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Negative sputum results without treatment
Has anyone had spontaneous sputum conversion without taking the big 3? I was told recently that my latest samples produced no pathogens -- i.e. MAC organisms. That is great news of course -- I had no idea that would happen but found some studies that 40- 60% can spontaneously convert without the benefit of treatment. I was diagnosed about 8 years ago and just assumed I would always have it. I have had no symptoms other than a flare up recently when I caught a cold, hence the sputum samples to figure out what was going on. I was given a long explanation by my pulmonologist which was a little difficult to follow. Would love to hear from others if they know anything about this.
Mary
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@pfists Thank you posting this Shari. This does sound promising, lets pray it works!
@sayaboleh Hi Mary. That is great that you are going to the NTM conference this year. Another member, @deborahwolf, is also going to be there. You two should try to meet up while you are there. I hope you gals come back with some new info and update us on what might be coming down the pipeline.
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1 Reaction@marilyns AMEN!
Waiting and hoping some one will post info on the conference Friday,
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1 ReactionMy CT scan show multi areas of bronchiectasis with many nodules. They are doing sensitivity test to determine what med to give to me. I didn't have much symptoms until recent pneumonia. Now I hear wheezing sound when I breath and I am just so tired making it difficult for me to work 5 days. Reduced the work days to 4 days a week. Wondering if it would be better to take early retirement at 62 to focus on my health.
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1 Reaction@poppins Hi. We have two members that I know of that are at the conference. They said they would check back with us and share what they learned.
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1 Reaction@mingsin Hi there, and welcome to our group. Is this your first diagnosis or experience with lung issues? How are you feeling? (I know tired, anything else?)
@mingsin To try and answer your question about continuing to work....that would depend on how you feel and can you afford to? Also, would it be better to mentally be work focused, for some, it is. I went on disability when I was in my late 40's. For me, working while being severely fatigued just made me sicker and sicker. My husband retired at age 57 and began collecting his SS at 62. He could afford to and has investment properties and invests in the stock market. He did the numbers and he found he came out ahead retiring at 62. Not everyone has the financial cushion he has that would make that a beneficial option. You may find at some point that you have no option but to retire and collect your SS. I hope that is not the case for you, but, you should make future plans for that in case that comes to pass. The bottom line is, your body will tell you when enough is enough. When I went on disability it was the best thing I could have done for myself. I am pretty sure I am doing as well as I am now because of it. It freed up time for me to take trips to the Mayo Clinic which greatly improved my health. It eliminated work-related stress. It allowed me to rest more instead of constantly pushing forward when I had no energy. I was fortunate in that I inherited a home that I made a rental and that supplements my SS. If there is any way you can boost your passive income, it would be a good idea. I hope this has helped you in some way. Please keep me posted on what you do.
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@windwalker
Those are really good ideas from Terri.
The only things I could add is
If you just got over pneumonia it can take al quite awhile to get your energy back and maybe you will feel more energy down the road.
Also quite awhile ago I went on Social Security disability because my RA affected me so bad. But I was allowed through SS Disability to continue working at reduced work days I worked 15-20 hours a week at the same place I was working and collected SSDI. Since then I did eventually have to just quit my job because of lung complications.
You would have to see if you qualify for SSDI. There is a lot of paper work and it takes awhile but this may be an option for you depending on you qualifying and and your job allowing even less hours.
Best to you!
Shari
Still fresh from the conference which ended yesterday. It was harder than I thought it would be to find Deborah since I didn’t know what she looked like? Also there was a lot of folks! Dr. Huit pointed that out.. The first meeting she went to in 1994 had only 20. I’ll try and post some initial thoughts. It was quite intense and very technical in part. Overall I don’t think there were any major developments reported except perhaps for some work being done on phages. Apparently the medical world was quite excited about a 15 year old girl in England who had a lot of complications from a double lung transplant and recovered rather miraculously through the use of phages developed specifically for her. This happened a few weeks ago and was the first successful such use to treat NTM. I thought that was the most promising albeit challenging and very early.
A speaker from Toronto mentioned that NTM is a ‘reportable’ disease in Canada and someone in the audience questioned why it isn’t in the US. Does anyone know anything about what that means? I’m not clear about the ramifications. I heard about a research registry; wouldn’t that do the same while maintaining privacy?
Will post more when I get home or at the airport if my flight gets delayed due to the storm blowing through Dallas!
Mary