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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
Thank you for inviting me in! Open heart surgery 28 months ago went fine. On last Cat Scan a cyst was found on the sternum bone. Upon removal a sternal wire was removed that was covered in fungus. After 6 or 7 weeks this culture grew to be M. Chimaera and my life changed. I was told a machine used in the operating room was contaminated and caused the infected mist that applied itself to my open wound. It is a very slow growing infection so appearing at this late stage does not seem out of character for this infection. I was immediately referred to ID and was told the rigorous treatment that is involved for getting rid of this infection. I was given no alternative, it was take the treatment or suffer through the wrath of the infection which does not have a high survival rate. Within two days I was taking Ethambutol, Rifabutin and Azithromiycin (6 total, orally, each day) and 10 days later the drug Amikacin taken by infusion, three times a week. Right away I noticed diminished hearing; fatigue; balance issues and when a blood draw was taken, my liver enzymes were 800+ and 600+. We stopped everything for a few days and now have started adding back in each drug, one at a time. In the meantime I started taking 100 MG of Clofaximine. I am currenting taking that med along with Ethambutl (3 tabs) every day. My hearing is getting worse and I am noticing eye changes. My skin is extremely dry and itchy. Fortunately, I have not experienced any stomach issues nor skin color changes. While taking all of these meds I have had to have an operation to remove the infection that was found around my sternum incision (this was located via a PET Scan). A golf ball sized area was removed and the cavity was filled in by some stomach fat that was transferred to the open cavity. That all seems to be healing fine. I feel like a ping pong ball in that I am going somewhere, hospital related, almost every day. The fatigue and rigid appt. schedule keep me tethered to the house or a medical facility. Until this forum, I have never heard of anyone having to experience this before. Is this something that can be cured or will I be "treating" this situation as long as I live? I have always considered myself "a fighter"; in this case I'm not sure what is realistic to fight for. Give me some hope, please.
Replies to "Thank you for inviting me in! Open heart surgery 28 months ago went fine. On last..."
smileygirl47....l recall reading about the incidence of people who had had open heart being afflicted months after with NTM infections that were traced to the fans on the equipment used during the surgery...if l recall they were made in Europe...l will google to check...ok..just googled..found article from Mayo CLinic Laboratories written by Nancy Wengenack Ph.d from feb 19, 2018 called "An Update on Mycobacterium chimaera and Cardiac Surgery Infections" terri drell
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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