conniec
@conniec
@conniec
Posts: 5
Joined: Apr 23, 2017
Do Bronchiectasis and MAC go together?
I was diagnosed with this in January. Had pneumonia in November. My dr didn’t tell me to get a sputum sample til my second visit this past week. He started me On nebs and aerobika treatment. I had a second Ct scan and am not sure if there were changes. Does bronchiectasis and MAC go together. It seems like most people here talk about MAC and not bronchiectasis?
Liked by lenibby
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3402
Joined: Nov 18, 2016
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
Hello Russ, JAX is short for Jacksonville, Fl. everybody down there uses
that abbreviation. It took several months before I could get an appt. It all
depends on how busy they are. They do not require a referral, you just call them
and ask for an appt. They will ask that you bring all of the medical records you
can get your hands on. They will then scan your records right there on the spot
and create a file. I love the Mayo because they operate like a well oiled
machine. Generally, they do labs first thing in the morning, x-rays and/or CT
scans, and any other tests they might need; then you meet with the doctor at the
end of the day. He has all results back and are in his computer. He then goes
over the findings and discusses treatment.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6767
Joined: Jul 23, 2014
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
Hi @russt,
You’ll find the online appointment request form, as well as phone numbers for Mayo Clinic Jacksonville at the link http://mayocl.in/1mtmR63.
russt
@russt
@russt
Posts: 7
Joined: Apr 29, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
Just what I hope to hear. Have you ever been to the site in Rochester? I tried to make an appointment at JAX and they told me they don't have any for some time, like you said, and refered me to an afiliate site in Pensacola. I work on the "Roman Coin Principal":
the futher you get away from Rome (Mayo) the less recognizable the coins (medical care) are to the coins struct in Rome, so Im setting my sites on Rodchester, since JAX is not available.
Hope you doing well.
Russ
russt
@russt
@russt
Posts: 7
Joined: Apr 29, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
Thank you Colleen.
Russ
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3402
Joined: Nov 18, 2016
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
Wow! I had no idea they were so booked up now. Good for you to make
sure you get the BEST care.
conniec
@conniec
@conniec
Posts: 5
Joined: Apr 23, 2017
i have been trying to schedule for pulmonology at Mayo Rochester and they are also booked way out and said I just needed to call daily to see if anything opens up!!??
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
Dear All .. am posting this video on this area because I think it is so good! Just found a GREAT explanation/video on Bronchiectasis and why the blood!! Watch it .. SO glad I found it!! Hope it helps you! Hugs! Katherine
Rona F
@ronaf
@ronaf
Posts: 15
Joined: Jun 08, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
I’m told by my pulmology-infectious disease Dr. at Stanford Medical (he’s one of the best), if you have MAC you have bronchiectasis. However, you can have bronchiectasis without having MAC. I have both. Symptoms started with a persistent cough. However, I wasn’t diagnosed until I had coughed up some blood. My PCP ordered a chest Xray right away. This came out abnormal. I then had a series of 3 sputum tests ( 3 days in a row). They did a fast culture, which came out to be NTM: non-tuberculosis myco- bacteria, or better known as MAC. The sputum test was then followed up with a CT scan.
One can have MAC for years without symptoms. My lung Dr. guessed I had it for months to years before coughing up the blood.
Liked by Katherine, Alumni Mentor
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
@ronaf, do you have a first name .. more personal! @ronaf, you are right on! By the way .. what is the name of you doctor at Stanford .. if you feel he is good I will add him to my File Cabinet .. we are always looking for good references! When you say “However, you can have bronchiectasis without having MAC.” .. the PROBLEM is that the Bronchiectasis becomes a BREEDING ground for the MAC as well as other nasty bacteria .. sometimes before our Members even REALIZED they had the Bronchiectasis. It is a vicious cycle!
So glad you had a good doctor and got diagnosed. What meds are you on now and how are you doing? Glad you found us! Hugs! Katherine
ling123
@ling123
@ling123
Posts: 329
Joined: Apr 06, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
@ronaf, my situation is very similar to yours. I had persistent dry cough and thick mucus for many, many years. My initial diagnosis was allergies and had been treated as such until one day out of the blue I coughed up blood. They thought it might be TB but 3 sputum tests suggested it was not TB. Then another series of 3 sputum tests (they did not look for MAC for the first round test) confirmed that I had MAC. My pulmonary doctor believed that I had had bronchiectasis for a very long time and caught MAC later on because of damaged bronchi. Although I have had a long history of bronchiectasis, so far I do not suffer from diminished lung function, at least not anything that is evident to me. I play tennis 2-3 times a week with no negative effect on my lungs.
Liked by Katherine, Alumni Mentor
Rona F
@ronaf
@ronaf
Posts: 15
Joined: Jun 08, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
My first name is Rona. Hi.
I realize one affects the other…i.e. bronchiectasis and MAC. My guess is, there are many who have MAC & may not know it because they haven’t had symptoms, thus haven’t been tested and diagnosed. My sister was diagnosed with bronchiectasis years ago. But never tested for MAC.I though of suggesting it to her. But decided against it. One of my exercise instructors has bronchiectasis, but evidently not MAC. I have no idea if she’s been tested.
In any case, my Dr. is Dr. Stephen Ruoss. A busy guy, who also does clinical studies and research. I’m on 4 antibiotics. The orals are rifampin, azithromycin, and ethambutol. I was on IV amikacin for 5 months, because I have a cavity on my right upper lung. My Dr. wanted to “hit” it hard. I’m now on inhaled amikacin. I’ve been on treatment since August of 2016.
I’m doing better, feeling better mostly. As long as I sleep long and well, I feel fine.
My lungs were looking better in Jan. from my CT scan results, so, my Dr. took me off the IV & put me on the inhaled amikacin. I’ll be going in for another CT in July.
Liked by Katherine, Alumni Mentor
Rona F
@ronaf
@ronaf
Posts: 15
Joined: Jun 08, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
Hi, Sounds similar. My coughing up blood came 2 months after the cough. My PCP gave me a cough suppressant. Didn’t do a darn thing. Then when I coughed up blood I called her & she sent me in right away for the lung Xray. I’ve always had what I thought was allergies. Sneezing, blowing my nose. My Mom did also. I wouldn’t be surprised if she had bronchiectasis. My sister was diagnosed with Bronchiectasis years ago. But has never went in for anymore tests. She feels fine and has no symptoms. My Dr. doesn’t know which came first; the MAC or bronchiectasis.
Liked by Katherine, Alumni Mentor
ling123
@ling123
@ling123
Posts: 329
Joined: Apr 06, 2017
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
@ronaf, good thing you didn’t continue with the cough suppressant. Coughing helps us expel the mucus accumulated in our lungs. The excess mucus is hot bed for bacteria. When coughs are suppressed, it makes it easier for the bacteria to grow in our bronchi. MAC is ubiquitous. It is found in water and soil. Most people don’t get sick when they are exposed to it. When some of us catch MAC, it is because of damaged/weakened bronchi making it likely for the bacteria to be trapped and fester. Not everybody who has bronchiectasis has MAC. But I’m not a doctor. I only state my personal understanding from what I have read about the problems.
Liked by Katherine, Alumni Mentor
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3402
Joined: Nov 18, 2016
@colleenyoung Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.
@ronaf See?
Here is an example of a sputem test done correctly. Three consecutive days,
three samples. This is what Drs at the conference are trying to get passed as
the standard that ALL physicians use.
Liked by Katherine, Alumni Mentor
@russt
In reply to @colleenyoung
Hey WW, hope you are doing well. You mentioned "JAX". What is that? Also how long does it take to get an appointment ay Mayo? Im in the process of getting clearance from my doctor and Humana and want to set up an appointment as soon as that happens.
Happy Labor Day,
Russ