auntnanny and jenablock....your conversations re GERD and the testing and its treatments are fascinating. Since l have been told ...for decades...that l have GERD...did have an esophagram locally that showed slowing ...but none of the other tests....and NJH accepted my diagnosis and the esophagram results....and said my cough was from Gerd silent aspiration and aimed all the treatment...no antibiotics toward the GERD.
they did do a sleep study....l do have sleep obstruction and am on CPAP now.
tdrell

@tdrell It seems all treatments are focused toward GERD at NJH which makes me a bit skeptical. Although they are the professionals and I do notice certain traits of GERD in myself now yet I never really did before (self fulfilling prophecy?). Being me, I have to go those extra steps and get it as confirmed as possible hence the tests I'm doing Tuesday. I did have an esophagram (I think that's what it was called) at NJH. Is that the one where you drink the liquids and they tip you on the table? It showed very slow motility. That gave me some assurance but not quite enough.

Anyway, it's really great that they did not put you on the meds! That's one inconvenience you can forgo. I can't remember. Have you been diagnosed with NTM? Did they attribute the sleep disturbances to your issues?

Jenblalock.... I reread what I wrote re my GERD issue.....I wrote NJH did not put me on meds for GERD....I meant to write did not put me on meds for MAC. I have been on Nexium for GERD for decades. They told me to wean myself off it .....which I am hesitant to do.....going to local GI doctor....will ask him re confirming GERD with tests you folks have mentioned.
Since I had had coughing and mucus for 2 years....amoungst other tests had bronchoscopy here locally in Wisconsin where I live.....in July 2016.,..it found MAC and obstructive sleep apnea. NJH 6 months later repeated CAT scan and sputums and concluded I did not have active infection in lungs..MAC was coming from water in our pipes and I was silently aspirating it....hence treatment aimed at weight loss and GERD guidelines...getting CPAP...had sleep study there. TDrell

@tdrell

You mention "silently aspirating" in your last post. Does this mean that you don't cough when you aspirate?

Teresa

Hopeful33250....I understand silent aspiration to mean fluids from stomach ...without me being aware....come up from stomach and or esophagus and enter into my lungs. I am unaware when this occurs....I am be leaning over....or lying on right side in bed. Tdrell

jen aunt nanny - tdrell -- So much being talked about MAC, Bronchiectasis and GERD - Hearing one thing from Mayo and something else from NJH - it all gets very confusing to me - who and what do you believe?? I have been treated for asthma for almost 25 years and was treated for GERD early on because I could not get asthma under control Then a few years ago I got MAC and was taking the Big 3 for a year. After the Big 3 I still seemed to be still coughing up a Iot of mucous and thought I still had MAC but had sputum culture done and later bronchoscopy and did not have MAC then had breathing tests and was told I had bronchiectasis and probably had had it for a long time. My lungs are at about 45% of capacity. I chose to stop taking the GERD med as it can affect your liver. My primary doctor said it was okay. I told my pulmonary doctor I stopped and he just said if I start coughing more I should go back on the GERD med. So far I have not had my coughing get worse. The thing that has helped me the most is the 7% saline solution in my nebulizer along with the albuterol. I have been on Advair 50/500 for many years starting with the asthma. Recently I have tried samples of spiriva - and a few others along with Advair and it did not make my cough any better. The 7% saline solution has helped the most to get the crude up and out so I do not cough all day. I have used the CPAP for awhile too and it did not help either so stopped that too. I am tired most of the time and get winded easily. I did not do well on the 6 minute walk and most oxygen level was getting below 88. I am not on oxygen at night, when I exercise and when I need it. I am 71 years old and have no desire to go through all the tests you folks have had at Mayo and NJH. If I were younger and still raising young children it might be different. One pulmonary doctor I had many years ago thought I had COPD and never really had asthma. I don't know what to believe any more. I never smoked but inhaled a lot of second hand smoke when I was younger and working. I have learned a lot from the Mayo thread and Inspire and I thank you all for sharing. At first I thought I was alone with the MAC (had really bad night sweats with it) and the Bronchiectasis. It is nice to have a support system. People look at me and think I am fine, especially since I don't cough all day --- just after I use my nebulizer. Thanks for listening (reading)!

@barbie46 You sound like a good many people on this forum. It sounds like you've had most of the same tests we've all had and I'm glad that your MAC is cured. I do the 7% saline also although I really don't cough much anymore unless I get pneumonia or bronchitis. I took MAC drugs for 15 months and it got rid of the MAC for me too. My lungs are damaged with some bronchiectasis and a couple of cavitary lesions but my oxygen level is still very high as if they weren't damaged at all. I used to run (and plan on getting back to it) so I credit that for my good lung capacity even though they are damaged.

I'm sorry that you lung capacity is so low. Has the doctors given you any exercises to do to increase the capacity? I'm not really sure how that works or if it is possible but just wondering? I do know that I am supposed to work out so that my heart rate gets up and I am breathing heavily. It helps clear the lungs.

My understanding is that the CPAP is to help with sleep apnea if you've been diagnosed with that. My sis-in-law uses it and although she doesn't notice any immediate results she said after a few weeks that she feels less tired and more energetic.

Best to you.

@barbie46 As far as who or what do I believe. I can only speak for myself but I take what the local specialists recommends and also what the National Jewish specialist recommends. Then take into account what I consider their biases. I also do my own research and try to make the best decision based on that. I also have requested to be referred to other doctors, such as the GI doctor to get the 24 hour PH test to help me confirm diagnosis.

The way I see it, no one cares about my health as much as I do. To the doctors, I am just another patient. So it's up to me to get the best care I think I need.

Jen - Thanks for your feedback. It is just very frustrating at times. When I tried the CPAP I used it for about 5 weeks and sometimes felt worse in the morning than before I used it. I have just mild sleep apnea. I have been through pulmonary rehab which helped some and I exercise every day - but not enough aerobic I believe. Yes, all the doctors have their biases. Most local pulmonary doctors do not know much about bronchiectasis. I had the breathing tests done recently after two years and my lung capacity is about the same. At least it has not gotten worse. I do continually cough up a lot of mucous when I use the 7% solution. If I don't use it I am coughing all day and people think I am contagious - so that is better. I sure have learned we have to be our own advocate. I remember is my 20's my primary doctor doing the basic breathing test and I did terrible then. I wonder if I have never had full capacity in my lungs since birth. I have read that when first born those first yells of breathe are what starts the lungs working and if not strong then they may never be. My pulmonary doctor says that is possible - but I will never know. He believes I have had bronchiectasis for along time. I have been diagnosed with asthma about 25 years ago and have had many, many flare-ups over the years which have probably all slowly damaged my lungs.Thanks.

Hi Barbie, luckily my pulmonary doctor is also an NTM specialist so he is familiar with bronchiectasis. That's too bad about your breathing capacity always being very low. I wonder why? Maybe from the asthma? Even when they said I had asthma (which they then said I didn't have at National Jewish) my breathing capacity was up in the high 90's so I guess I am lucky. I just always wheezed but I think that was probably from the undiagnosed bronchiectasis although I had had xrays that showed nothing until the cavitary lesion showed up beginning of last year during a pneumonia check. Then the fun began and I joined the group of damaged lungs folks (sarcasm here).