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

Posted by lbsaathoff @lbsaathoff, 3 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

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

Profile picture for linda1334 @linda1334

@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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thanks. can you send me a pic of it all attached? @linda1334

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Profile picture for lizjlb @lizjlb

thanks. can you send me a pic of it all attached? @linda1334

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@lizjlb csn you send me a pic of it all attached? thanks

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Profile picture for linda1334 @linda1334

@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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@linda1334 can you send me a pic of all attacked. thanks.

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Profile picture for Mary @mjb24

@sueinmn That is good to know. I wonder why the recommendations to replace every so often. The same with the various nebulizer cups and the Aerobika. I use the eRapid only for Arikayce and they send new aerosol heads to change out weekly and new handsets monthly. It seems like a waste but that is their explicit instruction. I am really curious, would it be for sanitation, even though the parts are rinsed, soaked and sterilized after every use?

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@mjb24 Arikayce is rather dense for an inhaled medication, so my guess would be that people have experienced clogging or reduced output. A few members here have mentioned that they save the old heads and use them to nebulize saline.

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Yikes. I was just diagnosed with mild bronch--no symptoms, no idea if infected but my sister has NTM at a scary level. My mom died I believ of effects of NTM but had been over radiated in the 60s for breast cancer. I am terrified--maybe for no reason but told in the interest of caution not to do many of the things I love--steam showers, hot tubs, I have a pet parrot, love to garden. Cannot expen anything from my lungs. But I want to keep it safe even if not infected. QUESTION: Instead of boiling water, which I have not been told to do at this point, will a home water distillation system work for drinking and cooking water? Seems like it should and much better than boiling and probably less in the long run than using distilled water.

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Profile picture for lizjlb @lizjlb

@linda1334 can you send me a pic of all attacked. thanks.

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@lizjlb Actually I do something better. Here is a link to a video made by one of our group members, @bronchiectasaurus. She goes through the whole process of how to connect the equipment and complete the nebulizing. https://connect.mayoclinic.org/discussion/short-video-on-nebbing-saline/ It was very helpful for me and I'm sure a lot of other group members.

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Hi. I'm fairly new to a bronchiectasis diagnosis. It's been about 18 months since it was spotted on a totally unrelated CT scan as is often the case. I remember my anxiety going through the roof while waiting to see my specialist. My life was over as I knew it. But 18 months later my life has barely changed. I do everything I did before and the only thing my doctor has asked me to do is use the aerobika on a regular basis. I understand that is to keep stuff from making itself a home in my lungs and causing a future problem. Obviously I can't say its going to stay that way and I pretty much expect it will get worse over time - maybe, maybe not but I don't even think about it right now. I see my specialist every six months and it will be interesting to see if I can even produce a sputum sample at my next appointment in September. I am 68.
Obviously everyone is different and has different symptoms and severity of the disease (and maybe dealing with other complications at the same time) but for me, right now, it is not affecting my day to day activities.
By coincidence my older sister (70) had the same diagnosis 4 years ago (she is in the UK I am in the USA) and her specialist does not have her do any kind of airway clearance other than showing her how to huff cough. But then that's socialized medicine for you LOL.

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Profile picture for linda1334 @linda1334

@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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@linda1334 is this better than a reg nebulizer cup, like 4 pieces?

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