for you to learn to receive anyway! So sorry to hear that you are sick. You are in my prayers for complete healing - pronto!! You have blessed me and others beyond measure with this discussion group and we need you! That being said, take care of you first. We aren't going anywhere!