health at diagnosis

@ann0616 Hi Anne, I was totally asymptomatic when I was diagnosed. Had gone in for a routine breast MRI because breast cancer runs in my family and the radiologist (a very good one, I might add) said he thought he saw what was bronchiectasis and advised me to get a CT scan which I did. Sure enough, I had bronchiectasis and then my pulmonologist looked at me and said I bet you have Lady WIndermere's Syndrome (or MAC) and I was like a deer in headlights. So since I had no cough he did a bronchoscopy and sure enough I had MAC. I have had acid reflux for many years and he believes the acid reflux aspirated into my lungs because I was a stomach sleeper and that's how it all started. So I did the big three for 12 months. This was April of 2016. Then in February of 2018 I got the bad flu, really bad, and got a cough that was horrendous and I still have it a year later which I believe is because of the bronchiectasis. I went for another bronchoscopy about two or three weeks ago because a new specialist I go to wanted to see if he could find anything that could be causing the cough and also test for MAC at the same time. I have another few weeks before I get the tests back so we'll see. I hate sleeping on the wedge I had to buy so now I sleep on three or four pillows. I do the 7% saline solution once a day which I think is the key to keeping the MAC at bay. I also use the aerobika once a day (but not everyday) and and do postural drainage. Nan

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@nannette Hi Nan. I see that you sleep on 3 or 4 pillows for acid reflux instead of a wedge. I told my second opinion Dr. at Mayo Clinic that I did the same thing and he said absolutely not to do that. He said that can contort/bend the body and put pressure on the abdomen that will aggravate and worsen the problem. I find the wedge makes a great difference over the pillows. That and not eating or drinking 3 hours before bed pretty much has eliminated the reflux for me. Sorry to say this as I read you hate the wedge. Perhaps give it another try? Kate

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@ann0616 I was also diagnosed from a CT scan. The not so short story is, I originally had a CT scan in 2013 because I had an X-ray to check my heart and it showed a shadow in my lung, so they sent me for the scan. I was told then by my pulmonary Dr that I just had nodules and we would just watch them. Three years later, I coughed up blood, which she said was due to a large nodule in my upper left lobe. I had surgery to remove the nodule and biopsy it. Good news – not cancer, but MAI. That’s when I started seeing a pulmonary Dr that specializes in NTMs and he told me I had bronchiectasis. I also, had no symptoms. I was originally told 10 years ago, that the throat clearing and cough I had was due to acid reflux. The specialist told me it’s the acid reflux that causes bronchiectasis which leads to NTM infections. I said “I wish I had been told that 10 years ago so I could have taken precautions”, and his answer was “they didn’t know that 10 years ago!” So now we know that, so, I sleep on a wedge, and try NOT to eat anything past 7:00, (or then I sit up for 5 hours). I hate to admit but, I’m not good at all about watching what I eat. I like to eat. I do lung clearance exercises (50 breaths, various positions and huff cough) twice a day with an Aerobika and I nebulize 3% saline once a day. Which I may ask him to up the % to 7 since that’s what most people on here seem to do. I have some shortness of breath, but my oxygen levels are always above 96% (that’s the lowest it’s ever been). So, I exercise, live my life, go away on vacation , and pray for the best for all of us.
Hope my story helps a little.
Gina

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Just a thought about the 7% saline. I have mild bronchiectasis, but I also seem to have the occasional hemoptysis like you, and my docs don't want me on the 7% because it is just a bit more irritating to the tissues and might cause the bleeding, especially in someone more prone to that anyway.

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@nannette Hi Nan. I see that you sleep on 3 or 4 pillows for acid reflux instead of a wedge. I told my second opinion Dr. at Mayo Clinic that I did the same thing and he said absolutely not to do that. He said that can contort/bend the body and put pressure on the abdomen that will aggravate and worsen the problem. I find the wedge makes a great difference over the pillows. That and not eating or drinking 3 hours before bed pretty much has eliminated the reflux for me. Sorry to say this as I read you hate the wedge. Perhaps give it another try? Kate

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@alleycatkate Kate, I should surely give it another try but it just seems to work for me better that way. I think I, like @windwalker, seem to be comfortable in a contorted position! Not really, but I seem comfortable that way. I think that my wedge that I had was just so big that I hated it. I might try another one. And I try not to eat or drink for the three hours before bedtime but I can't do it every time. I would get a partial failure in that department and I know that's not good but I sit pretty much straight up on nights that I cheat.

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@ann0616 Hi Anne, I was totally asymptomatic when I was diagnosed. Had gone in for a routine breast MRI because breast cancer runs in my family and the radiologist (a very good one, I might add) said he thought he saw what was bronchiectasis and advised me to get a CT scan which I did. Sure enough, I had bronchiectasis and then my pulmonologist looked at me and said I bet you have Lady WIndermere's Syndrome (or MAC) and I was like a deer in headlights. So since I had no cough he did a bronchoscopy and sure enough I had MAC. I have had acid reflux for many years and he believes the acid reflux aspirated into my lungs because I was a stomach sleeper and that's how it all started. So I did the big three for 12 months. This was April of 2016. Then in February of 2018 I got the bad flu, really bad, and got a cough that was horrendous and I still have it a year later which I believe is because of the bronchiectasis. I went for another bronchoscopy about two or three weeks ago because a new specialist I go to wanted to see if he could find anything that could be causing the cough and also test for MAC at the same time. I have another few weeks before I get the tests back so we'll see. I hate sleeping on the wedge I had to buy so now I sleep on three or four pillows. I do the 7% saline solution once a day which I think is the key to keeping the MAC at bay. I also use the aerobika once a day (but not everyday) and and do postural drainage. Nan

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@nannette, @windwalker Sleep is so important. On bad nights I was actually sitting straight up too. I was so happy to get
Dr Leventhal's directive on the Acid reflux…I had been to my GI Dr and he was just trying to push meds which I refused. This was such a simple solution that I almost did not believe that it would work as I had tried so many other approaches. I am thrilled that it has (along with cutting out trigger foods) Anyway, Nan, if you still have the reflux maybe you could try a lower wedge or maybe one of the memory foam ones might be more comfortable???…..Just a thought. Good luck! It is always a dance. Good health to you both! Kate
Windwalker….haha…the pet cuddling might just be the most important part of therapy in my opinion. You would have died laughing seeing my bed at one point with 14 cats roaming and cuddling during the night. (tolerant husband) Thankfully, I am down to 2 cats in the bedroom now.

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Just a thought about the 7% saline. I have mild bronchiectasis, but I also seem to have the occasional hemoptysis like you, and my docs don't want me on the 7% because it is just a bit more irritating to the tissues and might cause the bleeding, especially in someone more prone to that anyway.

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