Discussions

I found this on my state's COVID information hub. It's meant for unvaccinated, uninfected individuals living in the 50 states to assess their risk given their medical/health conditions. If you know anyone with bronchiectasis (it's one of the conditions listed) who hasn't been vaccinated, he/she might want to use it. I did it myself although I am fully vaccinated and it's an eye-opener.

Hi cicimac! I believe that Arikayce offers an AriKares program. They company asks you to fill out this form with your physician. They market that they will help you to find the lowest cost. Download the form with the link I am providing to you and there is also a number and email that you can use if you have questions on this program. Hope this helps!

https://www.arikayce.com/pdf/arikares_enrollment_f...

Have you ever had surgery on your lungs? If so, what tips can you share to help others with preparation and recovery?

My Bronchiectasis has improved and my lung specialist has told me my lungs are good but I don't understand why I still get breathless when walking up an incline, or doing chores. (he doesn't have an answer) I accept that I am very mild so why does this happen, specialist seems to think it's because I don't do enough exercise. I walk as often as I can up to 2 klms usually with rests. Could the problem be that I'm 78 and slowing down.

Hello. I am new to this site, but wanted to see if anyone can offer any input about tinnitus. I started azithromycin 500 mg three times per week and after one month, developed tinnitus and have stopped it. Does anyone have any experience with this and any input about whether this will go away or not ? Thanks !

I am at a more advanced stage of bronchiectasis, so I am always looking for ways to reduce inflammation/mucous. I am currently using a Healthy Wave PEMF mat (electromagnetic pulse treatment), which has been helpful in reducing mucous. I also just came across several articles about studies that are being done using ultrasound treatments in Covid patients to help reduce lung inflammation. Attached is a link to a study being done at Univ of California. Univ. of Minnesota has also done a similar study. The study participants are also being given some anti-inflammatory drugs in the California study but not in the Minnesota study. This could be promising.

https://health.ucsd.edu/news/releases/Pages/2021-0...

https://cse.umn.edu/college/feature-stories/ultras...

I read an article that this was a FDA breakthrough therapy. My doctor is unfamiliar with its effectiveness. Have anyone use the drug and been able to discern its effectivenss

Maintaining a positive attitude when you have bronchiectasis and NTM can be challenging. What types of activities bring you joy or improve your mood?

What airway clearance methods, techniques, or devices work best for clearing mucus from your airways?

I have altbuterol sulfate for my nebulizer. The problem is when I use it consistently I begin to have bad side effects. I get very shaky, can't stay asleep, headaches and generally fatigue. What has been found helpful for others. I do take a daily inhaler of Asmanex twice per day.

Am undergoing IV Cefepime treatment with prednisone for pseudomonas pneumonia along with Amikacin nebulizer treatments (28 days on/ 28 days off). Having episodes of dyspnea from walking/talking making it almost impossible to my wear face mask. My nurse friend is telling me it is in my head but prior to this exacerbation I double-masked without difficulty whenever i was in public. Any opinions on how to respond other than avoiding her.

We are currently living in Mass. We are looking at over 55 places in Georgia and Florida

Can anyone recommend a good pulmonologist in Atlanta, Ga. or St. Petersburg, Fla ?

What is the best piece of advice that a health care provider has given you? Do you know anyone else who lives with the same condition? Where do you find support?

I have been diagnosed with a fungal infection in my lungs, so I have been doing a lot of research on colloidal silver. Some people are concerned about the darkening of the skin when using colloidal silver, but the research I have done indicates that happens primarily when people overdose on it. I was going into an exacerbation with non-stop coughing/mucous and was about to call my doc for prednisone and an antibiotic. I had just received a bottle of colloidal silver and had read that it is effective when used in the nebulizer. That night I put 1 tsp in the nebulizer and the next morning woke up with no coughing, very little mucous and feeling great. It was truly amazing. I have continued using 1 tsp 2x a day in neb and feel great - no prednisone or antibiotic. TheSilverEdge.com has a lot of info on the silver and here are some links for anyone interested.

https://thesilveredge.com/colloidal-silver-beats-fungal-infections-fast/

https://thesilveredge.com/can-colloidal-silver-kill-toxic-mold/

https://thesilveredge.com/lungdisease/

https://thesilveredge.com/nebulizing-colloidal-silver-into-the-lungs-to-stop-infection/

My pulmo told me before I show antibodies for aspergillus some years ago but that he wouldn't treat it as we pick it up in the air. I guess its easy to do. Noticing on my ct scan of the end of April that is shows aspergillus on that too. So when I had my bronchoscopy a few years ago whey didn't the sample they took show aspergillus? They said normal flora. I remember 2006 when in the hospital for strep pneumonia and very sick my sub pulmo said I had aspergillus and was giving me a fungal med that started closing up my throat. After getting out of the hospital seeing my regular pulmo he said he doubted I had it then. This all confusing but will bring this up again in August appt.

I was looking at your site about the importance of exercise and Reasons to avoid or stop exercising:

One of the reasons to avoid exercise is if your blood oxygen saturation is below 95% and that you should always use enough oxygen to keep your level above 95%.

When I use a treadmill there is no way I can keep my oxygen level above 64% even with supplementary oxygen breathed in through my mouth and/or nose.

I would rather walk than use a boring treadmill, but do not have a portable machine, so my oxygen drops to 64% for most of the time. I am fairly sure that a pulse oxygen concentrator would not keep my oxygen level above 95% as I am forced to open my mouth to get enough breath to walk at the pace I walk.

Learning that you have bronchiectasis can be overwhelming. What type of physician diagnosed you with bronchiectasis? How were you able to learn how to cope with your condition? Did your physician provide you education on bronchiectasis or did you do much of the research on your own?

When I started with a new pulmo 2014 after diagnosing me with bronchiectasis we talked about zpak weekly but due to hearing loss a side affect of that antibiotic he was hesitant on giving me this. So I had my hearing checked and I had already lost complete hearing in my right ear. So with this information my pulmo decided to give me zpak 3 times a week and have been doing this for quit a few years now to prevent infections. I have not had any infections just a lot of inflammation of which zapk is to help that also. I have had gerd before this diagnoses and after having a appt with a upper Gi dr he did a upper twice and decided that I do show Barret's esophagus so he has prescribed another gerd pill taken at night so that is one in morning and one before bed. If antibiotics affect your stomach a good probiotic will help you stomach but must be taken 2 hrs before the and or 2 hours after. Do not take them together.

I sat around a campfire last night for about three hours. It's the first time I've been around a campfire since I was diagnosed with bronchiectasis. I coughed a good bit during the evening, but I thought I would be fine. I came home, used my nebulizer and went to bed.

I coughed hard for an hour and a half before finally being able to stop. I was also somewhat short of breath. As this is something I have always enjoyed I don't want to want to miss out. I only attend occasionally, but I won't be attending again unless I have an idea how to avoid the coughing and shortness of breath. If anyone has any suggestions I would appreciate hearing them. I'm still short of breath and coughing 12 hours later. The cough is not as gut wrenching, thank goodness.

Franny

Has anyone seen this article that states that United Healthcare is refusing certain non-emergency claims in the ER. If you have bronchiectasis, this is very concerning because, as you know, you can become seriously ill very fast with bronchitis, needing hospitalization, If you happen to get sick on a weekend,which is always when I get sick, your primary is probably not available and an Urgent Care facility is not a good choice. Maybe we should be writing to our Congressman about this. Anyone interested in doing that?

https://finance.yahoo.com/news/united-healthcare-f...

Hello, my mom (71yrs) had a kidney transplant 7 years ago. She has recently been diagnosed with NTM and MAC. She has been doing breathing treatments for the last 3 months but the MAC is spreading and they want to start her on medications. Since she is on immunosuppressing drugs, she can't be on "normal" drugs to treat NTM/NAC. They want her to be in a trial for Clofazimine. Has anyone been on this drug? Any information you can pass on to me? Also, she is seeing a pulmonologist at Denver Jewish Hospital but is having trouble finding a Kidney transplant doctor that has treated patients with NTM/MAC. Does anyone have any kidney doctor recommendations? Thanks!

I am fairly new to this site, and I just saw the post about starting a video chat group for people dealing with bronchiectasis about 8 months ago. Was that ever done?

What hobby do you enjoy the most? Do you have any activities that you turn to for stress relief?

For those of you that have received your Covid vaccine, have you been able to enjoy more “peace-of-mind”? What activities are you planning to do now that you are vaccinated?

I have Bronchiectasis and have had an uncontrollable cough for years. I nebulize saline and use albuterol and symbicort daily with minimal results. What really works for me is a low dose of Tramadol every six hours. I now have a cough I can live with.