@jennifernicole, you asked "Can anyone share what evidence of MAC/MAI on a cat scan includes?". Evidence of MAC/MAI? A scan is not direct evidence, I believe, since you need tissue/mucous from your lungs to be 'evidence'.

Here's my story, when I was diagnosed 9-10 years ago. I had a chest x-ray that was not good, my fabulous young internist immediately sent me for a CAT scan. It too was not good & alarmed her - I had 4 nodules on one lung and a scattering of something in the other; if I recall correctly, several were the size of the first joint on my thumb. Within 3-4 days I was in to see a pulmonologist. We spent an hour talking about me, my lifestyle & uneventful health history, and looking at my CAT scans. He said "I see women like you every day that have scans that look like this, and they have lung cancer." I was an administrator at a local university, and I think the doctors took that to mean give me all the information I could ever want – also, I asked tons of questions. Based on my lifestyle and unusual symptoms, after an hour of discussion he said it could be 4-5 different things that are showing up in the scans. A few days later, I had a lung biopsy of tissue and mucous from areas of my lung -- the only way to determine it was not cancer. The pulmonologist called me that evening to say one specimen was growing bacteria like crazy (a very good sign, we felt); but any malignancy diagnosis would be a few days to come. Since then, over the past 9-10 years, I've had one more bronchoscopy and 2 lung lavages (washes). So I believe CAT scans are a diagnostic tool and can show symptoms of something -- and after an affirmative diagnosis, CAT scans can measure increase/decrease in size of the nodules or lesions, etc.

Just my 2 cents worth.
Paula

Jen, those descriptive words you used to describe your scan sounds more like bronchiecstasis than MAC. Do you know if you have that also? The two usually go hand -in-hand. I was told at the conference in D.C., that to get a truly accurate account on whether you are truly infected with MAC is to have THREE sputem samples taken in the mornings of three consecutive days, from a deep cough.. Refridergerate them until you can get them to the lab, and tell the lab all three are only an hour old; or else they won't take them. Even our best Gold Standard institutions don't do this, but that may be changing in the future. You can also request that it be done that way. Everyone has MAC in their lungs, the thing is to find out if they are colonizing.

Paula, i agree. The CT scan gives the doctor a base. I, too, had a large nodule on my lungs and was diagnosed with MAC after a sputum culture and put on the 3 big antibiotics. My doctor wanted another CT scan 2 months later, before she did a biopsy to see if it was cancer, which she didnt think it was. The second CT scan showed the size of the nodule had shrunk by 2/3. What a difference. She showed it to my husband and I and it was unbelievable. The meds are working and I'm now back to going to the gym and singing in the choir at church. Amazing that i have more air in my lungs than I've had in a long while. For the first month, it was bad with the nausea and i almost gave up, but my advice to anyone is "dont quit". It gets better. I was also diagnosed with bronchiectisis 23 years ago. Thats under control with nebulizer treatments twice daily. I'm 75 years old, but i can honestly say I can keep up with anyone 25 years younger. Never give in. Ever.!!! Kathi ( 2-10-42)

I have been diagnosed with bronchiectasis recently during this 10 month period of multiple pneumonias. The MAC/MAI was diagnosed after a bronchoscopy with lavage. Hard to tell of my symptoms are from active MAI or something else. I start the third antibiotic today (rimpafin?) and keeping my fingers crossed!

@21042, Oh my, I love your attitude!!! And I think a good attitude is essential when dealing with any chronic illness.
Boy, I sure am jealous that at 75 yrs old, you can keep up with anyone 25 years younger. Bravo to you!
Re. the meds, I too was so very nauseated when beginning the drugs, or when I had to change where I got my drugs from (different manufacturing plants perhaps?) And the lethargy and fatigue is awful. Yep, "don't quit", it does get better. Best wishes!

Hi @windwalker, I was told last September, during a hospitalization, that I indeed have bronchiectasis. Then at Mayo, their interpretation was that I have bronchmalacia, not bronchiectasis. But my local pulm disagrees. Like I said, I have 5 doctors that disagree & we just had a new pulmonologist do a bronch this past Wed. to collect yet more lung washing for culture. So I am very confused on what is what & what is best to do. For now, I guess I will just sit & wait the 6 weeks for the culture report.

When I was at Mayo, we tried to get the three consecutive days worth of sputum specimens at God early time in the morning. The last day I ended up in respiratory failure & ended up admitted to the hospital at Mayo. And when trying the high concentration saline nebs, I still wasn't able to bring up the mucous! I rarely can. That's why we resort to doing bronchs so often...to clean out all of the mucous in my lungs that I can't expectorate & to obtain washings, instead of mucous, for culture.

And some of the bronch washings that were negative for MAC, they believe could have been because I was on antibiotics that they use to treat MAC when I got the bronch & they collected washings for culture... interesting. I don't know what to think! ~Jen

Hi Kathi, I must say that your words are very inspiring, especially considering your age! I love it!!! Much love, Jen

Hi @jennifernicole, Stay strong! You will be in my prayers today!!! Much love, Jen

Jen, first of all, you get a great deal of empathy from me. I have had only
one bronchoscopy procedure. That was the worse thing ever! They did it without
sedation of any kind. Anyway, back to you.......I guess you are totally
confused! The Mayo has a social worker and a psychiatrist you can talk to. Maybe
one of them can help you to sort out how to navigate through all of your health
issues. I know that has to be maddening when you get so many opinions. Start
asking to see the actual lab reports and have them explained. Sometimes having
them put a hard eye on it may bring more accurate diagnosis. Def do your
homework. Look up and learn all that you can about your health issues. There are
many medical institutions that are great sources of
information online. That info at least gives you ideas about what
questions to ask the Dr.
How are you feeling today?    -Terri M.
 
 
 

Hi Terri M, I have been on Avelox since my bronch on Wed. I often have an improvement of symptoms in the beginning of the therapy BUT after about 5-7days of taking the antibiotic, I start to decline again. Then we often have to switch to a different abtibiotic which as you all know, leads to antibiotic resistance! It is very scary to think of what antibiotics will still work for me as I age...I'm only 42 & have many years to live yet (God willing). This overuse of antibiotics & constantly stopping one too soon & starting a new one can not be a good thing. Who knows if the traditional MAC meds would work (scary thought). So all of that being said, respiratory wise, I am feeling better right now. I'm breathing pretty well & my cough is more of a cleansing, productive cough intstead of that nagging cough that's not productive.

Mon. I took a 10 min slow paced walk around the block with my daughter, Emma & our dog! It went well. Little SOB (short of breath) but I did pretty well I think. After reading Katherine's motivational post, talking some common sense into me (in a loving way), I am feeling a little more sure of myself & telling myself it doesn't matter what other people think of me when they see me with oxygen on. Wear it regardless! So I'm working on that!

I start Pulmonary Rehab next week & I am so looking forward to it! I will get to exercise in a very safe, controlled environment with constant oxygen/pulse ox monitoring along with other vital signs. It is three days a week for about 1 -1 1/2 hrs. The respiratory therapist said it should really strengthen my lungs! I'm so excited!!!

I am a long writer if you didn't notice! I will try my best to limit myself & hold myself back from over-writing! I know there are many people on Connect & trying to read through all of the posts takes a little while & add in a long one, & it takes longer! Sorry!

Take care, Terri M! Much love, Jen