Myrnie

Myrnie

Sick today....flulike.  Using nebulizer and in courage machine and vwst

2 years ago

ksuzanne

ksuzanne

Hi to all the Zebra's here! It is late so I am just posting a quickie to say thanks for the responses to my questions.I'm going back to the posts individually to reply but don't expect to "see" anyone til morning.
I didn't feel too bad today, which is a good thing, because suddenly I became very busy. I have been selling some things online, and as some of you may know, this requires sitting around a lot staring at the computer or phone until, BAM! suddenly the messenger window and emails light up. This means I'm doing 20 things at once so I can meet one person with their item, then get to the post office to mail the other items before they close--and I am not good at multi-tasking like I once was.  During this sudden flurry of activity, I had to be mindful of my lungs and my tendency toward exercise induced asthma so I really had to pace myself and not give in to the adrenalin rush on this prednisone. I think I did a pretty good job as there were only a few wheezes here and there, and standing in line at the post office and drug store gave me some time to recover.


With that, hope everyone had an equally good day and you are all breathing easy tonight⛺
Kerie

2 years ago

Gretchen

Gretchenanswered the question Anyone using PALL Med filters on shower or taps?

Loopy, here is some information that may be helpful with the filters: When considering the use of a Pall QPoint point-of-use filter (this is the 62 day version) please note that following: The shower filter is easiest to install at the end of a hose. …
Ksmiles123KKLoopy also answered the question Ksmiles123and 2 others also answered the question

2 years ago

Kandy

Kandyanswered the question anyone on nebulized mucomyst?

I have been the 20% 1 or 2 times a day. I do alternate with 7% sodium chloride. Both are good.

2 years ago

ksuzanne

ksuzanneasked the question: Anyone treated with augmentin antibiotic?

Anyone found it to be helpful? I'm done with it but really didn't seem to help other than mucus is clear now. Shortly after taking my dose I seemed to get more throat and sinus inflammation. My doc prescribed this along with pred for a sinus infection …

2 years ago

ksuzanne

ksuzanneasked the question: anyone on nebulized mucomyst?

Wondering if anyone nebs mucomyst and if you think it helps. I feel it makes me more sob. Dehydration?

2 years ago

ksuzanne

ksuzanne

Hi all, Third time I've tried to post an intro.--guess I have fat fingers.  been meaning to come over from copd 360 for a while.  Bronchiectasis was reported on my ct scan this past spring. I've been in continuous"COPD" exacerbation since may 2018.  I see pcp, pulmo, allergist, and gastro.  Had a endoscopy and dx gerd, esophagitis.  A bout of relfux may have triggered this whole scenero.  I've been treated for lung infections at least every month to every other month.  When I mention sputum cultures to rule out mac, pseudo m's aspergillosis i'm told to not look for zebras and that I will have to have a broncoscopy to rule out.  last appt with pcp i had lingering sinus pain and pressure and wheezing in my upper airway after a round of pred and antibiotics for pnuemonia.  The doc said I didnt look sick but reminded me I have COPD and that I'm depressed and have anxiety. He wasn't going to further treat the respitory problems with another antibiotic then wrote me a scrip for an antidepressant.  I took it as it may come in handy, but being on pred all the time im sure has caused a lot of drug induced anxiety.  I would like to not be depressed about my situation, but adding a med that takes a while to work and will complicate the diagnostic picture with side effects--especially dehydration, is not the route I want to take for the moment.  Oh, yes, I have high eosinophils from time to time depending on whether im on pred or not
I know from all the information available from the 360 sites that dx and a good treatemnt plan for this condition can be hard to come by. I live in a small rural town but the docs are under the umbrella of the cleveland clinic. Geez, give me a break, lol,  very frustrating as I know my lungs are being damaged the more this goes on! Anyway thanks for reading

2 years ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Ksmiles123Yes, 2nd opinions are so important if you do not feel as if you are getting your questions answered or treatment regime in a timely manner.2 years ago
  • Ksmiles123Kristen,
    Hello! I agree wholeheartedly!  Many doctors just assume the fatigue is due to the age bracket, pre menopausal, menopausal or post menopausal.   I was so tired before I was a accurately diagnosed - pmd jumped on writing me an anti depressants; I refused and continued to probe into the etiology of my fatigue.2 years ago
  • Susan Bee
    Anyone taking clofazimine?
    2 years ago
Lvo

Lvo

Hi everyone - new to this site!  For the last 8 years when I get cold symptoms, they turn into pneumonia.  I  was diagnosed with “minor” Bronchiectasis and MAC 2 years ago, but my doctor feels that isnt causing the pneumonia.  My pneumonia is hard to diagnose as it is never audible, it shows up early in a ct scan, but doesn’t show up in a chest X-ray until pretty advanced.   In 2015,  I had pneumonia that got so advanced before anyone could diagnose it that I ended up in the hospital for 3 days.  I’ve been in emergency 3 times since then with pneumonia.  I have alpha-1-Antitrypsin deficiency (carrier), but doctors don’t think that is a factor; other immunology tests don’t show anything alarming.  Instances of pneumonia were once a year early on, but have increased in frequency to every 3 or 4 months this past year.   I had asthma as a kid (got allergy shots for 10 years) and had frequent colds with sinus infections and swollen glands.  I have also been on allergy shots for the last 25 years... my allergist made me take a break from the shots every 8 years or so, but as soon as I stopped the shots, I would start getting sick frequently.  This September, I had a follow up ct scan, and was shocked to hear that the scan indicated pneumonia even though I had no cold symptoms at that time.   My doctor has been reluctant (as have I) to put me on the year of antibiotics so far as he has felt the MAC is too minor to warrant the potential negative side effects of the antibiotics...  I have a severe cold with sinus infection and lung tightness this week - waiting to see if the chest X-ray shows pneumonia.  Will see my doctor next week to discuss further.
if any of you have similar issues with recurring pneumonia, I would sure like to hear from you!  

2 years ago

  • NewestOldestClick to View All Comments21 comment(s)
  • Ksmiles123Kandy 
    Hello! I am glad that your doctor will monitor Barrett’s closely; a friend has Barrett’s for awhile and seems to be doing ok.2 years ago
  • KandyI was told I have silent gerd.  I have no symptoms that is why I was so surprised with the Barrets diagnoses.2 years ago
  • Ksmiles123Yes, many have the silent gerd.  It is so important to follow the anti reflux guidelines.2 years ago
Ksmiles123

Ksmiles123Hello! Below is a link on pseudomonas :https://www.webmd.com/a-to-z-guides/pseudomonas-infection

2 years ago

Kandy

Kandy

2 years ago

Kandy

Kandy

2 years ago

suze

suzeasked the question: Top Centers for MAI Treatment?

Hi I was recently diagnosed with MAI And live in a rural area...Two Pulmonologist’s that I’ve traveled to have said not to seek treatment because of side effects...Now a third says that I should get treatment....Where are the top places to go for …

2 years ago

Ksmiles123

Ksmiles123

Hello! How are you doing today after a long holiday weekend?   Cold weather is upon .  Do you have any diversional hobbies that you do while indoors?

2 years ago

Gumby

Gumbyanswered the question Hypervolt instead of a Vest or chest PT?

So cool! When I was a child they would use something similar on me for my CPT at Children's Hospital. :)
KandyKsmiles123 also answered the question Kandyand 1 other also answered the question

2 years ago

Ksmiles123

Ksmiles123

Hello! I hope that you are attempting to make the best of this day, despite the medical challenges we face.  I am grateful for this site and all of you.  None of us are alone on this journey, one day at a time. 

2 years ago

Myrnie

Myrnie

Glad to find this group. Happy thanksgiving. I use an air clearance machine and a nebulizer twice daily, avoiding the tough antibiotic treatment but not for sure how long.  We have an outdoor hot tub.  Has anyone heard of a hot tub being problematic?  Myrnie

2 years ago

Tightlines1

Tightlines1

😀
Hello, I am wondering if you all can help me out on more information on bronchiectasis ? I have severe persistent chronic allergy asthma type II and mild COPD. I need to get factual information that my allergy asthma or COPD is the cause of my bronchiectasis? Can anyone please help me where I can get the research information please? I have EOSINOPHILS and my allergy test was super high! (0-100), and my results were 711 , I’m allergic to mold, dust mites, grass and pretty much everything that is green! Lol.  Tress, grass etc..  I really appreciate and thank you.  Ed 

2 years ago

Tightlines1

Tightlines1

😁
Going fishing in a couple hours, don’t sleep to well.  

2 years ago

michebre

michebre

Hi I am looking for a support group in Tucson, AZ. My wife has MAC and Bronchiectasis and is enduring the 1.5 year treatment. At the moment we have little emotional support and I am looking for a support group we both can attend.


Any suggestions would be greatly appreciated.


Thank you,
Michaebre

2 years ago

Gumby

Gumby

Hi there!  Newbie here.  I am 44 years old...DX with Bronchiectasis at age 16 years.   My limited knowledge throughout the years is my lungs are "damaged."  Excited to join a community as it is hard to find support or others with Bronchiectasis.  I do not know another single person with Bronchiectasis.😀

2 years ago

Gretchen

Gretchen

What are your Thanksgiving plans? We know with chronic illnesses it is not just burn out that you feel but possible true exhaustion. Protect your energy during this busy time of year. It is ok to say no thank you and take care of you. Gratitude all around this season.

2 years ago

madepramana

madepramana

Hello.. Sorry to inform you that I am currently being hospitalized. I went to the ER on last Friday because of high fever. My cough was getting worse too. Hard to describe it since I already went to a pulmonologist (private practice) twice previously but it were not effective I think.
Currently having antibiotics, antifungal, dexamethasone intravenously and also combivent through nebulizer.
The fever already subsided, it’s normal now. I am using oxygen 2 LPM. It is a little bit tiring for me when the doctor can’t give a clear explanation. I asked about hypertonic saline NaCl 3% nebulization but he will only give the isotonic one (0,9%). I’m being reluctant to ask my concern to him.
But at the moment I just need to take a rest and enjoy the hospital bed. Thank you so much for listening. I will keep informing my condition.

2 years ago

Dinah

Dinah

I would like to know if any of you with bronchiectasis have found certain foods that you should avoid?  For instance someone has told me I need to cut out all dairy and cheese products as they thicken mucous.  Any thoughts on diet for someone with bronchiectasis?
Dianh

2 years ago

Ksmiles123

Ksmiles123

Hello! Do you check drug interactions?  The link below is an easy way to double check that your meds don’t interact in a negative way.
Drugs.com/drug interactions.html



2 years ago

Tracer

Tracer

I have looked into  UV filtration with micron filtration unit placed at waterline point of entry. Has anyone done this? Has anyone else done this and does this in fact kill NTM bacteria?

2 years ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.



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