Daughter diagnosed with bronchiectasis at 21.

The more proactive the better especially with a progressive non-reversible disease like bronchiectasis.

Has your daughter had a through work-up? Since she gotten so sick as a young person perhaps she should have her immune system tested, which is a simple blood test before and after the pneumonia vaccine. Included in the workup would be a visit to the pulmonologist. There they could test her sputum to see if anything is growing, and get a baseline on how well she is breathing through pulmonary function testing. All of this is pretty quick and noninvasive. Let's hope she does not have MAC but you'll never know unless she's tested.

You might want to consider having genetic testing for cystic fibrosis. It is becoming increasingly common for older people to test positive for various, atypical mutations which can cause symptoms of CF. My mother was diagnosed, thru genetic testing, at age 68. I was found to have one positive gene and another for cilliary dyskinesia. I have developed bronchiectasis and am seeing a pulmonologist at Mayo that specializes in CF. I am considered to be "on the CF spectrum".

@leemoore13 We all want our children to enjoy their youth, but the fact is, with a chronic disease, whether it is diabetes, asthma, Cystic Fibrosis or Bronchiectasis, the care they take now will affect their lifelong health and their longevity.
My 44 year old daughter certainly wishes she didn't have to nebulize daily, take a biologic medication, and plan scrupulously for any trips to altitude, and stay clear of people with respiratory illnesses, but with brittle asthma, and now bronchiectasis, if she wants to continue to live, all of these precautions are vital. Her very good friend sure wishes he had been more diligent in managing his Type I diabetes as a teen, because he has had numerous strokes, is nearly blind and has neuropathy - so his life is seriously limited at 44.

I suggest your daughter be seen by a pulmonologist who specializes in Bronchiectasis, and learn what steps she needs to take to stay healthy for as long as possible. For example, inhalers and daily airway clearance can halt or slow the progression of Bronchiectasis, and can easily become part of her daily self-care routine.

Sue

I’m sorry to hear about your daughter. I agree with everyone else on this forum that seeing a doctor who specializes in Bronchiectasis is key. It took me six months to see Dr. Pamela McShane at UT Tyler (five hours away from my home). She is an expert in this condition. That was a life-changing appointment. While Bronchiectasis has not been officially ruled out for me, mine is extremely mild if I have it at all. That is not what my local pulmonologist told me. He led me to believe it was much worse.

Dr. McShane is treating me for Protracted Bacterial Bronchitis (PBB). It’s most often seen in children, but research is beginning on adults. After three sputum tests to rule out NTM’s I am receiving a six week course of Bactrim for a severe sinus infection and I had Balloon Sinuplasty last week to restore restricted sinus passages. Dr. McShane used the analogy that when your roof is leaking your floor gets damaged. Both she and my ENT think this will be a game changer for me. Not quite one week out from surgery I agree. My lungs feel clearer and my airway clearance does not produce nearly as much as it did before.

In short, travel to see a respected specialist if needed. Build a good team of doctors who will work together on this condition with you and your daughter. Ask questions, do your own research and stay connected to this forum. It is an invaluable source of information and encouragement!

Are you familiar with the medical facilities that specialize in Bronchiectasis and respiratory health problems.
You might ask for this type of information on this blog if you would like others to inform you of these facilities.
I, myself, went to Denver to National Jewish Health. I am glad I went due to the extensive various tests performed to know what may or may not be involved with my health and condition. To have had locally all the tests that they performed would probably have taken months, if not longer to have scheduled and performed at a local hospital. At NJH is was seamless for me and done within a week and a day. With staying in the Cherry Creek area and Denver itself, as a family member said...it was almost like a medical vacation.
Due to the 12 hour drive, from here in OKC to Denver, I will now be going to the doctor mentioned above, Dr. McShane. Found out about Dr. McShane via the COPD Foundation person who has lived with Bronchiectasis for 15 years.
So terribly sorry your daughter has had to deal with so much so early in life. Hope she is able to see her way clear to do all she needs to do for herself and still find ways to travel comfortably. Not an easy task for any of us with chronic health conditions.

How do you manage Bactrim for 6 weeks at what dose? What bacteria do you grow?

Nothing grew in my sputum samples. Bactrim is a broad spectrum antibiotic to treat the sinus infection. Unfortunately, I’m allergic to penicillin. So far I’ve been on it for 3 weeks with absolutely no problems. I take it twice a day with a meal and a probiotic in between doses. My gastroenterologist recommended Endomune Probiotic and told me to take it for two months following treatment. I also have been told by two of my doctors to drink a lot water while on this medication.

Thank you. Is Bactrim regular or Bactrim DS 800mg? I'm on it now and it is hard on me. How is the Probiotic you mentioned? Does it really help? There are many probiotics out there and hard to choose which one is good. I use the jelly kind from Sam's club.

Yes I am on Bactrim DS 800mg twice daily. My gastroenterologist told me that the probiotic would help. Since I haven’t had any problems I believe he was correct. He gave me three brands that he thought would be best. I chose Endomune Advanced after researching the three options. It doesn’t have to be refrigerated which is helpful to me and it contains ten strains. I got mine on the health food aisle of my grocery store, but it’s also available on Amazon. Just make sure you don’t take the antibiotic and probiotic at the same time. That will decrease the effectiveness of the probiotic.

Thanks so much for that very helpful information....as we live in Ireland I need to research this, but definitely will talk to her about the benefits of acting sooner rather than later....