Discussions

I nebulize 3% saline and use the Aerobika and huff cough twice a day. (I have also tried the Acapella.) I ride a stationary bike and walk on a treadmill for aerobic exercise. Even with all of this I’m not very successful with mucus clearing. My pulmonologist prescribed an AffloVest. If you use one, how do you like it? Thanks, Dana

The main idea behind controlling your breathing with Buteyko is that many people over-breath. I have found some success with this for Bronchiectasis. It take lots of practice, but it seems harmless and it's free.

We are seeking quotes to inspire and gather encouragement when life gets us down. Living with a chronic illness can bring dark days and loss of hope. Is there a saying or a famous quote, a pearl of wisdom that brings some positive light to your life when you feel that you are at the end of your rope?

Hello, I am looking for different treatment options for my mother who has Bronchietasis. I was wondering if anyone has tried cannabis (cbd oil, edibles, etc.) for their Bronchietasis? Obviously I feel like smoking cannabis would be counter productive but I was wondering if anyone had positive experiences with cbd oil for pain management, etc.? Thank you in advance

I have Bronchiectasis and I am supposed to go to Denver for Christmas. I have not traveled on a plane since I came down with this. I'm wondering if going to Denver for a week is such a good idea. I cough a lot and after my inhalers I cough up Phlem.

Thoughts?

Thanks sut

Hello everyone I am Kandy from South Dakota. Been sick most my life asthmatic overlapping copd, chronic bronchitis every year. Found I had bronchiectasis in 2014. Many end of life predictions starting at 10 yrs old. 1997 very sick told to get my affairs in order came home on oxygen. Been in hospital 2006 for strep pneumonia, 2015 exacerbation and this last Sept exacerbation they done a bronchcoscopy first for me. I just fight on as best I can.

I been advocating since 2009 beings many family members been asthmatic putting info in our papers and around the area. In 2013 some one told me to get hold of the Copd Foundation so I did. I received my title of Captain of South Dakota for advocacy in 2013. In October I write to our Governor and get the Proclamation making South Dakota Copd Awareness Month. Every year I have a copd event in my town. Write articles for papers in the area. As of now we have 3 captains for SD. I will have an event on Nov 3rd with our hospital bazaar. Also have a demo on our local radio station for November.. I put articles in the stores and at our local clinic. This year my daughters are helping me beings my health hasn't been good.I am admin in several support groups on FB and belong to several. Also 360social member.Wish me luck at the event!! I have been going to pulmonary rehab since 2012. Its 3 times a week not easy but I am there doing what helps me.

Do you have any item, like a de-humidifier, etc. that has a positive impact on your quality of life while dealing with a respiratory disease? Any recommendations?

Is there anyone here that got NTM after having chemo/radiation for lung cancer?

I am trying to make sense of what NTM is, why the treatment makes me so tired and what I can do to get past the tiredness.

Any advice?

Good or bad. Give experience traveling with medical equipment. Nebulizer, VEST system, clearance system.....

I read that calcium channel blockers can cause silent GERD symptoms such as coughing and that this is correlated with respiratory diseases such as bronchiectasis (BE). My dad has been on calcium channel blockers and has had a severe cough and now diagnosed with BE.

Anyone experiencing nail bed problems and losing fingernails.

My experience is I started getting artificial nails in October or December of 2017. I've always had beautiful nails, but I got gel nails and the last lady that removed them, damaged my nails. I started hitting my fingers or nails, not on purpose, just weird to explain. I had been complaining many many months before about my toenails looking green. Doctors kept saying just a toe fungus. Of course I say it's related to having pseudomonas.

In April 2018, again I hit my finger and fingernail very hard, I thought I broke it, but it was a sprain. Nail broken underneath, nail bed. Continued to keep it bandaged for months. Then it and another 'hit' nail completely came off.

I finally saw a dermatologist a few weeks ago. First, she said I have clubbing, which me and my pulmonary doctor disagree on. I presently have one full nail about to completely fall off and two nails that are black....fungus.

In 2017, bouts of pneumonia caused by pseudomonas. The meds I was given twice levofloxin. It C A N nail bed and fingernail issues and so can bronchietasis.

Just wondering are you having the same experience. What was done? The dermatologist original sent two prescriptions to a online pharmacy she uses. 1 was $240 and the other over $2000....yes, no mistake $2000. My insurance refused that. I hope to hear people experiencing the same.

My immunologist discovered through blood tests that I have very low levels of CD8 killer T-cells. He says in about a decade they may be able to correct this genetic defect. This may be a piece of the puzzle why I have bronchiectasis and a history of pulmonary NTM. This also explains why I am so susceptible to yeast/fungal infections especially when on antibiotics.

I'm newly diagnosed with Bronchiectasis and as part of the follow up I was tested for TB/NTM, this has shown negative for TB but I've been found to have 3 different NTM infections which were all discovered from a single sputum afb smear/culture, is this the norm for bronchiectasis patients? Also curious if anyone else has had multiple strains at the same time and what the procedure is regarding treatment, any advice on questions I should ask at next follow up appt would also be of great help as I really have no idea regarding all of this.

Medicare switched me to Lincare as my service provider for nebulizer equipment. When a new compressor and cups were delivered I was given directions for use. The provider told me that Lincare believes that washing the nebulizer cups with soap is to be avoided because bubles can form and interrupt the flow. The care provider showed me how to simply rinse all equipment ( except hose of course) under a faucet with my hands in warm water. I had always been washing the pieces with soap and water and then rinsing them after each use and actually boiling the pieces for 10 minutes once a week. . What do others do?

After being off treatment for MAC with bronchiectasis for 3 months my sputum cultures are positive once again. My doc is referring me to National Jewish in Denver for assessment and treatment plan. If you've been can you share your experience so I'll know what to expect. Thank you

Has anyone had a negative culture for MAC in between 2 positive cultures. Makes me wonder if there are false negatives.

I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the same thing called NAC found at a health food store.

I am new to lung disease although I’ve had a chronic cough and trouble breathing for two decades. Never saw anybody for it because I was once told it was all from anxiety . January 2015 I decided I should get it checked out and after much testing & many doctors found I have bronchiectasis, fibrosis and mycobacterium abscessus.

I go in hospital on Monday to start the drugs. Amikacin, Clofazimine and Imipenim. ( I’m allergic to penicillin so they want to start the latter in the hospital.).

Has anyone had this particular cocktail and how bad are the side effects? I am already a pretty sick 52-year-old and I’m very sensitive to medications. Just want to know what to expect. Does anyone take probiotics with their antibiotic therapy?

Thanks all. Be well.

'this is so weird I talked to my lincare supplier Rt today about trouble with my vent we talked about several things one of the afflovest maybe I can get approved for and he brought up this suction machine I cant remember the name of it. He as calling my pulmonologist in ND about these. He said just think of it as a vacuum. I do have the hil rom vest since 2014.

My doctor is recommending that I try colistin inhaled. My insurance will not cover and my 6 months of treatment will cost around $25,000. The doctor's request for an exemption was denied so the cost will be totally out of pocket. Has anyone else had a problem with this?

It is appearing more and more likely that MAI treatment is necessary and can no longer be avoided. How is it administered? Are these pills taken at home or an intravenous application? How often if intravenous? Or is it different for each individual?

I cough and spit out mucus a lot. Sometimes this will happen when I'm out, say in a store or restaurant. I try to cough/spit into a tissue as discreetly as possible, but it is pretty gross. Any suggestions?

Does anyone happen to have a list of pulmonologist's that specialize in Non-cf cystic Bronchiectasis in infants and pediatrics in the United States?? I am battling our insurance company over a denial for her to travel from Texas to Colorado for 10 day intense program. They want me to call 125 pulmonologist in Texas before they will approve it. Believe it or not, I have previously done that but I cannot find my list anywhere. I have to have my appeal sent in and received by June 18th, when they are going to do a peer to peer review with our pulmonologist and their medical director. If anyone one has a list or know where I could get one I would deeply appreciative! TIA

Rplaset,

Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken lessen the angst when dealing with a new diagnosis.

I am so glad that your wife was diagnosed early. In the interim, Please ask any questions which we may be able to assist you with.

Wishing you the very, very best!

Kati

Does anyone have experience with Saline Solution Therapy? If so, how often do you do it? Is it on a daily basis? Have you had any positive or adverse effects?