Newly diagnosed and can’t get a handle on my anxiety

@lbsaathoff
Thank you too! With a positive outlook, life can be so much easier. There will be bumps in the journey, but even healthy people have them. We'll take each day as it comes and be thankful we have another day. We have no control over the future but our minds can play tricks on us, which can be debilitating and make matters worse -- sometimes to the point it's hard to see a "tree from the forest."

If you are healthy otherwise, and it appears you are, please go on with your activities and enjoy your life as best you can. Like me, in spite of what my CT scans/sputum samples tell me, you may be "stable" for years to come. There is no need to waste precious time on something we have little control over.

I tried the Big 3 and Aerobika, the latter making my issue worse because it caused hemoptysis. So I went off of everything and since then I have had three stable years, a blessing! Of course, this does not apply to everyone, but you seem to have a background similar to mine with your exercising and taking care of yourself over the years. Continue on this path and your life will be more fulfilling.

I think I paid somewhere in the $800 range. Way expensive, but I decided to go for it since I’ll be using a nebulizer 2x a day every day forever. I’m using the aerobika after nebulizing, because I heard that it might work better for me to get my lung mucus all wet and “juicy” before trying to vibrate it loose. But I’ve also had respiratory therapists use the aerobika at the same time as nebulizing, and you cannot do that with the Pari e-rapid. I don’t really know which way is therapeutically best, but doing it separately makes sense to me personally.

It irritates me that PARI does not sell the replacement mesh aerosol head separately in the U.S., even though it is available in Europe. Instead, U.S. customers have to buy the entire replacement handset, which drives up the cost of ownership.

Given that the eFlow was introduced nearly 20 years ago, this feels like a commercial decision, not a technical one. To me, PARI is milking the U.S. market with inflated replacement costs, similar to how drug companies price products differently in the U.S. versus Europe.

Users should start asking PARI America to sell the mesh head separately.

@sarahlynn1960 I don't have a Pari E-rapid because I nebulize and do my aerobika at the same time but I'm curious. How much time do you save with it as compared to using a regular nebulizing compressor? I find it takes about a half hour to nebulize the 4ML 7% with my Ombra compressor.

I was diagnosed in 2023 with bronchiectasis and MAC. It took me a while to find this group but I'm really glad I did because this is where I got almost all of my information and education on how to take care of myself. I got all the products you mentioned in your post, the filters for the tap and shower and the Life Straw pitcher and Steri Pen. They've all been very helpful and you're on the right track. I put my bottled water through the Life Straw pitcher before I drink it or make tea in the microwave. I use the Steri Pen in bottles of water that I can use for brushing my teeth since a filter won't fit on my bathroom sink faucet. That's the only thing I wish I could change because it's kind of a pain but not too bad. I do the nebulizing and Aerobika twice a day and I try to get my exercise in daily which is helpful. Although it all takes additional time out of my day, everything else is normal. If I go out to eat, I don't order drinks except maybe spring water. Other than that, there's not much difference. I'm in watch and wait mode now after one round of the Big 3 and then the MAC came back unfortunately. I didn't want to be treated again and I've been stable now for over a year. I feel fine and do all my usual daily activities with no problems. We all have to make adjustments for our own personal routines but you will find a balance I'm sure.

@linda1334 Not Sarah, but my Pari e-Rapid takes between 3 and 5 minutes for 4ml saline, compared to 20 with my De VilBiss Traveler or my big Pari Vios. Per the instructions of my pulmonologist & the recommendation of Dr Pamela McShane, I did not use my Aerobika with the older nebulizers.
So, at a savings of 15 minutes a session, multiplied by a lifetime, the eRapid is my go to, as well as my husband's (we use one compressor with separate nebulizer heads.)

Yes that’s about how long mine takes! Then the aerobika adds a little more time but not a lot. The whole sequence just feels so much more “doable” now to me mentally

Lynda,
I just happened to see on the NTM forum that you are also from NC. I live in Raleigh. I go to the UNC Bronchiectasis specialists in Chapel Hill and see Dr. Despotes. I highly recommend!!

Oh my goodness- that is so good to hear. I was going to ask both groups about recommendations and whether I should plan to make the trip to Denver. I would think that now there are regional centers of excellence that they share protocols. At least I hope that’s the case.

For anyone considering the Pari eRapid, keep in mind they recommend changing out the handset every 6 months and a new handset is $180.00.