How does bronchiectasis progress?

Posted by @ling @wangling, Mar 31, 2023

Hi all,
As I am reading, that bronchiectasis is a chronic and progressive disease.
How does it progress based on your experience? I seem to remember that some people are able to keep the condition stable. Does cough make the condition worse?Your experience is greatly appreciated.
Thanks!
Ling

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@liz440

even cheaper today. $5.30. It's through Amazon Pharmacy and you have to have a prescription transferred to them (they will do it as I remember) https://pharmacy.amazon.com/Chloride-Generic-Nebusal-Inhalation-Solution/dp/B0B49VMXMD?ref_=sr_1_3&s=amazon-pharmacy&keywords=sodium+chloride+3%25&qid=1682642552&sr=1-3/dp/B0B49VMXMD?ref_=sr_1_3&s=amazon-pharmacy&keywords=sodium+chloride+3

Don't pay attention to the picture. I received vials. Nephron Co.

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Thank you. I had no idea Amazon had a pharmacy. This is good info to share with others.

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I just received 3% saline from Kaiser. This will be my first time using it. After getting the box home I realized they sent me a box of fifty vial - each vial contained 15ml. My Rx says to use 4 ml twice a day.
I called the pharmacist, asking what to do. He said I had to throw the unused portion away. He checked with Kaiser to ask why they sent such big vials. He said it was because there is a shortage and this was a way to get the product to me. I paid $30 for something , half or more of which will be tossed away. Is it me, or is this a bit weird?

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@equanimous

I just received 3% saline from Kaiser. This will be my first time using it. After getting the box home I realized they sent me a box of fifty vial - each vial contained 15ml. My Rx says to use 4 ml twice a day.
I called the pharmacist, asking what to do. He said I had to throw the unused portion away. He checked with Kaiser to ask why they sent such big vials. He said it was because there is a shortage and this was a way to get the product to me. I paid $30 for something , half or more of which will be tossed away. Is it me, or is this a bit weird?

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That happened to me once and NP suggested using it up over 2 days. She said keep it upright and the top covered with plastic wrap and that it should be fine. I also do this with an albuterol ampule because one whole vial makes me too shaky. I am comfortable doing this but you may not be.

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I picked up my 3% Sod Chlo from CVS today. The box contains 50 vials--each contains 15 mL. I only use 4 mL per treatment so I'll have to just use what I need, put the rest in a zip lock bag till the next treatment. This is not ideal but under the circumstances it is something I can work with. There was a time last year that the same thing happened. By the way the HyperSal that I've had to settle for over the last several months cost almost $40. (each time it came with a Pari neb kit--which I did not need but had to pay for it.) What I picked up today was $3.27.

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@sueinmn

@wangling and @equanimous
Progression in lung disease is a puzzle. I'm not sure anyone has an exact answer, but there are some ways to slow disease progress that most experts will agree on.

First, stop any and all smoking and vaping, or exposure to secondhand smoke.
Second AIRWAY CLEARANCE with 7% saline, if recommended.
Stay as healthy as you can with good diet, rest as much exercise as possible, even when you don't feel like it.
Avoid respiratory infections - stay away from sick people, indoor crowds in flu and cold season, mask when you can't avoid being "out there."
Follow treatment plans including maintenance meds, keeping other conditions under control (asthma, allergies, GERD, diabetes, blood pressure...) to avoid taxing your body.
Keep up with your doctor visits and tests, so changes are identified early and can be treated quickly.
Finally, a positive attitude goes a very long way. It helps keep you moving, and living rather than simply existing.

My mantra: "Bronchiectasis is what I have, not who I am. I cannot cure it, but I can manage it. I am living my best life in spite of it, and the other chronic conditions I have. "
Sue

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Very well stated!

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@fdixon63

I picked up my 3% Sod Chlo from CVS today. The box contains 50 vials--each contains 15 mL. I only use 4 mL per treatment so I'll have to just use what I need, put the rest in a zip lock bag till the next treatment. This is not ideal but under the circumstances it is something I can work with. There was a time last year that the same thing happened. By the way the HyperSal that I've had to settle for over the last several months cost almost $40. (each time it came with a Pari neb kit--which I did not need but had to pay for it.) What I picked up today was $3.27.

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I paid $30 for the same amount thru my Kaiser pharmacy. Are you saying you had your dr send the Rx over to CVS and they charged $3.27? I was thinking when Kaiser told me the price that saline should not be so costly. Thanks in advance for your feedback.

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@equanimous

I paid $30 for the same amount thru my Kaiser pharmacy. Are you saying you had your dr send the Rx over to CVS and they charged $3.27? I was thinking when Kaiser told me the price that saline should not be so costly. Thanks in advance for your feedback.

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Be careful about the 4 ml v 10 or more ml. Walmart had the larger size but would not fill my script because it said 4 ml...Kaiser may be different and I can't speak for CVS but I would ask first before transferring a script there.

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@equanimous

I paid $30 for the same amount thru my Kaiser pharmacy. Are you saying you had your dr send the Rx over to CVS and they charged $3.27? I was thinking when Kaiser told me the price that saline should not be so costly. Thanks in advance for your feedback.

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equanimous - CVS is the regular pharmacy I use so the doc would send the Rx to them routinely. It is funny that the printout of instructions on the box says to inhale 1 vial twice a day. Wow, can you imagine inhaling a 15 mL amount 2 X a day? It would probably take an hour or more. My normal time for 4mL takes about 15 mins. I'm not sure why someone did not question this but I'm not going to complain. I got a lot more that expected and I'll just measure out what I normally use and the rest will be ok for the next treatment. This will last me for quite awhile.

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@fdixon63

leilam, I'm very interested in how many respond to your question. My doctor had given me a "recipe" for 7% but I'm holding off trying it. What if it is, at some point contaminated and you breath some bacterium directly into your lung. We have enough of a problem already without adding to it.

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Fdixon63 - I would very much appreciate it if you would share your doctors recipe for the saline solution. I’ve reached my limit trying to get Medicare part B, or my part D medicine coverage, or even,… Get this, my temporary dual Medicaid coverage to admit the coverage. They point like the scarecrow in the wizard of oz sending me back-and-forth like a ping pong ball between the three of them. Beyond frustrated
Thanks!

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