Thank you for telling Jen all that Katherine. We all have our struggle with this, and we all handle it differently. Some days are better than others, but it is all in our attitude about it. That we have control over!

Yes, Katherine, my pulmonary doctor can be reached very easily and appointments can be made with him pretty much any time I need them. The last time I detected blood in my sputum, I just emailed him and an appointment was made for me right away to go in and see him. I will be seeing him for check up in September. In the meantime, I'm enjoying the summer and all the fun it brings.

NJH said that they usually treat MAC if you have over 200 colonies and don't treat if you have less than 50. I guess the numbers in between are on a case by case situation. My first culture done from a bronch washing was not even 'counted'. So the labs that these cultures are done in need to be sophisticated enough to count the colonies. Jan.

Jen, I know this is easier said than done, but you have to really try to get to a place of peace about all this. Many things in life aren't fair and truly knock us down, but we have the choice to let or not let this disease define us. I was diagnosed when I retired. Not a great retirement gift. I had plans of going back and volunteering at school. I weigh a whopping 77 pounds now - every day is a struggle for me - but every day I am here is a gift! Worrying takes away too much quality time. I recognize how conflicted you are, and although you don't know me I am sending you a healing hug and faith filled energy.

Hi Jen, yes so scary. When I went to hospital caughing up blood, it took them 4 days to rule out tb (cool private room though). I told them no tb but MAC, but still had to wait for CT scan, then get docs appt. before they would give me meds. I had 3 negative sputums samples for MAC, and finally a positive one. I went home after 4 days, still with blood sputum just waiting for everyone to get it together, and they finally did and put me back on the meds. So to me, this is a disease that does go dormant for a little while, but because of the enlarged damaged airways, we always reinfect. I think the meds are forever, but I take breaks because so hard on system.
My doc at Massachusetts General is pretty good, he put me on exercise and nebulizer, but I have been waiting for the nebulizer for a month, and caughed up blood again, so I put myself back on the pills. I dont know what else to do. I don't caugh up blood when on the meds, and it seems to take about 4 months off when the blood comes again. That has been the pattern for a few years now.
At least we know it is very slow growing. I try to avoid groups of people and don't go to christmas parties, because everyone is sick! It's too easy to get pneumonia with this disease! And then, that's the end game! xo

@colapyrus, Jan, I'd like to put this in my File Cabinet .. do you have a link to it .. where did you read about the colonies? Thanks! Katherine

@unicorn, I never used to think I needed to avoid people when everybody in the office was coming down with something because I had rarely gotten sick from them. But situation seemed to have changed a bit earlier this year when I caught a cold that started as laryngitis. By the time it got to my lungs I started seeing blood in my sputum. I knew it was because of my bronchiectasis. My pulmonary doctor prescribed 10-day's worth of antibiotics and the blood was small blood clots that lasted a couple of days. I was lucky I didn't get pneumonia. But from now on, I will follow your suit and try to avoid crowds, especially during the cold/flu season. Definitely do not want to get pneumonia.

@ling123, and @unicorn, I think you are BOTH smart! Both my husband and I religiously get the flu shot each year .. BUT this year lo and behold we BOTH (I'm sure gave it to each other) got DEATHLY ill from Influenza B!! We told by our doctor it was just ONE of the flu NOT covered by the flu shot .. AND with both of us with compromised immune systems .. sure enough .. it hit us hard! So forewarned is forearmed .. as the saying goes! Hugs! Katherine

Hi Forum Friends
I'm taking a break from the forum. The emails are overwhelming right now and I want to focus on many things I need to get done in life. I simply don't allow myself to delete email, so will disconnect and talk with you all later.
Thank you nice friends for all your help for the last almost year!!

Kay Strand

That's what Dr Daley told me in May when I was at NJH. The nurses mentioned the same numbers also.