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Bronchiectasis: Understanding symptoms

Posted by tshubby @tshubby, Jan 8, 2018

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

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

pacathy | @pacathy | 4 days ago

Here’s another thread on travel nebs.
https://connect.mayoclinic.org/discussion/travel-nebulizer-4/
Note I haven’t used these. My doc Ok’d using albuterol inhaler for travel and other than 7% saline, it’s my only med.
My first nebulizer was an Omron. It was cheap and small enough to take on trips, but it took about 20” for albuterol and couldn’t do the saline.
Have you discussed with doc? Is there an inhaler you could use?

REPLY
wolfplanetzero | @wolfplanetzero | 4 days ago
In reply to @raybo "Hi - my name is Ray. I too have been diagnosed with Bronchiectasis. I have a..." + (show)
@raybo

Hi - my name is Ray. I too have been diagnosed with Bronchiectasis. I have a good team of Pulmonary specialists at Concord Hospital / Laconia NH. I have a regimen of liquid form meds for my at home nebulizer - Ipratropium Bromide / Albuterol Sulfate, Budesonide and Acetylcysteine. I only take the Albuterol in the morning or midday because it gets me hyper - like drinking large amounts of coffee. At the Pulmonologists recommendation, Budesonide is my go to medicine and does not make me hyper. It gets me expelling somewhat but I can cough up lots of gelatanous green gunk in the morning before inhaling anything. Its the Acetylcysteine that really gets me expelling but I typically use late in the day or early evening. I'm also on low dose of Azithromyacin on odd days [M-W-F]. Kind of a maintenance dosage. So my attacks come in cycles - early AM, noon and again late afternoon. The late ones are vicious at times. It can cause me to pull over if driving, Coughing so hard that my throat hurts and I get raspy, I can get very light headed, chest hurts but in particular my lower right lung. It can incpacitate me for 5 - 10 minutes while I recover. I tried to combat this with portable nebulizers but the quality of them is marginal at best. I am now looking for yet another one. Are there any reputable organizations that really test these things? Its not uncommon for them to die after a few weeks - good luck on support!

Finding this group is a life important event. I live in what can be described as a frigid area for 3 - 4 months out of the year [like now]. Nobody ever mentioned that the cold can have an impact. I felt relief almost immediately upon coming inside today from walking the dogs. I regulate my temp at 68 and most importantly - I regulate my humidity at 38% - 42% in the winter. I just thought the cold was normal for anyone. Its all making sense now.

I'm retired but volunteer at a homeless shelter. I try to keep my distance to avoid transferable sickness - it rarely works. When you are surrounded by 40+ people in from the streets during mealtime it is impossible. I run the kitchen breakfast program. I find myself having to go home to use my nebulizer to help my breathing and within 30 minutes I'm coughing out a lot of gunk and then return. I try to step outside to get some air periodically. What I really need is a portable nebulizer that just flat out works - dependably. I welcome suggestions. I am boarding a plane in a month and want to have one with me as the air becomes very stale.

I guess the best way to describe Bronchiectasis for me is that it is very random and can set upon me with little predictability. OK - enough from me. Thank you - Ray

Jump to this post

I've had good luck with the Devilbiss Traveler portable nebulizer, though the battery charge only lasts for about 2-3 treatments. Have had it for about a year, without any issues.

REPLY
pacathy | @pacathy | 3 days ago
In reply to @raybo "Hi - my name is Ray. I too have been diagnosed with Bronchiectasis. I have a..." + (show)
@raybo

Hi - my name is Ray. I too have been diagnosed with Bronchiectasis. I have a good team of Pulmonary specialists at Concord Hospital / Laconia NH. I have a regimen of liquid form meds for my at home nebulizer - Ipratropium Bromide / Albuterol Sulfate, Budesonide and Acetylcysteine. I only take the Albuterol in the morning or midday because it gets me hyper - like drinking large amounts of coffee. At the Pulmonologists recommendation, Budesonide is my go to medicine and does not make me hyper. It gets me expelling somewhat but I can cough up lots of gelatanous green gunk in the morning before inhaling anything. Its the Acetylcysteine that really gets me expelling but I typically use late in the day or early evening. I'm also on low dose of Azithromyacin on odd days [M-W-F]. Kind of a maintenance dosage. So my attacks come in cycles - early AM, noon and again late afternoon. The late ones are vicious at times. It can cause me to pull over if driving, Coughing so hard that my throat hurts and I get raspy, I can get very light headed, chest hurts but in particular my lower right lung. It can incpacitate me for 5 - 10 minutes while I recover. I tried to combat this with portable nebulizers but the quality of them is marginal at best. I am now looking for yet another one. Are there any reputable organizations that really test these things? Its not uncommon for them to die after a few weeks - good luck on support!

Finding this group is a life important event. I live in what can be described as a frigid area for 3 - 4 months out of the year [like now]. Nobody ever mentioned that the cold can have an impact. I felt relief almost immediately upon coming inside today from walking the dogs. I regulate my temp at 68 and most importantly - I regulate my humidity at 38% - 42% in the winter. I just thought the cold was normal for anyone. Its all making sense now.

I'm retired but volunteer at a homeless shelter. I try to keep my distance to avoid transferable sickness - it rarely works. When you are surrounded by 40+ people in from the streets during mealtime it is impossible. I run the kitchen breakfast program. I find myself having to go home to use my nebulizer to help my breathing and within 30 minutes I'm coughing out a lot of gunk and then return. I try to step outside to get some air periodically. What I really need is a portable nebulizer that just flat out works - dependably. I welcome suggestions. I am boarding a plane in a month and want to have one with me as the air becomes very stale.

I guess the best way to describe Bronchiectasis for me is that it is very random and can set upon me with little predictability. OK - enough from me. Thank you - Ray

Jump to this post

I should have asked if you’re doing airway clearance with an Aerobika or Accapella device. If your doc approves 7% saline, that gets the mucus out, too. Most members report airway clearance to get a lot of mucus out on a schedule decreases unexpected coughing.

Here’s a video by one of bronchiectasis experts.
https://connect.mayoclinic.org/discussion/listen-to-dr-pj-mcshanes-recent-talk-on-airway-clearance/

REPLY
Christine | @thisoldewe | 7 hours ago

Hi @tshubby
Well Done to you both for being so pro-active to find excellent medical care! Accomplishing this has put you both in a place of knowing you are getting the best care possible. It doesn't remove the anxieties, but gives strength in knowing you have the best 'defenders' in your camp.
An excellent specialist will listen to all of these frightening concerns and 'get busy'. He/she will lay out the 'plan' of how to proceed. A good doc will not "stay in their own department', but bring in all of the needed specialists, tests, with explanations of where you are and what to expect. Having direction is so stabilizing.
This coming week you will go on your journey towards answers.
Will be thinking of you both as you 'go forth'. Plz let us know how you get on.
All the best to you both.

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