Help! Positive testimonials required
Hi, I’m new in this Group.
I’ve received a Mac diagnosis and Bronchiectasis in these days. I’m still in the phase of “no, it’s not true, it’s not possibile”
I’m 44 and I’m really afraid for the future, especially because I’m the mom of two very small children , 2 years and 6 months. I’m afraid I won’t be able to take care of them for a long time…
I really need to hear from you stories of positive experiences, is there anyone who got definitly cured ?
Do you think I could still have a normal life?
Thanks a lot
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Thanks for your reply.
So far I do not feel I have any bad side effects with having taken the Paxlovid. I drink a lot of water every day and that may have helped with taking it.
I have developed, what I feel is, a mild head cold immediately after having finished the Paxlovid, It may be secondary to Covid, the head cold symptoms. I made Dr. appointment to be checked out as a precautionary measure.
Yes, it is hard to know....I rarely took many of the med's the doctors had suggested in years past and did fine until the BE diagnosis. So with BE ......this time my gut said "take it."
Thanks Sue, I know you are one of many… but you have kept me on the right path of being positive and healthy while dealing with mac and bronchiectasis. Thank you for continuing your very supportive and helpful advice and care. I need reminders every once in a while that this is doable and am not alone.
Cindy
@sueinmn Thank you very much Sue. I need to metabolize this condition. It’s difficult to accept to live in a chronic condition. I don’t even know if I will tolerate the therapy, if it will be efficacious at least in the middle term…there are so many scaring question… my pneumologist have said to me that no one ever really manages to eradicate it… For this reason I wrote, hoping to find that he was wrong…
Hi Mary,
I was diagnosed with bronchiectasis about 15 years ago and with MAC just prior to the pandemic. I am choosing not to take the antibiotics due to fear of the side effects. My pulmonologist and I are taking the "wait and see" approach which has been working out, thus far. I nebulize, use an Aerobika device, do airway clearance and use a compression vest daily. I have incorporated these treatments into my daily routine (about 40 min) and it works well with helping me expel mucus from my lungs. I lead a relatively normal lifestyle. I eat a mostly plant based diet, go to the gym 4 times per week and take water aerobics class in an outdoor pool. Most importantly, I do my best in maintaining a positive attitude. One thing worth mentioning is, in the beginning of my illness, I had a very bad cough and a lot of mucus in my lungs, From this group, I learned about Nebulizing with 7% hypertonic saline which made a huge difference. The saline creates an uncomfortable environment for the MAC bacteria and research shows it slows the growth. Airway clearance helps with getting rid of mucus build up. I cough a lot less now and don't have to worry when being out in public. This is a brief rundown of my experience, which I hope sheds a bit of positive light. Everyone is different however. Just know, it is possible to lead a good life despite these conditions. I have learned so much from this support group . Stay with us! I wish you well.
Have you been nebulizing 7% since 15 years ago or during pandemic? I can't tolerate 7% and even 3% irritates me. I produce so much mucus every day. (2 tablespoons yellow/green ) .
My dr. never mentioned anything about saline and I did not find out about it until I started tuning into this group and read the research. I started with 3%, just to test it out and it was well tolerated. I graduated to 7% around May of 2023 and have been using it ever since. I use it once a day. Thankfully, I have no problem with it. It sounds like you are getting your mucus out which is a good thing.
I don't know what MAC involves, so I can't speak to that. I am dealing with Bronchiectasis and what I would say, so far, is that it is manageable, but somewhat time consuming to deal with. It takes some time to figure out what works for you personally and then, forming a routine of sorts to keep your lungs as cleared out as possible. So, I don't believe that you have to be fearful, but you do have to be vigilant. It is a shame at such a young age and with young children to care for that you have developed these issues. Good that you have found this blog because I think you will find it helpful hearing from others who are dealing with similar issues. Take care of yourself. Look for suggestions and experiment with new approaches.
Thank you for explaining. Do you use Albuteroal or Levalbuterol before saline?
I have had Bronchiectasis most of my life. I never knew it until 2005. The 2 NTMs I had then required surgery. I got no help with both NTMs here, so I went to National Jewish in Denver. They found the bronchiectasis, and also cleared up the two NTMS, after 18 months on meds.
I did fine. I retired, then cared for my grandson everyday while his parents worked. I did that for 3 yrs. I have MAC now, not treated.
I Always aware that I need to take time when I need it. I am now 73. I now have scar tissue in lungs from NTMS. I always do the clearance. I can't use saline. I try to stay active. I still go out, shop, see friends, with a mask! Try to be with my grand kids as much as I can.
I hope you can see that although you can have times when you catch a bug or two, a culture is done, and antibiotics clear them up.
You will get a routine for your clearance. Making sure to take time to rest if you need it. Its hard, I know , with two little ones. This site is the best for learning and asking any questions you have.
Yes, as per my dr recommendation. I take two puffs Albuterol Sulfate prior to nebulizing. And, I administer the med via a Monaghan Zstat Anti-Static Valved Holding Chamber. As per the website: "It has an anti-static valved chamber that ensures consistent medication delivery and does not allow the medication to stick on the sides to prevent medication wastage. " I find it to be pretty good. The below site is where I get mine.
https://www.healthproductsforyou.com/p-monaghan-aerochamber-plus-z-stat-anti-static-valved-holding-chamber-with-flowsignal-whistle.html