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MAC: Anyone ever felt pain from MAC? So many questions

Posted by jr2366 (Jennifer) @jr2366, Dec 17, 2020

I was just diagnosed with Mac lung disease Just few weeks ago I would like to know if there’s any body who can give me some positive advice for me as I’m just learning about all this I’m currently on medication it’s an inhaler daily for this which I only started 2 days ago I have a year to 18 months to stay on this dr says. Medication is called Arikayce has anyone else been in this medicine ? I was wondering has anyone ever felt pain from MAC also. So many questions I’m sorry but any advice would help a lot thanks Jennifer

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Arlo | @equanimous | Feb 22 10:54am

Hi Jennifer,
Nebulizing is a form of airway clearance because doing it with the 7% hypertonic saline causes me to cough up mucus. And, I consider any form of mucus expulsion to be airway clearance. Along with nebulizing, I use an airway clearance device called Aerobika. You may already be familiar with it. But, just in case you are not, here is information:

https://www.mountsinai.org/files/MSHealth/Assets/HS/Locations/Respiratory-Institute/Using-the-Aerobika.pdf

I use a Pari LC sprint nebulizer. I connect my Aerobika to it and am able use my nebulizer and Aerobika simultaneously. I love this because it saves time and is a very effective way to do airway clearance. Here is a youtube that will explain: https://youtu.be/XKBd_hJVsik?si=5usOHTKwc1OW47RZ

Last but not least, here is a very informative site that was kindly given to me by another well-informed group member. It explains airway clearance devices and techniques:

https://bronchiectasis.com.au/resources/airway-clearance-videos

I am so glad you have found this group. I was clueless when I first was diagnosed with MAC and BE. This group is worth it's weight in gold as I have learned an incredible amount from its members.

I hope this helps shed light on a challenging topic. Best of luck to you. I am sending healing vibes your way!
Arlo

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ljostroga1973 | @ljostroga1973 | Feb 23 8:09am

Best thing I did was find Lung Matters on Facebook. It follows the National Jewish Hospital protocols. It will answer all your questions

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reneemc | @reneemc | Mar 14 2:59pm
In reply to @sueinmn "Hi Renee, Are you seeing a medication-oriented doc, or a pain management practice that will incorporate..." + (show)
@sueinmn

Hi Renee, Are you seeing a medication-oriented doc, or a pain management practice that will incorporate many tools in your pain control "arsenal"? There is a huge difference.
I was seen in a pain rehab practice for chronic pain related to years of coughing (bronchiectasis, asthma and MAC) as well as arthritis, hyper-reaction to painful stimulus and a host of other issues. Management consists of a combination of strategies - visualization, relaxation, acceptance, stretching, exercise, massage and myofascial release, rest and counselling, along with medication management (of all meds). It has been a journey, but I do well now as long as I don't pretend to be the "energizer bunny."
Good luck working your way back to a more normal you - like living with bronchiectasis, it is a process and you are the main one doing the day-to-day work.
Sue

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Saw the pain Dr, sending me for an MRI . Gave me Gabapentin and Tylenol 4

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reneemc | @reneemc | Mar 16 1:00pm
In reply to @moonie979 "I have been my mom's caretaker since 2019 when she was put onto hospice because of..." + (show)
@moonie979

I have been my mom's caretaker since 2019 when she was put onto hospice because of her MAC. She had so much pain that it could not be controlled. Fast forward to now. She's nearing the end of her life, after coming off of hospice after 11 months and fighting so hard. She has end stage COPD along with her MAC. We had got the MAC to go away at one point with just azithromycin and ethambutol because she couldn't tolerate arikayce, amicaycin, rifampin or anything else. Now it's back with a vengeance and the pain that comes along with it, is so severe for her because of the lesions it creates. Amicaycin is great for MAC because MAC creates a hard shell over itself on your lungs while it eats at your lungs. Amicaycin softens that shell so the medicine can get to it. However, with her having COPD/emphysema so bad the amicaycin was putting too much vapor in her lungs and making her feel as if she was drowning. Her pulmonologist said that wasn't true but we had an ER dr xray her lungs as she did a treatment and they saw what she meant. As for the pain, the pain meds she gets don't help these days. She's battled hard and lasted longer than doctors ever expected. She was on the transplant list for new lungs but since her MAC came back, she's deteriorating faster so they removed her. She still wants to fight and I will give every ounce of myself to help her do that.

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Your post terrifies me

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moonie979 | @moonie979 | Mar 17 9:32pm

My mom passed 2-13-24.As she neared the end, she told me during one of her "awake" moments, that she no longer felt the pain. That time was the hardest thing I have ever experienced. I'm sad cause I miss her like crazy but I'm happy because she doesn't have to hurt anymore.

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