health at diagnosis

Posted by ann0616 @ann0616, Thu, Mar 14 7:28am

I’m curious if anyone in the group was diagnosed with bronchiectasis and had no problems at diagnosis. I have asthma, acid reflux and had a bad case of pneumonia two years ago. I also had whooping cough ten years ago. Other than that I dread getting colds because I cough forever, but nothing other than that. I had cultures taken at diagnosis and they all came back negative. I had breathing function tests which all came back pretty good for someone with asthma. The only reason bronchiectasis was caught was because I had a CT scan for a spot they saw on my lung. I went to pulmonary and they want to do another CT at six months and if there is no change it will be once a year. Is this just a ticking time bomb for me? I feel like I am waiting for something to happen and sometimes even wonder if I was diagnosed incorrectly. I read the boards and don’t see anyone here that had this disease start like mine. I see your struggles and take it all in for what might come down the road. Thanks for your thoughts.

Liked by noahs

How did they diagnose you? Sputum tests? Bronchoscopy? How were the "cultures" taken? You have several issues that could make your lungs vulnerable I would think. I didn't have anything but a thyroid issue when I was diagnosed with MAC. Within 2 months it created a hole/cavity in my upper left lobe of my lung that was 10 cm big.

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@ann0616 My diagnosis of bronchiectasis came out of the blue. I had an abdominal CT scan to look for pancreatic cancer (had breast cancer in 2016) and luckily no cancer, but they noted the bronchiectasis. An MRI and high-resolution CT scan confirmed the bronchiectasis and mucous plugging with suspected MAI. I was surprised because I had no symptoms that many describe and was referred to a pulmonologist. My pulmonary function studies were normal. Instead of a series of sputum cultures, I was sent for bronchoscopy and I am still waiting for the results of that in about 3 more weeks. The only lung problems I recall are occasional colds that lead to bronchitis. No asthma or pneumonia problems. My pulmonologist discussed with me the antibiotic treatment if results are positive versus repeat CT scans if negative. I hope this helps. Great for you that your cultures are negative!! I work out as much as I can but my diet is not that good, so looking to make some adjustments..

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They diagnosed me from CT scan. Sputum tests were done and negative. The cultures were taken by me. They gave me three vials to use on three separate days.

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@ann0616 Hi Ann –
Everyone on this site has had a different experience, and is ill or well to a different degree. Here is my story
I was diagnosed due to a severe lingering case of pneumonia & cough that were originally treated as uncontrolled asthma, a chest x-ray showed "something suspicious" and the follow-up CT confirmed bronchiectasis & showed spots. The sputum cultures (taken by me as you described) showed first pseudomonas, then MAC. Based on how long I was ill, this had probably been growing for about 2 years – I was basically existing on the sofa, and coughing all day & night for over 6 months.
My daughter (under 40) was suffering from repeated sinus infections & intractable asthma exacerbations – when her docs heard about her Dad & me both having bronchiectasis, she was tested & also has it. (So did my Mom, and I have a brother with it.) She is otherwise healthy & strong – a fitness & adventure "junkie" – but all her life, a simple cold has been a gateway to weeks, if not months, of coughing & illness. Which describes both Mom & me to a T. My husband is asymptomatic & feels fine as long as he uses his long-acting inhaler. The doc believes his bronch is from rheumatoid arthritis. Our University is now studying her & will be looking at the rest of us, trying to find a genetic link.
I am heading into month 8 of the "big 3" antibiotics, and other than side effects from those and fatigue, and periodic shortness of breath, feel fine much of the time. As soon as I get the "elephant on my chest" feeling, I step up my breathing treatments & try to get extra rest. Based on my Mom's experience, I expect this will gradually get worse, but she lived to 84 and died of something else, so I just keep "living my life."

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How are the antibiotic working and which ones are you taking. Hope all works out for you.

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@poppins

How are the antibiotic working and which ones are you taking. Hope all works out for you.

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Taking clarithromycin, rifampin and ethambutol. Cough and chest pain gone. Sputum samples in December came back mixed, one clear, the other with minimal MAC. Bloodwork, eye and hearing tests are all OK. Side effects are manageable. Followup CT and all other tests scheduled in April, so I'm hoping things still improving.

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Thank you. Keep us informed please, it helps to know how other are coping.

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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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@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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@migizii my diagnosis came about after getting sick and doctors not being able to find answers for about 9 months. I was diagnosed with mild bronchiectasis with follow up in 6 months and prescribed one to two times daily respiratory therapy. At my follow up appointment, it turned out the illness had jumped to my other lung and my doctor ordered sputum tests that revealed some bacteria that he said we would treat with twice daily respiratory therapy at this point. I don’t get sick or cough very often and rarely produce phlegm. However, like you, I feel like I never know what’s going to happen next. My next appointment is due in May or June, so I’ll see what’s changed (if anything) then.

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@nannette

@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

Liked by america

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@alleycatkate

@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, @nannette I am guilty of sleeping with two pillows and I do contort my body due to my little dog hogging the bed. I am actually more comfortable in a contorted position. LOL. I too refrain from food and drink 3 hrs prior to bedtime and haven't had a burning esophagus in years. I hope I am not having the silent reflux.

Liked by alleycatkate

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@ginak

@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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@shooei

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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@shooei Thanks for the suggestion. Thankfully I haven’t had the hemoptysis since 2016 after having the nodule removed. But it’s certainly something I want to avoid ever having again. My general pulmonary Dr was reluctant to give me the 3%. I’ll see what my NTM Dr says next time I see him. It will give me something to discuss with him. Thanks again.

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@alleycatkate

@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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