Discussions

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?

1-2 months after beating the NTM and ending the Clarithromycin (and other antibiotics) I have increased shortness of breath. My pulmo thinks the Clarithromycin was reducing my COPD inflammation, and now the inflammation is back.

However, she is hesitant to put me on just the Clarithromycin because if the NTM returns, it could develop resistance before we even know it's back.

Anyone else in this dilemma? What did your doc recommend?

While it's not targeted specifically towards people with chronic illness, the AARP website has an excellent page full of caregiver resources. It includes helpful information on caregiver basics, physical and emotional health, financial and legal issues as finding balance for the caregiver. https://www.aarp.org/caregiving/?intcmp=GLBNAV-PL-...

I just discovered you can buy respiratory equipment on ebay. Is that an option for you, Made Pramana?

Does anyone know how to upload a pdf here? I found recent articles on bronchiectasis.

How many on this forum are HCP with bronchiectasis?

I am an RN.

We have recently gotten a referral approved for out of state out of network specialist. Was curious if anyone had any experience with Dr. Charles Daley at Nation Jewish Health Facility in Colorado?

Does anyone have a promotional/discount code for the World Conference registration fee? It is going to cost my husband and I $500 to both register. We habe been saving for almost a year for this, since we are turning this conference into a road trip vacation with all 3 of our kiddos and my parents. So what we have saved is has been put towards gas, sleeping accommodations, food, and educational fun. We are driving a RV and SUV from TX to DC.......if you knew my family you would understand why we are calling this the Griswald family vacation!!!!! LOL! I guess we just were not expecting that large of a registration fee, because we want to be able to be present all 3 days not just patient forum on the last day. Any discount or ideas on how we can get the registration fees reduced would be greatly appreciated!

Once again picture added for smiles! Just Sailor Grace being her silly self!