Brandon

Brandon voted on The Challenges of Summer for Respiratory Patients

Gave a thumbs up for a blog post!

50 minutes ago

Kandy

Kandyvoted on The Challenges of Summer for Respiratory Patients

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1 day ago

LJ Walsh

LJ Walshvoted on The Challenges of Summer for Respiratory Patients

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2 days ago

Hawaiigirl

Hawaiigirl

Does anyone use the AEROBIKA and get good results? Medicare doesn't cover the solution๐Ÿ˜•

3 days ago

  • NewestOldest
  • KandyYes aerobika very good what solution you talking about hypertonic saline?  I have to pay for mine and am medicare and medcaid.  
    3 days ago
  • Ksmiles123Yes, many patients like to use this device.
    I also assume that you are referring to hypertonic saline?2 days ago
  • YanI have been using it for years. It works best when you connect it with your nebulizer medicine cup. When nebulizer is runing, you suck in hypertonic sailing, (mine is 3%), then blow out from Aerobika, it looses up the mucus, you cough up easily. It is a wonderful thing.  Of course you can use it whenever you need separately. My problems now is to find a supplier who carry right nebulizer machine so I can attach the Aerobika to the medicine cup. I believe Pari is only company makes Vios Nebulizer with right medicine cup to connect Aerobika, my old supplier is not carry it anymore. Called bunches of suppliers, none of then carry Pari nebulizer machines, what a shame. Still working on it. I lives in Central FL.wish me good luck. Anyone has any ideas. Love to know.2 days ago
Hawaiigirl

Hawaiigirl

Do I need to have an allergy test done because I have post nasal drip? It seems like there are others that have the same problem.

3 days ago

Gretchen

Gretchenvoted on NTM/Bronchiectasis Patients and Carbohydrates

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3 days ago

Ksmiles123

Ksmiles123answered the question Having side effects with both rifampin and rifabutin. Anyone using an alternative to these?

Hello! The link below offers information on a study that was researching the possibility of 2 drugs vs.3 drugs. I donโ€™t know whether or not it is still open to participants; however, it may be worth researching. https://www …

3 days ago

Gretchen

GretchenMost of us are in the midst of a heatwave which always impacts those with a lung condition. Have you read the blog post that offers tips for the summer months? https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/53/The-Challenges-of-Summer-for-Respiratory-Patients

The Challenges of Summer for Respiratory Patients

This blog post was written by Katie Keating, RN, MS, patient advocate Summer has finally arrived!!! It is a happy season for most people who enjoy spending more time outdoors. I loved summer to the nth degree when I was younger and before I experienced respiratory issues. Now, summers can be …

3 days ago

izzie

izzieasked the question: Having side effects with both rifampin and rifabutin. Anyone using an alternative to these?

Hello, my first time on this blog! In 2017 I began the 3-drug regimen of azithromycin, ethambutol, and rifampin. After 12 months with no side effects, my platelet count suddenly began dropping, which was attributed to the rifampin and I was taken off it …

3 days ago

Margo

Margo

I am always looking for ways to gain weight. My doctors stress the need for fat as well as protein. Sometimes I use Lean Cuisine lunches and add a tablespoon of fat and some left over meat to increase the protein. 

4 days ago

Ksmiles123

Ksmiles123

Hello! Many patients grab a Diet Coke for a boost of energy. Please read the article below.https://realfarmacy.com/diet-soda-aspartame-60000-women/

5 days ago

Kandy

Kandy

5 days ago

julia

julia

can any recommend the best probiotic while undergoing MAC therapy?  And when is the best time to take them?


Also, has anyone had luck with Acapella device?  I have just started using it.

6 days ago

Made Pramana

Made Pramana

I just watched the video about nutrition that Brandon share and it motivated me to eat more. I am underweight and need to consume food as much as I can. ๐Ÿ˜Š

6 days ago

Kandy

Kandy

ttps://proaxsis.com/product/neatstik-box-of-10/  At home sputum sample testing?  Anyone hear of this?  Expensive.

1 week ago

RobinL

RobinL

Hello, I'm new to this site.  I have some questions.  I'll be starting treatment for MAC in the next few days.  Question 1, has anyone started therapy 1 drug at a time?  My Dr. is starting me with Az, then Etham, then Rifampin.  I've watched at National Jewish videos and don't see this suggested anywhere?  Question 2, since I haven't been able to find anyone else who has gone through treatment, I'm just wondering if there is a concensus on the side effects, such as onset after taking, type of SE and duration.  Question 3, any suggestions regarding what to eat or not to eat to help with the SE?  Much Thanks!!!

1 week ago

Jessica

Jessica

P.S. from Jessica- 
A tea of lavender buds (flowers)  was recommended- three teaspoons steeped for about 10 minutes in an infuser in boiling water to relieve congestion.
Absolutely HORRIBLE taste! Unless you like to drink perfume, avoid! 

1 week ago

Jessica

Jessica

8-13-19 AN UPDATE- Jessica here.
After six and a half months of treatment, I have decided to go off the Arikayce treatment, coupled with the three antibiotics due to increased difficulty in talking.
I saw my pulmonary doc today and told him that I'm about "at the end of my rope" due to having to whisper. He basically said to go ahead and stop as there is no guarantee that the M.A.I. lung infection will not return even if I had completed the twelve month regimen. There were three clear sputum samples back in May so it is an unknown if it will return as it did for the second time. I had already completed two years of treatment without the Arikayce and then about a year later, the M.A.I. came roaring back. As of tonight I will discontinue the Arikayce, Azithromycin, Ethambutol, Rifampin and Omeprozole. The next question is how to dry up all the mucus that keeps me coughing. Maybe a salt pipe might help as a neighbor mentioned that. Must get the congestion down as that is a breeding ground for infection and I'm hoping little by little, I'll be able to talk normally. 
If you are reading this and are Arikayce, you may only get hoarse and not lose your voice as everyone is different. 
The major side effects have been- dry mouth, hoarseness, loss of voice, sore tongue, ulcerated vocal chords, burning around the vocal chords  and stomach problems due to the Azithromycin.
I'll continue to write while trying to recover from the treatment just for general info..
 For those of you who are struggling, I wish you strength.

1 week ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Ksmiles123Yes, call in advance to make sure that they have received your medical reports, such as cat scans the week before you leave . 5 days ago
  • JessicaYes, thanks for the heads up about calling first before going to make sure all is in order. Very frustrating to arrive and have things not go as planned!
     I have registered over the phone and will have a phone interview this coming Tues. (Aug. 20th) with Nat'l Jewish Hospital.  Fortunately, one doc is within my health ins. network. 
    I am getting a CT scan this Monday here where I live, locally and will get a copy of the disc. I have the past two in my file as well.
    I am wondering if I should wait and see if the M.A.I. comes back before going to see them. Seems like I am" jumping the gun"  going to see them right now- not sure.  Any input on this?
     Best Wishes and thanks to all. 
    Jessica5 days ago
  • Ksmiles123Hello! I do not think that you are jumping the โ€œ gunโ€.   Good luck w the phone call this week and getting prepared.   Wishing you the best!  Katie3 days ago
Margo

Margo

A couple of weeks ago someone posted a video of an excellent talk by a nutritionist from National Jewish Health. It was part of a conference. How can I watch the entire conference?

1 week ago

Ksmiles123

Ksmiles123answered the question Tried everything and still lots of coughing?

Redhead, Hello! His link is below, his specialty is hoarseness. Jessica, Interesting coincidence that we come across a doc who specializes in hoarseness.... Redhead, Have you been diagnosed with NTM, Bronchiectasis? There are many causes fir a …

1 week ago

redhead

redheadasked the question: Tried everything and still lots of coughing?

I found a you tube video by Dr. Robert Bastian. He talks about a type of cough that is exactly what I have. His presentation is called Coughing That Won't Go Away. Has anyone seen this Doctor (near Chicago) or tried the medications he suggests?

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a link for an upcoming patient conference at National Jewish in Denver, CO. https://www.nationaljewish.org/2019ntmpatients

2019 NTM Lecture Series for Patients and Families

This conference has been designed for those currently diagnosed with Noturberculous Mycobacterial (NTM) infections andย Bronchiectasis (including their families) and those interested in hearing more about NTM topics relating to medical and quality of life issues.

1 week ago

Jessica

Jessica

Jessica here.
My vocal chords have developed ulcers so I am going to the ENT doc more often so that he can put a scope down my throat to take a look.
Have to see him again at the end of the month. I may have to stop the treatment for M.A.I.. Still cannot talk without straining and am very hoarse.  I made sure to get this info. to the Arikayce people as regards side effects. I have finished six months of treatment. (with six to go) We shall see.
Hope others are not experiencing this with the drug Arikayce. Best Wishes to all.

1 week ago

Ksmiles123

Ksmiles123

Hello! Misuse of antibiotics is common these days; it is so important for this patient population not to misuse antibiotics. Please review the link below.https://www.nationaljewish.org/education-training/patient-education/print-multimedia/materials-printer?nodeId=ce2c3d34-0398-4bfa-b765-91b21ef64e46

1 week ago

Randy

Randy

I feel terrible, need help and answers to questions.

2 weeks ago

Kristen

KristenI know we talk a fair amount about nutrition in this community, so I wanted to share this article with the group:
https://www.mdmag.com/medical-news/processed-meat-greater-copd-risk

Processed Meat Associated with Greater COPD Risk

A new study found significantly greater COPD development risk among middle-aged women who eat processed meatโ€”and doubly worse risk for those who also smoke and have unhealthy diets.

2 weeks ago

  • NewestOldest
  • GretchenThanks you Kristen! I think Ksmiles has made it clear that along her journey with a lung condition and multiple rounds of antibiotics, nutrition plays a huge role in our health and daily comfort. Thank you for adding to the arsenal of knowledge. 
    2 weeks ago
  • Ksmiles123Kristen,
    Yes, processed meat is not good for our guts, our bodies; can result in inflammation, etc.   There are many healthy, less expensive proteins which meet our daily protein requirements and can substitute for processed foods.1 week ago
Ksmiles123

Ksmiles123Hello! Do you have difficulty getting sputum specimens ?  The NJC information sheet below discusses sputum induction.
https://www.nationaljewish.org/education-training/patient-education/print-multimedia/materials-printer?nodeId=00b22573-b696-49a1-86e0-30f286e9dcea

2 weeks ago

Ksmiles123

Ksmiles123Hello! Do you understand what Fev1 and FVC values mean when taking a pulmonary function test?https://www.nationaljewish.org/education-training/patient-education/print-multimedia/materials-printer?nodeId=ac4ba08d-f77d-49c8-ac62-9a6c7ef32821

2 weeks ago

Delia

Deliavoted on Living with Bronchiectasis

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2 weeks ago

Ksmiles123

Ksmiles123

Hello! Have you been to a pulmonary rehab program? Below is information from NJC on pulmonary rehabilitation.https://www.nationaljewish.org/education-training/patient-education/print-multimedia/materials-printer?nodeId=3811acfb-c60c-4e5b-832d-900e26a5f151

2 weeks ago

Kandy

Kandyvoted on Managing Stress with Bronchiectasis and NTM

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2 weeks ago

Ksmiles123

Ksmiles123

Hello! How are you doing?
I am so glad that we have had a few non humid days recently.   August is usually a very humid month.  Mycobacterium thrive in humid conditions.  I got sick w a bug every August for many consecutive years until I figured out what I was doing wrong. Please avoid excessive outdoor activity during the humid days.  Keep well hydrated, exercise indoors and take preventive measures , previously written on this site to avoid getting sick.
Have a pleasant weekend! Katie

2 weeks ago

Ksmiles123

Ksmiles123answered the question CEO Women with NTM

NTM impacts each patient in different ways; most experience a level of fatigue. Side effects from medications further impact oneโ€™s ability to function well. Some come push through these challenges and continue to work , many cannot and are forced into …

2 weeks ago

Murph

Murph

Hello this is Murph, today OK, I was able to walk for 1 hr today, but I am also on steroids AGAIN. The Infectious Disease MD had a repeat Chest CT Scan done last week. HE explained no real major changes in my CT scan, yet I am on steroids. I asked the ID MD that he had at least 3-4 positive sputum samples for NTM. He still states that the treatment is more "Toxic" and should leave things as is. I informed the MD of all the "Toxic" drugs out there. I asked the MD on the phone was this "Treatment by Omission" I just received a sputum sample from 2 weeks ago and it grew "Mold" still waiting on culture results. I been told I know too much, but once a MD assumes treatment he/she is also responsible for pt. outcome. I'm trying to keep my mind clear, my body as healthy as possible, and my spirit strong. One Day At a Time- Murph

3 weeks ago

C123456789

C123456789asked the question: CEO Women with NTM

Women with NTM and high level jobs . ( CEO, Managing director , etc ) . How do you get through your long stressful days coping with your disease?

3 weeks ago

Delia

Deliavoted on Managing Stress with Bronchiectasis and NTM

Gave a thumbs up for a blog post!

3 weeks ago

Gretchen

Gretchen

Welcome to all new members of the community! Thank you for being here and participating in the lives of others like you. As we learned at the NTM & Bronchiectasis Physician/Patient Conference, we all have a lot of unanswered questions. Is there something you need help in answering or do you have some experiences that could help someone else? Please share and inquire. If you are wondering about something related to Bronchiectasis and NTM, there is a good chance someone else is too. To Answer a question, click on the Question you wish to view and then click on Add an Answer. A box will appear for you to type in your answer or experience. We have over 150 questions-share your knowledge! If you wish to Ask a question, go to the left side of the screen under the Community Discussion menu. โ€ข Click on Question and Answers. โ€ข From here you will see Ask a Question. โ€ข Click on it and you will be taken to a separate screen.โ€ข Under Question, type in what you wish to ask and add in a brief description or any other comments under Description. โ€ข There is a section named Tags. This will assist users in searching for information that involves your question, like Bronchiectasis, NTM, Quality of Life, Research, etc. You can add as many tags as you want. Make sure you add a comma between each individual tag.โ€ข Finally, click on the orange box labeled ASK and it will be posted in the Activity Feed.

3 weeks ago

KK

KK

Hi are there other drugs to treat ntm   Other than ethambutol rifimapin   Sorry for spelling

3 weeks ago

Ksmiles123

Ksmiles123

Hello! Below are the rankings of hospitals, covering most specialty areas.https://health.usnews.com/best-hospitals

3 weeks ago

Ksmiles123

Ksmiles123

Hello! Do you understand how hospitals are evaluated? Each year, US News and World reports releases their findings Below is the list of best pulmonary hospitals.
.https://health.usnews.com/best-hospitals/rankings/pulmonology

3 weeks ago

Ksmiles123

Ksmiles123

Merry,
How are you doing? We havenโ€™t heard from you in awhile? Katie

3 weeks ago

Ksmiles123

Ksmiles123Hello! Do you understand the different types of cavities which can develop in a patientโ€™s lungs?https://www.livestrong.com/article/193939-what-are-the-causes-of-cavity-in-the-lungs/

What Are the Causes of Cavity in the Lungs? | Livestrong.com

Cavities in the lungs are formed by inflammation of lung tissue leading to the development of an abscess. When the abscess ruptures, the contents are expectorated, leaving behind an air- and fluid-filled cavity. Chest X-rays and computer tomography, or CT, scans can detect lung cavitations.

3 weeks ago

Ksmiles123

Ksmiles123

Rplaset,
Hello!  I am so glad to read that wife is doing well.  Wishing her continuing improvement.  Please keep us posted.

3 weeks ago

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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.