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Jan 12, 2018 · Bronchiectasis: Understanding symptoms in MAC & Bronchiectasis

Hello again. Many, many thanks for all the responses to my post. The insights shared were very valuable and greatly appreciated. I can’t reiterate enough how comforting it has been to find this forum and the caring people who share their knowledge and experiences.

A quick update on our visit to the pulmonologist. He took a look at the recent CT scans & x-rays and compared them to CT scans from 1 and 3 years ago and it appears that T’s bronchietctasis may have worsened some but that it will be hard to be sure until her current case of pneumonia is cleared, thus confirming that the most recent CT scan report (with alarming references to lung cancer) was not accurate. It was written by a radiologist who is unaware of T’s history and her bronchiectasis. We were advised by our Dr. to only have tests done and evaluated (if possible) by those who are knowledgeable about her condition in particular and bronchiectasis specifically. So on the one hand we were relieved, but on the other we know that we still have a serious disease to deal with.

We did a sputum test and we’re scheduled for another CT and lung function test in 8 weeks. We were given a new 14 day course of antibiotics to target the pneumonia and some great advice to take it before bed to hopefully sleep through the stomach upset that the last courses had caused. She’ll also be taking extra strength mucinex to help get the mucus out. We feel much better about our level of understanding of all this and are hopeful that a more proactive approach on our part will benefit us. Being in this group is a big part of being proactive.

Next steps are identifying the bug and seeing how the next CT and lung function tests look. Again, we have a long way to go but we are so happy to know there are resources out there to help us along the way.

Thanks again to all and I hope everyone has a happy weekend!

John

Jan 8, 2018 · Bronchiectasis: Understanding symptoms in MAC & Bronchiectasis

Hello everyone. I am so glad to have found this group with so many knowledgable and caring members who know about bronchiectasis. My name is John and I am T’s hubby (hence the username). T was diagnosed in 2014 with bronchiectasis. A bit more about T, she is a 51 year old never smoker. She also has a DX of long qt syndrome which is a heart rhythm condition that can cause chaotic and rapid heartbeat and other serious complications. Otherwise she is healthy. She exercises (walks 3+ mile regularly, is not overweight, does not drink, eats well, etc.). She is a elementary school teacher and is in contact with lots of sick kids. She does have significant allergies and she tends to have extra sensitivity to extreme temperature changes. The first blasts of winter tend to knock her out for a couple days annually.

When T was first diagnosed with bronchiectasis we actually breathed a sigh of relief thinking that she actually had lung cancer. Our local hospital did a CT scan that showed nodules and then a PET scan lit up in a way that can be consistent with cancer. After switching to more knowledgable medical team at a leading university hospital with a top lung center, we found out that it was actually bronchiectasis. Have others here had similar “false positive” experiences?

Anyway, fast forward to today and she is having more trouble. She was diagnosed w/ pneumonia around Thanksgiving, was put on a 10 day course of antibiotics. During this time she was also having pain in her back on one side and she has been losing weight (~30 pounds over ~3 months). She has had two incidents (about 3 weeks apart) of coughing up blood. The 10 day antibiotic course seemed to work even though she was miserable while on it due to stomach side affects. Nevertheless, she seemed back to normal. Then she went on a day long field trip with our daughter that required walking outdoors in very cold temps (December in the north east) for between 5-10 miles. It was after this that she began to feel bad again. All the same symptoms came back. She has had a another chest X-ray that looked like the one leading to the pneumonia DX as well as a CT scan that showed “masses” consistent with differential diagnoses of pnuemonitus and lung cancer. The doctor who ordered the CT is not her specialist (pulmonologist) and the radiologist who wrote the CT report does not know of her bronchiectasis diagnoses.

We have an appt this week with her pulmonologist (we have to drive couple hours to a different city to see him which is why the distinction between “local” doctors and her specialist who knows her full history). Despite the previous false positive and the similarities seen in CT scans, we are still nervous that we’ll hear that this is not “just” bronchiectasis (not to discount the seriousness of bronchiectasis one bit). The thought of lung cancer is never far from our minds.

My question has to do with a couple other troubling things that have happened recently. She had a mental lapse recently in calculating a tip at a restaurant that resulted in a very nice Christmas present to the server. Such a nice gift that this was definitely NOT intentional so she is worried about cognitive function. Did I mention that we’re both VERY stressed? Maybe that is a factor. The other incident had to do with urinary incontinence. This only happened once but it was very troubling to her, needless to say. It was as if her brain was unable to communicate to her body in a way that normally allows one to hold it.

Even though we know she has bronchiectasis, we are quite worried about: the blood coughing incidents, the weight loss, the back pain, the masses in the CT scan, something called “cavitation” also noted in the CT, the mental lapse and the incontinence. We see the specialist this week and will share all these concerns but I was hopeful that by sharing our story here that someone may have had similar experiences / insights into what we are seeing.

Many thanks in advance to all for your thoughts. And thanks for such great forum!

John