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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
I hope you can hang in there - while your infection is in a different site than most of ours on this forum, I think I can safely say we all felt similar fear and fatigue like you. It does get better!
As for the medications and side effects, each of us reacts differently. Please keep your ID doc fully informed so they can try different meds. Did you have baseline eye and hearing exams when you started the meds?
If you and your ID doc can find a regiment that works for you, your body will gradually accommodate to it. Your medical appointments will be less frequent once the meds are managed & surgical site is healed, and you will find what works for you. Most people come up with a regimen to manage the side effects, and a pace in life that acknowledges the fatigue (which is partly infection, partly medication.)
I don't know the long-term prognosis for disseminated M. Chimaera because it has so recently become a known issue, but those of us with NTM/MAC in our lungs usually manage to beat it back to a manageable level, where we go off the antibiotics, and may need short-term treatment for exacerbations.
I was treated for just under 2 years, and now have been in management (airway clearance, nebulizers, steroids & antibiotics occasionally) for 27 months. At 70, and with a list of other health issues, I manage to travel, volunteer, play with friends and grandkids most of the time. If I get fatigued, I take a nap or declare a couple day time out to recuperate. I also hire out work I would once have done myself to preserve my energy for what I choose to do, and ask for help more often.
Probably the most important thing is to have something non-medical to do each day, even for a short time. What activity would you most like to get back to? Can you think of a way to do it, at least a little? (Running a marathon is probably not on the list.)
Sue
Replies to "I hope you can hang in there - while your infection is in a different site..."
It has been suggested that I post my comments on the M. Chimaera group post. I seem to be having difficulty accomplishing that. I think I posted on the MAC/Bronch group site again. Any suggestions to point me in the right direction?
I took the big 3 for several weeks and after having a bad reaction, I stopped the treatment. I am asymptomatic and have started gaining back the weight I lost. My doctor suggested that I be under observation until I start having problems. Did you have the same experience?
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Thank you, Sue, for your informative and upbeat reply. No, running a marathon is not on my list; however, swim aerobics and swim gentle joints class are at the top of my list. I have missed these classes dearly. I liked the way you explained that once the meds are managed and I heal from the surgeries, I may be able to find a routine that works for me that can include something besides hospital, doctor or infusion clinic visits. My ID doc has explained to me that treatment will probably be 18 to 24 months, or longer. At 74 years of age, looking at 2 years of treatment, that drags me down, is exhausting. I did have baseline hearing and eye tests. I had a follow-up hearing test last Friday and discovered that hearing in my right ear has diminished considerably. I had mentioned to my ID Doc that after the first week of the Big 3 meds I had lost some hearing. She then added Amikacin and after 4 infusions of that drug, along with the Big 3, not only did my hearing get worse, but my liver enzymes went off the charts. I am currently taking only Ethamathrol and Clofaximine. The Doc plans to add Azithromyicin tomorrow; however, after the hearing test, I'm not sure what will happen. I am rather confused about the Clofaximine drug. I have been taking it 17 days and other than colored urine, and dry skin (itching) I have shown no other side effects. The info papers on this med indicate that 75 to 100% of patients who take this med experience skin color change. It may be too early for this to happen. I am very anxious about this reaction. As for having something to do each day that I enjoy, in addition to swim activities, which I hope to be able to begin again in the next few weeks, I have decided I want to draw. I've set up the space; have my pencils and chalk ready; a friend gave me an easel; sketch pads are aplenty. Now all I have to do is Start. Again, thank you for reaching out to me. I feel better all ready:)