Delia

DeliaEvent Alert!

NTM Info & Research is convening a webinar on Inhaled Hypertonic Saline on Friday, March 5th at 7pm ET.

Learn about inhaled hypertonic saline: how it is used for airway clearance, and the new research looking into the benefits of this adjunct therapy. Guest speaker will be Kevin L. Winthrop, MD, MPH, Professor of Public Health, Infectious Diseases, and Ophthalmology, Oregon Health & Science University.

Click the link below to register:

https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ehlvbkuc0b4f29ef&oseq=&c=&ch=

3 days ago

ChristinaH

ChristinaHWe want to hear from you! Every patientโ€™s journey with bronchiectasis and/or NTM is different. The COPD Foundation wants you to share your experiences with diagnosis and disease management in an effort to help others. Over the course of the next several weeks, we will be posting a series of questions to provide a space for you to share your experiences related to specific topics. Our first set of questions are related to the early symptoms that led you to seek diagnosis and confirmation of your diagnosis โ€“ click the link below to chime in! We encourage you to โ€œshare your storyโ€ so that fellow community members can learn from your experiences and gain knowledge on how to best manage their condition(s). Share-Learn-Live Better!
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Symptoms-and-Diagnosis




3 weeks ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Sunset,
    Hello! Welcome to the site. Yes, most people have never heard of NTM nor Bronchiectasis; hopefully, this site will give you some material which can assist you in explaining the diagnosis to others.  There are many relevant articles in the blog section. I havenโ€™t used nucala or fasenra. I hope that other members chime in.6 days ago
  • KandyHello Sunset welcome to the group!!6 days ago
  • laff4evrGreetings sunset556 days ago
CLKap๐ŸŒธ

CLKap๐ŸŒธ

Hi everyone! Hope youโ€™re doing well today. If you are able, please would you mind describing your side effects of  the 3 antibiotics treatments course through the year. For those who have gone through this. Did you feel well enough to go to work every day? Thanks for the support ๐Ÿ™๐Ÿ˜Š

7 hours ago

Ksmiles123

Ksmiles123Hello! Below is a listing of vaccinations information, by state:https://www.medpagetoday.com/infectiousdisease/covid19/90791?xid=nl_covidupdate_2021-02-25&eun=g1266965d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_022521&utm_term=NL_Gen_Int_Daily_News_Update

1 day ago

Crafty

Crafty

Hi,  my brother, who is 74, was diagnosed with Bronchiectasisandntm infection last March.  He is on Medicare and he has infusions twice a day at home.  He has just been told that Medicare will not cover the cost as long as he does this at home.  Apparently there are different types of infusion containers and the one that has to be used for his medications is not covered by Medicare at home.  I am just beginning this journey to help find a solution.  Does anyone know of someone with the same issue?  His monthly cost has jumped from a co-pay of $1,900 to over $4,000.  It seems to me that it would cost Medicare far more if my brother had to go to the hospital twice a day instead of administrating it himself at home.  












 The cost jumped from $1900 to over $4,000 per month.  Does anyone else have this problem.  To me, it seems less expensive for him to do his own infusions at home than to go to a hospital twice a day for the rest of his life. 

1 day ago

  • NewestOldest
  • Ksmiles123Crafty,
    Hello! Welcome to the site. I am so sorry to read of your brotherโ€™s current challenges. Unfortunately, there are many bad regulations re: infusions at home vs. the hospital setting that need to be changed.
    Home care companies have been trying to change these regulations for quite some time.
    Have you spoken with the supervisor to see if there are any possible reductions and or patient assistance programs available? 1 day ago
  • ChristinaHIt is very disappointing to hear that your brother can't receive his infusions at home. I would agree with you that the cost of doing it at the hospital would be more to Medicare. The other concern I have is the increased exposure to others who are coming and going from a hospital (twice daily) when he is immunocompromised, not to mention the time spent away from home. Is it possible to reach out to his physician and see if his office could make some calls? I don't know if your brother has purchased a supplemental policy that might assist in covering the extra expenses? I agree with Katie. Poor regulations and increased cost can be detrimental to patients that are just trying to get the treatment that they need. 1 day ago
Franny

Franny

Welcome, Genie

2 days ago

Ksmiles123

Ksmiles123Hello! Important update : Taking Tylenol can dampen the immune response, see below article:https://newsnetwork.mayoclinic.org/discussion/common-questions-about-covid-19-vaccinations-answered/

3 days ago

Reece

Reeceanswered the question Share Your Story - Symptoms and Diagnosis

I can honestly say that being the baby of four children, I hold the record of much illness compared to my siblings. Now that I am sixty, I still recall getting red throat and tonsillitis at five and six years of age. At seven, my tonsils were removed. …
RobinLjulievstillstandingand 8 others also answered the question RobinLand 10 others also answered the question

3 days ago

Kandy

Kandyhttps://bronchiectasisnewstoday.com/2021/02/19/bronchiectasis-may-increase-risk-severe-covid-19-disease/?fbclid=IwAR1SqZ67vnNbcd5-0VIydYAI2fBpbKJg0KMnFCVLHcpFb7mlO4LcFeg5iuw


This came in my email today from Bronchiecatasis News Today 

3 days ago

Kandy

KandyHere is a pic taken Sunday on my scooter.  Its very comfy too.  The kids were excited I think it was cool out very windy.  I don't think the wind ever stops here.  Basket in front you see my o2.  

3 days ago

Genie

Genie

Hi, just got connected to this site, looking forward to hearing how others are doing, with all that is happening and trying to stay well. Thanks!


I've had my first vaccine shot, due to the second on this coming Saturday, glad to be receiving it and will follow the advice here to get a good night's sleep and probably take some Tylenol before I go. 

3 days ago

Mylung

Mylung

Hello so happy to a found this site I was diagnosed with NTM approximately five years ago prior to that for years I was first diagnosed with COPD I was treated with a puffer Advair but was misdiagnosed at that time while taking the Advil puffer it was actually feeding the NTM  that was growing In my lungs All the while I kept getting sicker and sicker more chest infections more antibiotics losing weight extreme fatigue finally started to cough up blood then was treated for pneumonia as the NTM continued to attack my lungs finally my ct scan Showed what they thought was lung cancer only to do a pin biopsy that is when it was discovered I had NTM (non-tuberculosis microbacterium and my strain was avian .... after 18 months of treatment on the heavy antibiotics I have been continuing with sputum sampleโ€˜s that are showing negative to the avium but have also shown xneopi, was then again after mine months of finishing treatment and more courses of antibiotics they claimed that I was negative to the NTM landed in the hospital of me 2019 After that continued with a few more infections until just recently landed in the hospital again this time theyโ€™re telling me but I also now have bronchiectasis and also since the stout in May 2019 I have also discovered that I am IgG2 and IgG4  deficiency this recent hospital visit and say I was brought in because I have went to urgent care they had taken an x-ray and said that I had a right lung collapse just a small 7 mm but went in due to shortness of breath and also what felt like was postnasal drip going on for about a month at this point I am just exhausted I am so tired I donโ€™t know what to do I am really hoping but this time I truly get health theyโ€™ve started me on a new path her for the bronchiectasis that is the steroid which terrifies me because I donโ€™t want the NTM infection back I donโ€™t know how to balance things out anymore apparently my lung function is now at 19% any advice any help I am from Ontario

6 days ago

  • NewestOldestClick to View All Comments10 comment(s)
  • GretchenWelcome, MyLung! I am happy you found us and hope we can offer some support, and a comfortable environment to ask questions and discuss anything to help your journey with NTM as smoothly as it can be. 4 days ago
  • ChristinaHHi Mylung โ€‹! We are so glad that you are here. It sounds like you have definitely had a difficult journey with your lung diagnoses. I am praying that you are successful with your new treatment and the weight gain. It sounds like you are doing all the right things (taking probiotics, taking your prescribed medications, eating right). I am hopeful that on Tuesday that you get more clarity from your doctor and some good news as well. Keep us updated. We are here for you!4 days ago
  • Mylung Thank you ๐Ÿ‡จ๐Ÿ‡ฆ3 days ago
Mylung

Mylung

Good evening hope all is well....

6 days ago

Ksmiles123

Ksmiles123Hello! Have you been vaccinated with the Covid 19 vaccination? Did you experience symptoms following the vaccination?Below is information on what to expect following the vaccination. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html

1 week ago

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  • ChristinaHThank you Katie! I got my first shot (Moderna) a couple of weeks ago. My arm was super sore the next day, but gradually went away with two Advil. The only other weird side effect that I noticed was that a few days later I felt like I had a lump under my arm (armpit area)... as if I had swelling in a lymph node. Totally weird. That has subsided after about a week. I hadn't heard of that so I thought I would share. 4 days ago
  • Ksmiles123Yes, Kandy had reported the breast issue earlier.  I have read in several journals that swelling of the lymph glands has been reported in women but has eventually subsided in most. I am glad that you were able to get vaccination #1.  I am so looking forward to getting the vaccination in the near future.  I am giving my body a โ€œ tune upโ€ in the interim by getting the best nutrients , vitamins into my system.4 days ago
  • KandyThey had a announcement on tv even showed mammograms and info about covid shot affecting the breast. 3 days ago
Kandy

Kandy

Hello everyone well Lincare came with the home vent today its Astral name of it. Very patient friendly.  I hope this is does some good for me.  Just been to short breath last few months.  Hope my pulmo will let me try the kinda new neb med yupelri same as spiriva but for neb. Willing to try anything anymore.  I do now Ipratropium bromide in neb. 

1 week ago

  • NewestOldestClick to View All Comments9 comment(s)
  • ChristinaHKandyโ€‹ so happy that you received the new vent. Ipatropium bromide is what they call a "back door" bronchodilator. It can be really be effective in helping to keep those airways open. Just a heads up - it can be a little "drying" sometimes to the airway, so keep an eye out. (It may or may not do that to you.)  If your sputum starts to get thicker when using it, you can try to increase your water intake. If that doesn't work, let your physician know that you are noticing thicker sputum. 
    Yay for the scooter! You will be surprised how many ways you can utilize it! :)4 days ago
  • Ksmiles123Kandy,
    So happy for you that you got a scooter. Yes, you will be able to get around more, yahooo!4 days ago
  • KandyThanks Christina about the ipratropium bromide I wonder if that isn't what is happening now. I feel very congested but am not coughing anything up I have bronchiectasis and usually do. Almost done with a methylprednisolone burst don't see, to be doing much.  Doing vest 2 times a day before saline neb too.3 days ago
Kel

Kel

After twenty years of supposed bronchitis, sinus infections, and doctors just giving me various antibiotics, I was diagnosed with Bronchiectasis. I fainted while teaching, went to the hospital where x-Ray revealed the nodes in both lungs. At first they thought it was Valley Fever, but follow up with pulmonologist declared Bronchiectasis with MAC. This was ten years ago. I retired early from teaching because of the fatigue, continuous infections, pic lines, bronchoscopy procedures. I beat the MAC for 8 years, but now have it back since June. Iโ€™m on 3 antibiotics plus was on Arikayce for 3 months ( which was horrific). I am waiting for results from latest bronchoscopy ( takes several weeks to โ€œgrowโ€ in lab.). I have good days. However, this bout is very difficult with fatigue, achey lungs, coughing, unable to talk w/o coughing fits. 

1 week ago

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  • ChristinaHHi Kelโ€‹. Thank you for sharing your story. I am sorry to hear that the MAC is reoccurring and you are having to go through extensive treatment yet again. I imagine it has taken it's toll. Praying that you get good results from your most recent bronchoscopy. We had another community member comment about their use of Arikayce. What side effects did you notice? 1 day ago
  • KelHi. With Arikayce I had throat pain, hoarseness off & on, extreme fatigue, lungs were very irritated and sore. I coughed & coughed at each administration of this inhaled antibiotic. I was so happy when Dr ended it after 3 mo. It made my symptoms worse. Eight months into this round of MAC & still not well with shortness of breath, congestion, fatigue, depression. Very difficult compared to previous MAC infection. ๐Ÿ™๐Ÿป๐Ÿคž16 hours ago
  • Ksmiles123Kel, 
    I am so sorry to read your update.  Do you have great confidence in your physician? Are you being closely watched by a gastroenterologist?9 hours ago
Ksmiles123

Ksmiles123Hello! The article below offers a few suggestions re: preparing for your body for the Covid vaccination, a good nights sleep prior to the vaccination seems to be most important.https://www.webmd.com/vaccines/covid-19-vaccine/news/20210127/covid-19-vaccine-how-best-to-prepare

1 week ago

Ksmiles123

Ksmiles123

1 week ago

  • NewestOldest
  • KandyI read today maybe we will need 3 vaccines to be covered .  I didn't go in today as wasn't feeling well and been short of breath for while they said I shouldn't get the vaccine till I feel better when ever that is..  Friday a RT comes from Sioux Falls with the Astral home vent.  Sure hope it works. 1 week ago
  • Ksmiles123Kandy, 
    Yes, we need to be continuously updated with the right information on vaccination requirements. I am so sorry that you were not feeling well enough to get the vaccination. They advise a good nights sleep and to be feeling somewhat well, which is really hard to pinpoint a timeframe when a patient has a chronic disorder.  Feeling better will lessen the immune response reactions for the two days after the vaccination.  I am taking my probiotics, prebiotics, minerals to boost my immune system in preparation.
    I hope that the RT explains everything that you need to know re: the vent.  Try to write down a list of questions for her/ him today.
    You are in my prayers.  One day at a time.1 week ago
  • KandyThank you.  I seen this tonight so he been here and gone.  Will be back 3 months to check on me Its very easy machine. 1 week ago
Ksmiles123

Ksmiles123

Hello! Are you eating well throughout the pandemic? The article below reviews some basic tips on nutrition for anyone with a respiratory disorder: https://www.healthline.com/health/copd/diet-nutrition#takeaway

1 week ago

Ksmiles123

Ksmiles123commented onHope is here with COVID-19 vaccinations โ€” a few myths and facts on the vaccinations

 Thank you Christina. We really need to keep our members updated with correct information throughout these challenging times....

1 week ago

ChristinaH

ChristinaHcommented onHope is here with COVID-19 vaccinations โ€” a few myths and facts on the vaccinations

 Great information Katie! Hopefully this blog will help to clarify any misinformation that is floating out there. We appreciate all you do to keep us informed! :)...

1 week ago

Franny

Franny

I'm glad you joined us, Kazza.

1 week ago

Kandy

KandyHope everyone had a Happy Valentines Day! 

1 week 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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