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Bronchiectasis: Understanding symptoms
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
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John this site is a treasure trove. If one had to shell out cash for all the info available here it would be a fortune. Don
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2 Reactions@colleenyoung -- Hi Colleen! I just wanted to share with you something. The video you attached shows Dr. Anne O'Donnell -- She is my Pulmonologist at Georgetown Hospital. She follows me for Bronchiectasis and maybe now for the nodule that was found. She is a great and very caring doctor!
--Dee
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2 Reactions@lindsey0918 You are echoing what many of us have experienced with bronchiectasis. Years of unexplained illness and misdiagnosis or none at all...then we hit on the right doc. Then fear when you get the diagnosis and start reading about it. Trust what people here are saying to you - it is chronic and incurable but manageable. I would call it a "life sentence" as opposed to a "death sentence"
Who diagnosed you, and what tests have been done? What if any specific treatment are you doing?
The NTM infections that come to those of us with lung issues are difficult to diagnose and even moreso to treat successfully. If you have access to Mayo or National Jewish health, they are the best, but there are docs all over the country who can treat you effectively. Just let us know where you are and you'll get recommendations.
Also, there are ways to manage bronchiectasis to live better- probably as many different treatment plans as there are people in this group. You will need to work with your doctor to figure out what works for you.
First of all, if you are chronically feeling ill, they need to culture your sputum to see if your lungs are infected with NTM or MAC and pseudomonas or other bacteria. Bronchiectasis makes you susceptible to these. A blood test or chest xray is not enough- they need to find the infectious organism using a sputum culture that takes time to grow in a special lab, and test to see which antibiotics will kill it.
Then, if you are infected, you and they need to decide on a combination of antibiotics and/ or other treatments. Not everyone needs or can tolerate long term multi antibiotic therapy.
A number of people here are using nebulizer 7% saline solution with or instead of antibiotics. In my case, 18 months of 3 drug therapy didn't cure the MAC infection and I was quite ill from the meds, so we stopped. I will find out in April whether saline is enough to keep it from regrowing in my lungs to the point where I am getting cavities again. Other than my routine asthma meds and a mucus thinner the neb to keep me coughing is my current treatment. After 2 months my stomach and intestines are beginning to heal, I'm starting to sleep better and I have a little energy, but still no appetite. I hope I never have to do the drug routine again but someday I probably will.
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2 ReactionsJohn I agree with you about the value of this site. I just recently found this site and have learned more by reading here than I have from all the doctors I have seen in the past 3 years for a chronic cough. I was diagnosed with Brochiectasis in 2019 after 3 years of a chronic productive cough. I have been treated by an allergist, sinus specialist and finally a pulmonologist. I live in San Jose California and receive my medicare health care from Kaiser Permanente. I would love to get to the Mayo Clinic but would not be covered by my health plan.
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3 ReactionsI’m so sorry to hear of your struggles. I have always struggled with bringing up mucus until my pulmonologist put my on a vibrating vest to assist. This has helped, although at times I still have some challenges. From what you have shared, I would be choosing to seek another opinion as this illness is challenging and not well known, which I feel requires the most knowledgeable medical personnel one can find. There may or may not be better answers, but I hope there can be better answers for you.
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1 ReactionI have recently been dx with small airways disease or inflammation of the small airways. I had started coughing about a yr ago and noticed this but with covid shutting us down did not go to pulmonary dr. In July 2020 I had covid with pneumonia. i had a ct scan in oct that showed the small airways disease. i cough and clear throat constantly. is there anything i can do for this i believe this the beginning of bronchiectasis. my brother has this and is in his last stages. is there any certain foods i should avoid.
Welcome to Mayo Connect. We are a community of people living with a wide variety of conditions, who share our experiences and help each other on our journeys. We are not, medical professionals so we cannot provide diagnosis or medical advice, we merely share our successes, failures and suggestions.
I invite to take a look at the many posts and discussions in our Lung Health group (https://connect.mayoclinic.org/group/lung-conditions/tab/discussions/) and the MAC & Bronchiectasis group (https://connect.mayoclinic.org/group/mac-bronchiectasis/) to connect with people who have symptoms like yours.
"Small airways disease", if I understand it correctly, is a non-specific diagnosis that says "there is something wrong but it's not asthma, COPD, etc..." While there may be some tendency for people in the same family to develop bronchiectasis due to genetic similarities and common underlying conditions, it is not considered a hereditary disease, so please don't assume you have it without specific diagnosis. It has its own characteristics on imaging, and can be diagnosed specifically by an experienced radiologist or pulmonologist, and even by some primary care practitioners.
It is a really good idea to get a more specific diagnosis and prognosis, based on your personal medical history, underlying conditions, overall health and age. This is especially important since you had Covid pneumonia, which carries its own set of long-term symptoms, and as-yet incompletely understood risks.
Have you made an appointment to see a pulmonologist for a more specific diagnosis? Do you have access to a pulmonologist through your regular physician, or a specialty practice in your area?
In the meantime, it would be premature for anyone to offer advice beyond a healthy diet, exercise as tolerated, and adequate rest. Let us know what you find out.
Sue
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1 ReactionJohn, I have had Chronic Bronchiectasis most of my life. I struggled hard with it for 8 decades. About 2 years ago I discovered that Mayo had categorized this as being a nearly 100% certainty of Amyloidosis, especially Gelsolin, GSN or AGEL, or Finnish Amyloidosis. Since I know I have both GSN and FKTN (Fukutin Limb Girdle Muscular Dystrophy) I agree with them. There is no way to cure it, just do the palliative thing with sprays and stuff. For other info, go to http://www.omim.org/entry/GSN or Bronchiectasis. I am much more at piece after Sequencing.com did my genome analysis for me. Nebula or others could do the same thing.