(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Kathi(21042) Hi Kathi, I am SO glad you laid your journey out .. this helps not only ME understand it .. BUT it lays it out for future newcomers .. a journey perhaps THEY can relate to .. thank you for taking the time to think it through and present it in such an understandable manner .. it will help future newcomers!

Even if 15 MAC patients is over a period of time .. personally I would be reassured she probably knows her stuff versus SO many doctors I have heard about on this Forum who are nearly ignorant of our disease! Keep in mind about Pseudomonas bacteria .. when I was diagnosed with Pseudomonas Dr. Timothy Aksamit told me that when Pseudomonas is in the lungs it can be "stabilized" but not cured .. that I would need follow up appointments for it with my immune system.

Kathi, I am SO glad you are doing better .. AND that you found our Forum .. yes we do have a wonderfully supportive group of people! See already YOU are contributing .. sharing your journey for newcomers .. that is how we help each other .. all we have to do is be ONE step ahead of a newcomer to be able to "PLAY it forward" .. help them as WE have been helped! That is what our community is all about! Hugs to you! Katherine

@contentandwell .. JK, I agree with you "I wish there was an option to put newer posts first.' .. I understand the IT people have it on their list .. but it is complicated .. other people prefer that posts be placed under an ongoing post/ "subject" etc. Conflicting needs?! I'll mention it to Colleen.

"There is a black round area on it, I presume to attach an air supply. Does it need to be connected to one?" .. the black round area you see is the air vent so that you can breath! I found it really pretty easy to breathe through because of this air vent. Hugs to you! Katherine

Here is the information on the Cambridge Mask from my File Cabinet:
TRAVEL-MASK and Air Supply Mini-Mate Personal Ionic Air Purifier--Black I was traveling to a VERY air polluted area .. I did a LOT of research and found there was a BETTER mask than the 3M N95 mask .. PLUS could looked kinda cute! I found it decent to breath with. I now will carry it as needed.

CLEANING Washing Instructions – can I wash the mask? Yes, you can CAREFULLY hand wash it with some mild soap. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.

SIZING We have found that the best way to choose the mask is by weight. MEDIUM: 33 – 64kg= 73 to 141#

*REPLACMENT TIME How long can I use it? Cambridge Masks™ are non-disposable, meaning that you can use them for potentially hundreds of hours. The length of time they are suitable for depends on how polluted the environment is when you use it. A table is provided below, but a “rule of thumb” (a guideline) is that you can use the masks on a regular basis for 3-6 months before it needs replacing. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.

Thank you. I haven't gotten an appointment yet. Hopefully soon. And hopefully I will like him and be able to feel confident in him. I'll keep you posted.
Gina

I have a question uf anyone can answer this for me..three years ago..diagnosed with MAC..Pulmonary Dr thought it was cancer when ge looked at chest exray...but did bronchial biopsy and continueed to be negative. ...Dr put me on antibiotics for one year i took them...He did blood work and sputum tests off and on during that time..The last time ..I suggested a CT to see if any of the ground glass obicies th a t had been seen in the beginning had changed...CT result was Lung Cancer..and to this day..I think if i wouldn't h ave requested that scan..the cancer may have been worse.. was diagnosed stage 2A..surgery and chemo..I lost confidence in that Pulmonary Dr. And never went back....So always be involved in your heathcare...Drs can be wrong.....

t time...

Posted by @merilee, 33 minutes ago
I have a question if anyone can answer this for me..three years ago..diagnosed with MAC..Pulmonary Dr thought it was cancer when he looked at chest Xray...but did bronchial biopsy and continued to be negative. ...Dr put me on antibiotics for one year i took them...He did blood work and sputum tests off and on during that time..The last time ..I suggested a CT to see if any of the ground glass obicies that had been seen in the beginning had changed...CT result was Lung Cancer..and to this day..I think if i wouldn't have requested that scan..the cancer may have been worse.. was diagnosed stage 2A..surgery and chemo..I lost confidence in that Pulmonary Dr. And never went back....So always be involved in your heath care...Drs can be wrong..... sometimes...

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@merilee, I have moved you to the main MAC and Bronchiectasis Forum page because I think you will get more responses there .. hope you don't mind. I am so sorry this happened to you .. and so glad you were wise enough to demand that CT scan to receive proper care. How are you doing now? What a difficult journey for you!

We have other members who have mentioned "ground glass" in their posts .. I hope they jump in. If you read the past pages of this Forum you will see that we ALWAYS discuss being your own BEST advocate .. understanding your disease .. knowledge is power. Sounds like that is just what you did .. good for you! Hugs to you! Katherine

Ground glass ! Yes, that's me too when I first was diagnosed with MAC a year and a half ago. Unlike you, I have had scheduled periodic CT scans because I am a high risk for lung cancer due to considerable family history and because of how my lung involvement is presenting. My next scan is Tuesday. I am glad you were proactive so you were diagnosed at stage 2A and not later. God bless you real good. Irene

@irene5, Irene, you are a sweetie for jumping in to help @merilee, .. I KNEW I remembered that term "ground glass" .. just couldn't remember who! That is what is wonderful about our community .. each stepping in to help each other .. supporting each other .. again .. thank you! Let us know how YOUR scan goes .. otherwise how else are you doing? Keep us posted! Hugs to you! Katherine

Hello everybody. I have not posted in a while, so I am just checking in. I will be missing in action for the next month as I will have a steady stream of visitors until mid April. I am still doing exceptionally well. Still active and making lots of jewelry. Still on my alternating antibiotics of Cipro & Tobramycin. Just working at staying healthy. Go back to the Mayo June 20. I hope that each and every one of you are doing well also. I read the posts and it seems like you all are on top of things. Hugs! - Terri M.

I had ground glass on my first Ct but it resolved 6 months later. Cts take awhile to clear up. Maybe ne was alarming but now looks pretty good.
Kay S

Thank you. I will. As an aside Katherine, prior to MAC, I was my cousin's caregiver. He had CLL. It was very hard, and I was not sick then. I can only imagine the struggles you and your husband share with his CLL and your lung disease. I am glad you are both back to your home, and that he is doing better daily. Irene