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

Posted by lbsaathoff @lbsaathoff, 2 days ago

Hello All. I am very happy to have found this group. I am awaiting my cultures but I have been advised to expect an NTM diagnosis. My nodules and other pulmonary changes were found incidentally with a Calcium scoring test.
I am 68 y.o. “healthy” female and my entire adult life has centered around an active and healthy lifestyle. I run, swim, bike ride with my husband and it’s what our life is all about. Since my diagnosis, I am in an extreme state of anxiety and panic and cannot “settle myself down”. I am not sleeping well and I have a horrible knot in my stomach.
I am filled with grief and sadness. I am overwhelmed by the amount of information and now feel completely constrained from living a normal life. I’ve ordered .2 micron filters for the tap and my shower as well as the Life Straw and Steri Pen. I am terrified now to do anything- go out to eat, shower, ride my bike if windy and chance of dust blowing.
I guess my question is related to feeling this way and I wonder how long this stage lasts until I can find a balance and some type of normalcy. At this point, I do not see how I am going to deal with this diagnosis and enjoy my life. Please share how you were able to deal with these feelings and any tips to get out of this horrible state of mind. Thank you all so much, Lynda Saathoff

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Sue, Volunteer Mentor | @sueinmn | 12 hours ago
In reply to @mjb24 "For anyone considering the Pari eRapid, keep in mind they recommend changing out the handset every..." + (show)
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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.

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@mjb24 My handset is still functioning perfectly after more than one year. I see no reason to replace it until that changes. We bought replacements for about $125 each while there was a 30% off sale this past winter, they are still on the shelf.
The cumulative time savings is worth it for us.

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lizjlb | @lizjlb | 10 hours ago
In reply to @linda1334 "@sarahlynn1960 I don't have a Pari E-rapid because I nebulize and do my aerobika at the..." + (show)
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@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.

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@linda1334 how do you use both at same time?

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lbsaathoff | @lbsaathoff | 10 hours ago
In reply to @pmmar1 "@lbsaathoff Thank you too! With a positive outlook, life can be so much easier. There will..." + (show)
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@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.

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@pmmar1 Thank you so much! You are so right about the mind playing tricks on us. That has been my challenge thus far but with all the positive input from this group, I’m trying to change that!

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lbsaathoff | @lbsaathoff | 10 hours ago
In reply to @linda1334 "I was diagnosed in 2023 with bronchiectasis and MAC. It took me a while to find..." + (show)
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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.

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@linda1334 Thank you Linda! I’m hearing so many positive comments about how adjustments are made but otherwise life continues on as before. So good for me to hear and now I need to soak it in and believe it!

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linda1334 | @linda1334 | 6 hours ago
In reply to @lizjlb "@linda1334 how do you use both at same time?" + (show)
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@linda1334 how do you use both at same time?

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@lizjlb You attach an AeroEclipse XL nebulizer cup to the other end of the Aerobika. Then the tubing is attached to the bottom of the nebulizer cup and of course, the compressor. The mouthpiece is on the Aerobika. You just inhale through the mouthpiece on the Aerobika slowly and, I hold it for about 3 - 5 seconds, then exhale through the mouthpiece again of the Aerobika. I believe quite a few people in this group do it that way. You can get the nebulizer cups from a number of places online. Just google AeroEclipse XL nebulizer cup and you'll see results from a variety of places.

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