Hello everyone! What's new with you?

Posted by Terri Martin, Volunteer Mentor @windwalker, Mar 16 10:39am

Hello everybody! How is everyone doing? I have missed you guys. As for me, I have been MIA for a spell due to battling a small lung infection in Jan/Feb. I am all better now. What have you guys been up to? I have been working on the interior of my home. Replaced the wall-to-wall carpet with 8″ plank vinyl flooring that looks like reclaimed wood. It looks awesome! Repainting the interior all bright white and updating some other things. As you all can imagine, with limited energy, it all takes twice as long to do. Got my 1st covid vaccine shot last week and will get the second one April 1. Yay!!! Have my annual Mayo appt in June. I would love to hear what everyone else has been up to.

We have surely missed you Terri – welcome back! Glad to hear you have enough energy to tackle your home projects.
I'll bring you up to date soon – right now I'm on a break from packing to spend a few weeks at our Texas home – excited to finally be getting "on the road again"
Sue

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@windwalker
Hi Terri, I'm glad that you are feeling better! Welcome back to Connect.

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Morning. I have had this mac for 25 years. Fifteen years it took before they knew what it was. I went on the big 3 ,10 years ago. After that I was able to coff up and clear my lungs. I been on azitromycin for the past 5 years off and on as needed. More like a maintenance dose to keep mac at bay. Now it seems like the drug is not working and the mac is in control. I have 2 spots on my lung which are mac.My dr trys his best but he is lost now because there does not seem to be any other anitbotics that work on mac. He put me on Doxycycline fo 14 days. I can tell this not working because i am not able to bring up any flem. I use the 7% salt usually 3 times a day. Is there any other antibiotic that could work on mac? Sorry for the spelling but u get the drift of my story. Just so everyone knows xrays do not show mac. I got one the other day because i swore i had a rock in my long just like phemonia. I must have an xray pile 2 in thick and they say no mac. But the broncho scope and the ct show the mac. Thanks for u al and glad u are back Terri. Garry Canada

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@garry

Morning. I have had this mac for 25 years. Fifteen years it took before they knew what it was. I went on the big 3 ,10 years ago. After that I was able to coff up and clear my lungs. I been on azitromycin for the past 5 years off and on as needed. More like a maintenance dose to keep mac at bay. Now it seems like the drug is not working and the mac is in control. I have 2 spots on my lung which are mac.My dr trys his best but he is lost now because there does not seem to be any other anitbotics that work on mac. He put me on Doxycycline fo 14 days. I can tell this not working because i am not able to bring up any flem. I use the 7% salt usually 3 times a day. Is there any other antibiotic that could work on mac? Sorry for the spelling but u get the drift of my story. Just so everyone knows xrays do not show mac. I got one the other day because i swore i had a rock in my long just like phemonia. I must have an xray pile 2 in thick and they say no mac. But the broncho scope and the ct show the mac. Thanks for u al and glad u are back Terri. Garry Canada

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hi Garry – I am curious how old you are ?

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Well I feel like 100 but I will be 71 in june

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@garry

Morning. I have had this mac for 25 years. Fifteen years it took before they knew what it was. I went on the big 3 ,10 years ago. After that I was able to coff up and clear my lungs. I been on azitromycin for the past 5 years off and on as needed. More like a maintenance dose to keep mac at bay. Now it seems like the drug is not working and the mac is in control. I have 2 spots on my lung which are mac.My dr trys his best but he is lost now because there does not seem to be any other anitbotics that work on mac. He put me on Doxycycline fo 14 days. I can tell this not working because i am not able to bring up any flem. I use the 7% salt usually 3 times a day. Is there any other antibiotic that could work on mac? Sorry for the spelling but u get the drift of my story. Just so everyone knows xrays do not show mac. I got one the other day because i swore i had a rock in my long just like phemonia. I must have an xray pile 2 in thick and they say no mac. But the broncho scope and the ct show the mac. Thanks for u al and glad u are back Terri. Garry Canada

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@garryAsk your doctor to start you on Arikayce. It is effective against refractive MAC ( MAC that doesn’t respond to other treatments.) @irene5

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@windwalker Hi Terri! Glad your back! Wondered where you've been and if you're doing OK. Glad to hear your infection is gone and your getting work done on your house. Nan

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I mentioned Arikayce to him the other day. Is it a TB drug? He had a reason why he didn't want to use it. They may have to get permission to use a TB drug. I will try again with him. thank u

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@garry

Well I feel like 100 but I will be 71 in june

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@garry MAC will do that to you! Not funny ha ha, but it did make me smile. I’m growing old waiting to be rid of it! @irene5

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@garry

I mentioned Arikayce to him the other day. Is it a TB drug? He had a reason why he didn't want to use it. They may have to get permission to use a TB drug. I will try again with him. thank u

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@garry Arikayce is not a TB drug. It is an inhaled medication used for MAC. It requires a doctor to fill out paperwork and follow you closely if you are in a year long trial of it. It is expensive. Mine is covered because I am in a clinical trial. One large node resolved after only three months on it. I have hope and see a light at the end of a very long tunnel because of it. It will be a year on June 8 that I started it. I have had MAC since 2015 and probably earlier but wasn’t diagnosed till 2015. Good luck. @irene5

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Thanks I will talk to my specialist in Kelowna.

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Hi, I had Mac for at least 15 years , it waxed and waned with a dry cough. I have some bronchiectasis ( not a lot) and scarring from pneumonia. I had a bronchoscopy, sputum test and biopsy in 2018 that showed MAC. I've gone on saline and things look better now on the CT scans, some of the small nodules have gone away, but a year ago I got a whole new type of lung discomfort that persists through today. — Following the flu in January 2020, I developed a very productive cough (as compared to the dry cough of preceding decades), which has persisted since then (over a year now). It gets very intense at bedtime when I lie down, sometimes after I eat, I have post nasal drip (never had it before) at night when I'm lying down, my eyes run when I wake up. I cough so hard sometimes in daytime that I vomit or pee on myself (embarrassing and gross), have big spasms.. These are very different symptoms from previous 15 years. But, my CT scans in April 2020 and March 2021 look very good compared to previous years. My PFTs are not quite so good this year, but I am almost 71 and have some lung scarring. Last week my lungs hurt so much and I was coughing so much, I took a Z pac–azithromycin, and I felt much better, which is now wearing off. I think it was due to anti-inflammatory effect of the drug, not the antibacterial qualities, but it is one of the drugs Im susceptible to according to sputum tests os I dont want to "waste" it. I had one doc tell me I had GERD– but I had an upper GI endoscopy and GI doc said she didn't see signs of it. . My new pulmo offered to put me on a "maintenance dose" three times a week of azithromycin to calm down my lungs. I fell so much better after taking the Z=pac Im tempted. Not sure what to do. Any ideas out there re "maintenance" on Azithromycin? I know they give it to COPD patients for its anti-inflammatory effects. I've had lot of fear and caution put in me re taking these drugs and then if MAC gets worst I won't have anything to cure it,

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