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I am 80 and have decided not to take the antibiotics. I do have a CT scan and other testing at NJH every 6 months and am having no major problems at this point (diagnosed in 2023). I have tried the antibiotics but had unwanted/rare side effects from one in particular and decided I wanted to have a functional life rather than living out my life being more miserable. I also have 2 fungi.
No one knows the years we have left even when we don't take antibiotics but that may appear an easy answer, given my age. I do the daily Aerobika without saline or Albuterol. Unfortunately, I have hemoptysis when adding the latter mentioned -- and even when I don't. (I've had 2 episodes in the past 4 weeks, which isn't unusual when you have BE and MAC like me).
I walk a mile and sometimes more a day and for the past 20 years I've been on a Mediterranean diet. I do tire easily and take time for a nap here and there and have minimal coughing, making it difficult to obtain the samples I send to NJH and, thus my walking almost every day, depending on Colorado weather, helps with airway clearance.
I do not have children and wear a mask when I go to the grocery or am around a lot of people and am able to have a reasonably functional life otherwise. I will go to restaurants but not to crowded theaters or places such as those.
Most doctors allow us to be "captains of our own ships." I believe this is the best decision for me, as my doctor does, but I support others who have made their own choices. Wishing you the best as we journey together!
Replies to "I am 80 and have decided not to take the antibiotics. I do have a CT..."
Thank you for sharing.
You did give the antibiotics a go and then made your decision.
With my feeling well, no fatigue, eating healthy, similar to the Mediterranean diet, doing airway clearance and exercising with no problem, good pulmonary function test, I am able to do all I need to do for myself for the BE/MAI etc. etc. I just haven't built a wonderful "brick house" but have the hot water tank turned up and the aerators off of the faucets and boil all waters. It is just the clearing of my 'throat' nearly all the time, which does bring up clear mucus most of the time and other times a light colored mucus, mucus plugs and all the other substances like moisture and saliva etc.
I was diagnosed with BE in 2022 by my primary doctor via C Scan and confirmed all in Oct. 2023 by NJH. Small amount of MAI. I started telling my primary doctor something was wrong and that I was bringing up a small deep colored section of mucus, that started in 2018. It took a 25 lb weight loss for him to say: "We need to do a C Scan." I still feel as well as I did prior to 2018.
P.S. I am ahead of you by two years, I'm 82. Always good to hear from those in my age category to know how they are doing etc.
Yes, thank you for "captains of our own ships."
Barbara
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You are an inspiration @pmmar1
I think you're doing everything exactly right and prioritizing your health.
@blm1007blm1007 It's such a personal choice in deciding whether to go on the medication—and that was what was stressed at the conference. Dr. Marras from Toronto gave a presentation about the 'algorithm' he uses to make the decision on whether to treat, but in the end, the doctors agreed it's a subjective decision that also involves the patients' own wishes, what seems medically necessary depending on the severity of symptoms, bacteria involved and condition (cavitary vs nodular) and so just seems to depend on a lot!
What Dr. Addrizzo-Harris did tell me was that all of the new centers that are being accredited to treat BE patients must adhere to the same method and approach. One requirement is that the BE doctors at each treatment center meet as a team weekly to review and discuss their patients' records. They must reach a consensus about how to proceed with each patient which takes the 'subjective' piece—based on each doctor's individual experience—out of the equation. It gave me a lot of peace of mind to know that there is thoughtful discussion happening between the doctors. Also, that less experienced doctors are able to gain experience through that process and unique scenarios or outlier cases are heard which leads to learning.