Frequency of Pneumonia with Bronchiectasis

Posted by 1954cheryl @1954cheryl, Aug 29 11:28am

Hi Everyone,
I am new to the group and was diagnosed with Bronchiectasis about a year ago. I have had pneumonia last Dec., this April and again in August. So far, that is 3 times in eight months. This time in Aug. I did better with getting an antibiotic sooner than the previous times, thanks to the wonderful advice from Queen City Walker. So, I'm still learning. I do have a first-time apt. with a bronchiectasis specialist next month. My question is to those with bronchiectasis – how often do you get pneumonia in a year's time? I am wondering is this my life now. I do lung clearance daily and use albuterol twice a day, also breo-ellipta for asthma. Btw, the last two times occurred around vacations.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

p.s. last two times I got pneumonia on vacation where I did a lot of swimming in the ocean. Is swimming in the ocean risky? I take care to avoid getting water in my mouth and nose.

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@1954cheryl

p.s. last two times I got pneumonia on vacation where I did a lot of swimming in the ocean. Is swimming in the ocean risky? I take care to avoid getting water in my mouth and nose.

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Hello Cheryl, and Welcome to Mayo Connect and our MAC & Bronchiectasis group. Not a group any of us are happy to be in, but a wonderful group of helpful people.

I'd like to reassure you that swimming in the ocean is unlikely to be causing pneumonia. I am wondering if you were also relaxing in hot tubs? Or getting off your regular routine, getting overtired and being exposed to different germs?

Before my diagnosis 4 years ago with MAC & Bronchiectasis, I was getting serious bronchitis attacks or pneumonia 3-4 times a year for about 5 years. When the pulmonologist met me, he ordered tests to see what bacteria was in my lungs…and MAC and pseudomonas infections were diagnosed. These don't show up in routine tests, just sputum cultures that take time to develop.

Since I was treated for both infections, and stopped antibiotics 20 months ago, I settled into a routine of inhalers, airway clearance & 7% saline nebs. Since then I have had 2 mild exacerbations, each treated with a short course of prednisone & once a short course of antibiotics. In addition, my asthma is well-controlled.

I think you are on the right track seeing a specialist to get a clear diagnosis.
Sue

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Thank you so much Sue. So glad to hear swimming in the ocean is okay because I really love doing it. My last sputum test on 6/22 showed stenotrophomona which I have had since my diagnosis, and aspergillus which is new. My pulmonologist said they wouldn't treat it unless I have symptoms even though my mucous changed to a greyish color. Seven weeks later I had full blown pneumonia. I think maybe the 7% salt neb would be in order and I will discuss with the specialist. I have albuterol for nebulizer, but I like the salt idea much better. Thanks again for letting me know your experience. It helps a lot to know what others experienced.

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@1954cheryl

Thank you so much Sue. So glad to hear swimming in the ocean is okay because I really love doing it. My last sputum test on 6/22 showed stenotrophomona which I have had since my diagnosis, and aspergillus which is new. My pulmonologist said they wouldn't treat it unless I have symptoms even though my mucous changed to a greyish color. Seven weeks later I had full blown pneumonia. I think maybe the 7% salt neb would be in order and I will discuss with the specialist. I have albuterol for nebulizer, but I like the salt idea much better. Thanks again for letting me know your experience. It helps a lot to know what others experienced.

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Albuterol is a bronchodilator, whereas the 7% (also called hypertonic) saline, in addition to thinning mucus to make it easier to cough up, actually is inhospitable to some of the bacteria that plague us. It suppresses growth of most Mycobacteria, pseudomonas, and possibly its relative stenotrophomona. I didn't find any literature, but about saline and aspergillus.

Most of us use a bronchodilator before the saline – when I was having more issues, I nebbed levalbuterol first, then the saline. Now I take my Symbicort, which is long-acting, first thing in the am, and later do my airway clearance. Right now my mucus is sparse and clear- even thought it the heighte of allergy season for me – I can even be outdoors until the wind sterts blowing pollen in my face.

P.S. My results have made 7% saline believers out of my primary and ID doc, and have halfway convinced my pulmonologist.

Good luck on you visit in September.
Sue

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I am glad things have improved so much for you. It gives me hope too. Is the 7% salt a prescription or over the counter?

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@1954cheryl

I am glad things have improved so much for you. It gives me hope too. Is the 7% salt a prescription or over the counter?

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7% saline is available by prescription or over the counter, but Rx is usually much cheaper. If you are on Medicare, it is covered by Part B because it is dispensed by a device (not Part D for prescriptions.) You often have to be assertive to get it – mine is between $7-14/for 60 vials, depending on where it is filled. I have paid a lot more, up to $50 – when I believed the pharmacy tech who told me it wasn't covered.

Sue

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@sueinmn

7% saline is available by prescription or over the counter, but Rx is usually much cheaper. If you are on Medicare, it is covered by Part B because it is dispensed by a device (not Part D for prescriptions.) You often have to be assertive to get it – mine is between $7-14/for 60 vials, depending on where it is filled. I have paid a lot more, up to $50 – when I believed the pharmacy tech who told me it wasn't covered.

Sue

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Thanks again. This is very helpful.

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@sueinmn

7% saline is available by prescription or over the counter, but Rx is usually much cheaper. If you are on Medicare, it is covered by Part B because it is dispensed by a device (not Part D for prescriptions.) You often have to be assertive to get it – mine is between $7-14/for 60 vials, depending on where it is filled. I have paid a lot more, up to $50 – when I believed the pharmacy tech who told me it wasn't covered.

Sue

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Interesting, sue. I too was told the saline was no longer covered by Medicare part B. Who did you contact to make it happen?
Thank you

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@sueinmn

7% saline is available by prescription or over the counter, but Rx is usually much cheaper. If you are on Medicare, it is covered by Part B because it is dispensed by a device (not Part D for prescriptions.) You often have to be assertive to get it – mine is between $7-14/for 60 vials, depending on where it is filled. I have paid a lot more, up to $50 – when I believed the pharmacy tech who told me it wasn't covered.

Sue

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I, too, am new to your group and was told by several people that 7% saline is not covered by Part B. I fortunately was able to get 180 vials at Walgreens for about $20 with a GoodRx coupon. Please let me know how you found out it is covered, although it sounds like it is actually more expensive using Part B! Thank you so much for all your helpful advice. Donna Turnbaugh

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@calinski420

Interesting, sue. I too was told the saline was no longer covered by Medicare part B. Who did you contact to make it happen?
Thank you

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The "Medicare Team" at Blue Cross – listed on my insurance card.
UGH!!! Life shouldn't be this hard.
Sue

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@sueinmn

The "Medicare Team" at Blue Cross – listed on my insurance card.
UGH!!! Life shouldn't be this hard.
Sue

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I agree! I was told that it is covered by the person I talked with at Medicare, but only at Lincare and CVS in my area. Both a Lincare and a CVS pharmacist told me that it is not covered! I finally gave up and bought it with GoodRx.

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@donnaturn

I, too, am new to your group and was told by several people that 7% saline is not covered by Part B. I fortunately was able to get 180 vials at Walgreens for about $20 with a GoodRx coupon. Please let me know how you found out it is covered, although it sounds like it is actually more expensive using Part B! Thank you so much for all your helpful advice. Donna Turnbaugh

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In reply to @donnaturn….. I do not pay anything through pt. B for the 7% solution but my pharmacist had to talk directly with my pulmonologist’s office at Mayo for the script to be accepted by Medicare. It took a few tries for Mayo to get the script written exactly as it needed to be. Unfortunately, I don’t know the exact wording but maybe your pharmacist would?

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