health at diagnosis

Posted by ann0616 @ann0616, Mar 14, 2019

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@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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@nannette

@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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@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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@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 I also hate the wedge pillow and I think sometimes it makes me worse now(seemed ok the first few years) as my position maby puts pressure on my sphincter stomach muscle and the acid comes up. My GERD comes, stays for along time then goes, not sure why, but I hate it! I also feel very tired with the reflux more short of breath, its nasty.

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@alleycatkate

@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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@alleycatkate Ha! I would have loved to have seen all 14 of your cats in your bed! And yes, you have a very tolerant husband.

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@ann0616 Ann, I think the majority of us in this group has MAC/Bronchiectasis brought on by acid refux/gerd. It is a common cause of bronchiectasis. Just follow the guidelines for dealing with the reflux. One thing that really helps me to avoid reflux is eating smaller amounts of food at a sitting. It is better to eat five small meals a day, or add in a heavy snack to suppliment a smaller quantity at dinner and lunch. Have you tried this already?

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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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I too was advised by my pulmonologist to stop nebulizing the 7% saline as I wasn’t coughing and and I had recurring hemoptysis. He did say to keep it available if I need it down the road! He thought it was drying me out too much.

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Hi Ann, I too have everything you mentioned as well as atrial fibrillation and sleep apnea. I sleep on a wedge for the acid reflux and cannot get used to a cpap. My pulmonary doc has prescribed a vest that is used mostly by cystic fibrosis patients. Tho I have yet to be fitted for it, I understand that it acts like the aerobika on a larger scale and helps to clear the mucus. I have a lot of mucus and have trouble clearing it. I am not able to take the usual antibiotic cocktail that many are prescribed due to interaction with my many heart meds. And I am not able to have an ablation to control my afib due to the amount of mucus and the length of time I would need to be intubated. It all seems like a catch 22 to me. All I can do at this point is try to follow the anti acid diet, sleep on the wedge, drink lots of water, not eat after 4 in the afternoon and use the aerobika and shakey vest. I have reduced my work hours to part time and I am still exhausted. It has helped me to hear what others who have this diagnosis are doing to cope and what their docs are telling them about it.

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@windwalker

@ann0616 Ann, I think the majority of us in this group has MAC/Bronchiectasis brought on by acid refux/gerd. It is a common cause of bronchiectasis. Just follow the guidelines for dealing with the reflux. One thing that really helps me to avoid reflux is eating smaller amounts of food at a sitting. It is better to eat five small meals a day, or add in a heavy snack to suppliment a smaller quantity at dinner and lunch. Have you tried this already?

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@windwalker Terri, I take medication for reflux and do watch what I eat. My reflux is very manageable with the med but I do watch what I eat and do not eat heavy meals.

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