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MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Replies to "Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?..."
oh wow @katenm this will be great for many people,good on you for getting to the front of the line, your hubby is very lucky having you advocate for him! How great that we may just need a blood test to test for this MAC now. I joined the FDA website and I get sent monthly info from them which is useful.
<br><br><br><br><br>Your husband is lucky indeed to have you! What is CLL?<br> <br><br>
@windwalker Terri, CLL is a blood cancer .. a leukemia. He has been on a new chemo, Imbruvica for the past two years and has been doing quite well .. we have been told it NOT a cure but is "life sustaining" .. we are delighted! Hugs! Katherine
<br><br><br><br><br>Thank you. I had never heard of that. I am glad he is getting good care. <br>does he go to the Mayo also?<br> <br><br>
@windwalker, Terri, actually no .. we found a fantastic Oncologist when we had a winter home for 7 years that we return annually for a check up .. we have such confidence in him! But we know we could always go to Mayo also if he stopped doing so well! Hugs! Katherine
<br><br><br><br><br>Ah........that is good. I wish you both continued success!<br> <br><br>
@heathert .. WOW! Heather .. this is really interesting!! My husband has actually had Sepsis TWICE!! Once as we were walking out the door at Mayo Clinic Rochester MN! It was so scary .. I had never ridden in an ambulance in my life before! This was an instance when my ability to be an Advocate took hold! I always carry a thermometer with me when I am with him .. the hospital had patients in the Emergency room lined up in the HALLWAYS waiting to be processed! People lined up at the Nurse's Station waiting to be spoken to. When I took my husband's temp and it was 101.5 .. AND he has CLL .. I marched right up to that Nurse's Station .. pushed in front of a Policeman (who was NOT very happy!) and said "My husband has CLL .. he has a temp of 101.5 .. you get him into a room RIGHT NOW and an IV antibiotic RIGHT NOW!!". I was NOT going to be denied!! I was SOOOO correct .. it turned out he had SEPSIS and could have died!!
Having had so many life experiences like this may be why I am SO big on being on being our OWN best advocates!
A link to this is: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm543160.htm
Again Heather, thank you for this information! Hugs! Katherine