NTM-A — YOU CAN DO THIS!

@tomed Wow, what a great post! So happy for your husband and his outcome. As someone who has been in the trenches myself this past year treating MAC, I really appreciate the “village” and perseverance these journeys take. Well done!

@tomed You and your husband have certainly been through the trenches, persevered and have finally got results. Thank you for sharing your good news! Prayers for continued health!!

Glad to hear your story and the team that Univ. of Penn makes available. I believe Scoop also goes to Penn and from all she has written they are doing right by their BE patients.
I say glad to know this because I may find myself back in that neck of the woods in a few years and it would either be NYC or Penn for my care. Penn would be easier to travel to from the Jersey shore than the trip into NYC...I would think.
Congratulations not only to your husband but to his dedicated side kick in the journey.
Barbara

@blm1007blm1007 if you’re headed this way, its good to make an appointment early. It takes a while to get appointments at Penn, especially if you’re not already established in their system. Dr. Palacio and Dr. Watts are excellent.

Thank you for sharing your wonderful outcome but what a journey! I have so far untreated Absessus because my Drs. Think the treatment would be worse than not at this point. Thankfully my last cultures were better for Absessus although MAC is back and being watched. Im currently taking Brinsupri and my Dr. has another patient who has been on it for a while with good results though also with untreated Absessus.
What steps do you take to avoid reinfection? Thanks if you can comment on this.

@ingrid1947 we’ve done several things. Some may help and others may just be our own paranoia … 1) Ed continued the treatments for a full year after the doctors did not see any infection in the CT or culture. 2) no gardening (I take care of the yard, Ed does not). 3) I vacuum and dust the house every 2 weeks, use a home carpet cleaner monthly and professionally clean the carpets 2x/yr. 4) we had the ducts for the HVAC processionally cleaned and we change the filter monthly. 5) no hot tub or swimming. 6) Ed masks when we were in venues with lots of people. 7) when the weather permits, we open doors and windows for ventilation. 8) use filtered water for drinking and cooking. And 9) clean the shower every 2 weeks and soak the shower heads in a Listerine solution every couple months.

This is totally overkill with a bunch of paranoia mixed in, but we don’t ever want to go through the NTM Abscesses treatments again.

The key, however, was getting rid of the infection with 100% compliance. If there were any side effects of the treatments, Ed contacted his doctor immediately for guidance.

Thank you. This all seems not like overkill to me and reenforces what I do. I think Drs hesitate to tell you to do things without research backing, and also because most people won't do them and might be turned off to doing the basics if it all seems too much. It is a lot trying to avoid what is everywhere! I don't take showers and leave the door open (and window when not too hot) when I run a bath to avoid steam. I wear an n95 mask when I wash dishes or dust/clean/work outside. Of course sterilize nebulizer parts. Things you do and maybe some others. My Dr was ready to treat the Abscessus, talking about a feeding tube, and other horrible sounding measures if I were to lose more weight from the horrible treatment. I began doing much more to avoid any aerosolized water (such as above) and my next cultures were greatly improved. He had no explanation, so I wonder if what I did was the cause. I had been taking steamy baths before I read online that Abscessus was in steam, and running a space heater which gathered dust I realized.

How wonderful that Ed is rid of that plague!! Oddly I had abcessus 4 or so years ago, and had to stop treatment after 6 months due to side effects. At that time I was going to a pulmonary dr who didn’t know much about all of this, so I never had sputum tests or anything. I never knew whether I still had it all these yrs til I went to NJH, and after a bronchcoscopy and several sputum tests it appears it has cleared! (Or is at a really low and undetectable level). I will say that what I’ve learned from this forum is the reason I’m doing so much better in general. I still have pseudomonas tho (the first pulmo knew about it but didn’t treat it ugh).!Now I go to NJH and they’re ON it. In between NJH visits I see Dr Despotes at UNC Chapel Hill’s center of excellence. Good Information is just SO IMPORTANT with all of this!!

@sarahlynn1960 Yes it is! This forum and good doctors have been amazingly helpful in this crazy journey. So glad to hear that you’ve cleared the infection as well - now it’s just monitoring. Best to you!!!