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Is there any successful story?
MAC & Bronchiectasis | Last Active: Feb 10 7:45pm | Replies (111)Comment receiving replies
You are such a wonderful new addition to our group - which I always say is "full of wonderful people who would rather not be here."
When you say, "I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time)"...I hear you...In the ideal world, researchers and doctors would have all the time and money they need to devote to studying illness and disease, but we all know that doesn't happen. The real problem with the research and study of rare diseases is that dollars are scarce. Compared to Asthma & COPD, Bronchiectasis is a rare disease, and NTM/MAC is far more rare, even though it may not seem like it to us. A choice must be made in most cases between developing new knowledge and treatments and following known patients over time (in our very mobile society.)
And this analysis is right on point: "This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient." In fact, if I had not become a mentor on Connect and in this group, after I lived with my infections and Bronchiectasis, I might well be one of those who only checked in occasionally.
So you will see me say, day after day, in many of our discussions, that every person has a different experience with MAC & Bronchiectasis, different underlying conditions, and a different tolerance for risk in their lives.
Frequently I remind people in other groups, like Joint Replacement or Osteoporosis of the same thing - only (some of) those with problems come looking here for solutions. Even fewer actually post here - maybe one out of 10 members who are reading our discussion actually comment.
I try to remember to respect that aspect in our members, and try to never say "you must", or "never" or "always" and rarely say "you should"...
All that said, I feel like a success story, MAC & Pseudomonas free for over 5 years, with stable Bronchiectasis, and finally controlled Asthma - but knowing that can change at any time. I am forever grateful for all I have learned here, and for all those who have supported me, not just in this group, but the several others where I spend time.
My Dad was always fond of saying "There but for the grace of God go I" and never passed on the opportunity to help, support or cheer up someone else - family, friend or stranger - it is what the other volunteer Mentors and I try to do here each day.
Replies to "You are such a wonderful new addition to our group - which I always say is..."
@sueinmn thank you for your kind words. You are a huge success story in many ways. I didn’t realize that you have been MAC free as long as 5 years, and pseudomonas free for 5 years as well, that must be such a great feeling. I know you had some challenges on the antibiotics early on and you make a great example of how there is not one way to get to a healthy place. Just as important, you have such a wonderful attitude towards all of the complexity and challenges faced on this journey and your sharing that with all of us is so incredibly helpful. Like others who have posted, at diagnosis I too was really knocked off my feet by the low “cure” rates, the length of treatment, the serious potential (and sometimes commons) side effects from the drug protocols. It’s a lot. But this group has been a Godsend in that regard and you are a big part of that. Your feedback is always so knowledgeable, compassionate and wise. And to see you and so many others in this group living a full quality life, many in the midst of treatment, has been enormously helpful. It gives me hope in my future, and the strength to be my best advocate. I cannot possibly thank you and everyone else in this group enough. ❤️
To bayarea58 and Sue-
Somehow I missed some of the comments above. Great deep thinking and questioning by bayarea58. So glad you, bayarea58, will have an opportunity to go to NJH and pile on the questions while there. 😏 Look forward to hearing from you, bayara58, on Mayo after the NJH visit.
I would imagine there are multitude of reasons why we don't hear regularly from those who have had BE/MAC. It appears it is quite a while for some in having posted from their last post but so glad that every once in a while I see a post from someone that appears to be person that had not posted in a while. That's great.
Now for your dad's saying Sue. "There go but for the grace of God go I". Thank you for mentioning that. How could I not have heard those words in my head again and again before hearing you post them. My Mom often, and regularly, said them! How we wish they were still with us, in good health!!!
Hope you are doing well and excitedly, little by little, getting ready for your trip overseas.
Barbara
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@sueinmn, Your great efforts and hard work are paid off - we all feel happy for you - I see you help everyone in this forum and also did extensive research on everything related to NTM. That is very powerful. While everyone benefits from your answer and learns from each other, there is something we cant do as excellent as you did. Some are working full time and do not have much time for research, some are older senior without much energy. Some of us may not have the same capacity but we are learning from you and growing together!! I also find that there are so much things we have to find out for ourselves based on individual case. Knowledge and research, great medical care, daily maintenance, AWC, balanced diet & exercise, support from employer and family - it is a huge amount of efforts and a combination of everything. That is why NTM is rarely cured and it may be under control if we do everything right. It is such a complicated and tricky disease with dangerous drug side effects, and long term complications. We have to take it serious!