Kat P

Kat Pasked the question: NTM risk to others

My niece will soon be getting a bone marrow transplant. I realize that my NTM is not considered infectious to others, but are there any exceptions? I would like to help with her post-transplant care, but that is when she is most vulnerable to infection. …

2 hours ago

Ksmiles123

Ksmiles123

Hello! Are you up to listening to a NTM podcast? https://ntmtalk.com/

3 hours ago

sunflowergayle

sunflowergayle

Hi my name is gayle and I just came across this site.  I have had asthma for 18 yrs after inhaling a poisonous gas at work.  The beginning of the year I got very sick with respiratory infections and ending up in the ER twice - told to eat toast and that would help - it didn't.  Symptoms were congestion in the sinuses - shortness of breath and a chronic cough.  It wasn't till about 2 months ago that I was diagnosed with bronchiectasis.  God has blessed me with a Pulmonary Dr whose speciality is bronchiectasis.  We are working on triggers and what I can do to manage it.  Anyone else have these systems and how do you deal with them?

21 hours ago

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  • Ksmiles123Hello Gayle,
    Welcome to the site. I am glad that you found a bronchiectasis specialist and are in the hands of someone who can assist you.  There are many different triggers that affect many patients at different times of the year. It is advisable to stay away from leaves,fire pits, smoke chimneys, etc during the fall, winter months. Some patients do a nasal wash that assist with cleaning the nasal/sinus cavities.  There are articles on this subject, under the blog article section which is o the left of this site . We post different, relevant information on this site on a daily basis. I hope that you will become an active member, working towards her health goals. Katie21 hours ago
  • KandyHi Gayle welcome to our forum.  I to had long time asthma overlapped to copd then 2014 was told I have bronchiectasis.  My pulmo has to tend with my 4 lung diseases.  Lucky that you can see a bronchiectasis specialist . I have several neb treatments and saline to neb before the vest airway system.  I also take zpak 3 times a week to help control infections and also it helps inflammation.  My pulmo doesn't give out pred much.  15 hours ago
Ksmiles123

Ksmiles123

Hello! Link below is in the shingles vaccination:https://www.cdc.gov/vaccines/vpd/shingles/index.html

1 day ago

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  • KandyYes I knew about the shot with the old shot 2 drs said not to get it.  The new one is different not a live virus.  My pulmo kept bugging me to get it and I had talked to my allergist about it. The reason I was scared to get the shot was in 70 71 I ended up in University Hospital Mn with a rare zoster and almost died.  Will have to discuss with my allergist in February again. 15 hours ago
  • Ksmiles123I hope that you have some relief from the discomfort soon.5 hours ago
Ksmiles123

Ksmiles123

Hello we all need to read words of HOPE throughout challenging times. https://www.goalcast.com/2020/02/27/hope-quotes/ Let me know what your favorite optimistic quote is. Katie

1 day ago

Ksmiles123

Ksmiles123Hello! Are you watching the foods you are eating this holiday weekend? https://www.onhealth.com/content/1/digestive_health_myths

1 day ago

Elizabeth79

Elizabeth79

Hello, I am new to the group and feeling quite distressed and in need of some advice please. I am a 41 year old with bronchiectasis. It was diagnosed a few years ago when I randomly coughed up blood and had a scan. I had whooping cough in my 20s and coughed so hard that apparently I damaged my lung a little. 


I have morning phlegm and clear my throat a lot after waking up but the condition hasn’t really bothered me until a few months ago when I got an infection. I noticed that the mucus increased. The dr gave me antibiotics that didn’t work, so they gave me a second type which didn’t work either. A chest x ray revealed that I had inflammation in the damaged area. I then coughed up a little blood so was sent for a CT scan where they confirmed bronchiectasis again with inflammation. They gave me a pot so I could give a sample of the mucus but I struggled to get any up far enough to put in the pot. 
I started coughing up fresh blood a little at night time as soon as I lay down. I gave them a sample on Monday (from Friday night) and am currently awaiting the results. 


An hour ago my chest rattled when I inhaled and I cough up blood. I’m so worried as this hasn’t happened whilst I’ve been upright before and the quantity is more than before. 
I don’t know anyone with this condition and not sure if these symptoms are typical for this condition. Any insight or tips would be really appreciated. I see lots of members are in the USA so happy thanks giving to you. Thank you x

2 days ago

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  • Ksmiles123Hello! Ahh, thank you for your words-we are here to help you. I have been in your shoes, not knowing anyone in a similar situation.
    I would recommend taking it easy for the weekend. Your job requires energy, it is more important to take care of yourself if you can do so. There is information on airway clearance on this site, scroll through the questions and answer section. I would not push with heavy airway clearance today- call your doctor tomorrow to see if they have any results. You can do simple deep breathing exercises, 4in, 6 out only if you are up to it.
    They do not rush to do surgery.  They most likely would have mentioned this as a possibility if they saw specific issues on your cat scan. 1st line of treatment are medications. Katie2 days ago
  • Elizabeth79Thank you. I appreciate you taking the time to help 😊2 days ago
  • Ksmiles123You are most welcome! I realize how hard it is to put the brakes on at a young age- have hope, new treatments are available or in the pipeline which were not available a decade ago. Call the MD office first thing in the am before it gets super busy. Katie2 days ago
Ksmiles123

Ksmiles123

Hello! Have a pleasant Thanksgiving Holiday. I am grateful to be a member on this site with all of you. I am also grateful for new medications and many other new medications in the pipeline. If you are not feeling well-please post any questions that you have.  We are here to support you. Katie 

3 days ago

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  • Ksmiles123Hello! I am sorry to read your update.  Many of us have compromised immune systems and get shingles more frequently than the rest of the population. I hope that the meds bring relief. Are you able to take oatmeal baths?1 day ago
  • KandyI wouldn't wish this on my worst enemy.  This is so painful.  7 days of anti viral med.  Pills for pain and Tylenol.  14 hours ago
  • Ksmiles123Yes, it can be very painful. I had it on my back years ago. Many of us in support groups have dealt with shingles- another piece of the unsolved puzzle.5 hours ago
Gretchen

Gretchen

Welcome back everyone! Apologies for the site issues, but a great thank you to our dedicated staff, Vinny and Pete, who worked above and beyond to get us back online! Have a safe and warm Thanksgiving, however it looks this year! Find some importance in this world that you can feel grateful for and that helps to bring you into the season. I offer my gratitude to this community, our health care workers and all those that make it possible to live as healthy and happy as we can. 

3 days ago

Ksmiles123

Ksmiles123

4 days ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Ksmiles123K, feel better.  I hope that the medication works quickly. Katie20 hours ago
  • KandyThanks you me too!! 14 hours ago
  • Ksmiles123Hopefully, some relief will come by day 4.  Try to relax as much as possible- your body needs to heal. Katie5 hours ago
Ksmiles123

Ksmiles123

Hello! What are you doing for Thanksgiving? We are here to support you, to answer questions throughout the weekend.  I am not traveling to family in NJ which is my Thanksgiving Tradition. I am staying home, simple Turkey dinner for three. 
Being alone, or with a few people may be very difficult; however, your life is of great value. It is important to maintain all Covid infection control precautions and believe that we can get to the other side of this issue. Vaccinations are around the corner.

4 days ago

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  • GretchenWe are staying in Virginia, with no family coming in from Ohio. I think COVID has taught us to live a little more simply and without all the extras. It makes me sad to not see my siblings and father, as well as my in-laws, but I know we will all be better off staying in our own bubbles! Be well all!3 days ago
  • Ksmiles123I agree that Covid has taught us to live simpler and other life lessons.
    Let us just take one day at a time, being grateful for what we do have until we get to the other side of this challenge.3 days ago
Ksmiles123

Ksmiles123

Hello! How are you doing today? I really missed this site when it was down for updates. I have become so accustomed to checking in several times a day.

5 days ago

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  • DeliaHi, I'm doing ok - cannot complain. Looking forward to the holiday... Even though it will look a little different this year, I will continue my tradition of taking a step back and reflecting on the year that is almost behind us, and recognize all the things for which I am grateful. 

    I came across an Instagram post that Hoda Kotb's shared, which really resonated with me - posting it below. 

    Wishing you all a wonderful (and safe) Thanksgiving!4 days ago
  • Ksmiles123Delia,
    Hello! Thank you for sharing Hodas post.  Yes,  this year has been a huge eye 👁 opener -to be grateful for what we do have. We must see the positive outcomes of our present challenges,  despite the difficulties that we continue to face. Stay safe.4 days ago
Ksmiles123

Ksmiles123Hello! How are you doing today? Is there a specific question that you would like answered? 
Below is an article on social distancing: https://www.jwatch.org/na52712/2020/11/03/social-distancings-effects-covid-19-roles-timing-and?query=C19&cid=DM103097_NEJM_Registered_Users_and_InActive&bid=304499312

2 weeks ago

Ksmiles123

Ksmiles123Hello! Today is World Kindness Day! The link below lists 7 ways to add more kindness into your day: https://www.randomactsofkindness.org/world-kindness-day/seven-ways
Patients always remember a person who uplifted them when they were not feeling up to par. Do you remember a particular person who uplifted you?

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Another new treatment for Covid 19: https://www.lilly.com/news/media/media-kits/bamlanivimab-covid19

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Are you doing your airway clearance on a regular basis? Flu season is upon us- airway clearance is really needed now and in the months ahead. Please review the slides frim the NTM / Bronchiectasis Patient Education Series:https://ntminfo.org/wp-content/uploads/2020/11/Airway-Clearance-Talk-for-NTMir-October-2020.pdf

2 weeks ago

Ksmiles123

Ksmiles123commented onFall Precautions for NTM/Bronchiectasis Patients During the Covid-19 Pandemic

 Kathy,I am glad that the article was helpful. Good question- I never thought about your question. Most people get allergies in the spring, not the flu since the flu is usually seasonal, November until April. Katie ...

2 weeks ago

Norcal Kathy

Norcal Kathycommented onFall Precautions for NTM/Bronchiectasis Patients During the Covid-19 Pandemic

 Informative article with great links. I wonder since the flu shot only lasts 6 months wouldn't be beneficial to have two per year? I have often contracted the flu in April or May. ...

2 weeks ago

Gretchen

Gretchen

Happy Veterans Day-honoring all who have served both domestically and abroad. Thank you for the sacrifices to defend our freedoms. Thank you is never enough for the years of deployments and separation from families and friends-we offer our gratitude. 

2 weeks ago

Stephanie Williams, RRT

Stephanie Williams, RRTI think we can all agree that this year has been hard. It has been a year of challenges including being distant from friends and family. This year, the holidays will look different for many of us. I know my family will not be gathering together in one place, which is a very sad thing. I know many of you are in similar situations and won't be able to spend time with family and friends as you would wish.I wanted to invite you to a special community gathering that we are calling "Friendsgiving". Please join us on Wednesday, November 25th at 3:00pm EST for a time to get together and enjoy each other's company for a while and just be thankful for our online community of friends. I hope you will save the date and plan to join us. I am looking forward to spending that time with you!

2 weeks ago

Ksmiles123

Ksmiles123Hello! Below is an excellent presentation on medication management from the recent NTM/ Bronchiectasis Patient Conference: https://ntminfo.org/wp-content/uploads/2020/11/Medication-Managment-Oct-2020.pdf
Let us know if you have any questions. Katie 

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Below is a great presentation on Nutrition and the NTM Patient: https://ntminfo.org/wp-content/uploads/2020/11/Fight-Back-with-Food-October-2020.pdf

2 weeks ago

Ksmiles123

Ksmiles123

Hello! Do you know what your vitamin D level is? Are you getting adequate vitamin D in your diet? The link below is a fact sheet on vitamin Dhttps://ods.od.nih.gov/factsheets/VitaminD-Consumer/

2 weeks ago

Ksmiles123

Ksmiles123

2 weeks ago

Delia

Delia

Do you want to know how COVID-19 impacts the health of people with Non-CF Bronchiectasis? Help doctors find out by completing an ONLINE SURVEY.

The survey will take around 30 minutes and will help researchers understand how COVID-19 affects different health communities. We will study the impact of rare and common disease as well as sociodemographic factors. To participate, follow this survey link: https://redcap.link/covid_in_communities

This study is coordinated by NIH scientists: Dr. Beth Kozel (NHLBI), Dr. Robert Hufnagel (NEI), and Dr. Tiffany Powell-Wiley (NHLBI) in collaboration with numerous NIH physicians/researchers, including Dr. Kenneth Olivier (NHLBI), and Dr. Rebecca Prevots (NIAID), and community advocacy groups.

Questions regarding the survey can be directed to CovidInCommunities@nhlbi.nih.gov

2 weeks ago

Ksmiles123

Ksmiles123answered the question CEO Women with NTM

S2020, Hello! Are you working from home? Are you able to take a medical leave? Are you taking meds for NTM? The fatigue can be debilitating for some. As difficult as it is- it is better to face the situation at hand rather than make errors at work. …
S2020 also answered the question S2020 also answered the question

2 weeks ago

Mama mojo

Mama mojo

I have question. Is it possible to have small amount of MAC bacteria. The reason I ask is because I only have 2 symptoms of a MAC infection. A productive cough and weight loss. I am not short of breath, have no fever, and no loss of energy. I was diagnosed w bronchiectasis in May and Candida and Mac was evident after a sputum sample. I do not want to try the antibiotic regimen if I can avoid it. I am 70 years old and if I keep coughing maybe I can avoid pneumonia etc.. 

3 weeks ago

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  • Ksmiles123Hello! I assume that you have a lighter load of the mycobacterium. Your doctor will monitor your symptoms ; hopefully, you can get way without having to take the drugs. It is important to report any changes to him/ her .  Have you seen a Nutrionist Re: your weight loss? 2 weeks ago
  • KhwWhat does “lighter load” mean?2 weeks ago
  • Ksmiles123Not high in the mycobacterial count.   You can have varying degrees of infection in your lungs.2 weeks ago
Ksmiles123

Ksmiles123Hello! What type of mask are you wearing?https://www.mindbodygreen.com/articles/3-factors-when-buying-a-face-mask

3 weeks ago

Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question Do you practice airway clearance techniques?

Di ,This is great - thank you for taking time to answer. It helps me to know what works for different people because we work with so many individuals. You never know when your answer will be the one that might make it possible for me to help …
Ksmiles123Mama mojoKandyand 1 other also answered the question Ksmiles123and 3 others also answered the question

3 weeks 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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