Connect
← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
Discussion
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Katherine,
I'm not sure how this works so I hope this will get to you. I have read many of the posts here and I am so incredibly blessed compared to pretty much all of you. I'm 60 yrs old. I was just diagnosed with mild bronchiectasis. But, I think I've had it for many years. They found it because I had chest pain so they did an xray - that looked a little off so they said might want to follow up with a ct scan in 6 weeks. The chest pain went away so my Dr. said I didn't really have to have the CT scan, but since I was a former smoker (25 years ago) I'm always a little nervous so I said do it. That's when they diagnosed me with mild bronchiectasis in two lobes of my lungs and MAC/MAI infection. I have no symptoms other than sometimes dry/sometimes mucousy cough that I've had for many years. Some mild fatigue occasionally and a little trouble keeping weight on although that may be due to some depression due to my husbands death a few years ago. So, I'm really doing great all things considered. My pulmonary Dr. who is a fellow (not crazy about that) and her attending at Duke are recommending a followup CTscan at 6 months to make sure the infection hasn't progressed as that could make my bronchiectasis worse among other things. I've opted to have a bronchoscopy to get a culture even though they say they know it's MAC and the culture could always come back negative from getting a bad sample. They've advised against starting treatment until I need to - until or if I start having issues since the treatment can be so awful. That makes sense to me. I guess I'm wondering if you think that sounds reasonable also? I know you're not a Dr. but I'm a great researcher and there's no information out there on how to treat patients that look and feel pretty darn healthy. I just want to be proactive. If I were to suddenly get worse, I think I would go up to the Mayo to get a second opinion and see your Dr. I'm actually a MN girl - my whole family is up there so it would just be a trip home to me! Everything I'm getting on the internet stresses the need for exercise, eating right, rest. My Dr's didn't even bring that up. Also, I read-on here I think- that some people never have issues with this? Wasn't there a 90 yr old woman living with MAC for 20 years? I don't know how many people out there are like that. Thanks, Katherine. You are an Angel for supporting everyone in this. You've definitely earned your wings! š
Replies to "Katherine, I'm not sure how this works so I hope this will get to you. I..."
Connect
Hello Janet, I can only speak for myself .. but if I was you .. I would get my little fanny to Dr. Timothy Aksamit at Mayo Clinic for a second opinion just as fast as an airplane could carry me!! (and as soon you can get an appointment which does take time so call right away! 507-284-4348 .. not sure if I am supposed to be giving that out!) It could be a nice trip home to see family in MN and at the same time gain peace of mind.
Hereās why from my perspective. I was told for a LONG time the only thing wrong with me was that I had āasthmaā! Meanwhile the MAI/MAC was developing ācoloniesā because I did not take action! At that time I also not feel āsickā. In fact if you have read through the threads you know I delayed antibiotic treatment because I really did not have proper information. Due to my fear I waited until I had a SECOND mycobacterium! I really did not feel unwell until I got the second serious abscesses mycobacterium. Right or wrong .. I always kind of blamed myself that if Iād gone on the antibiotics initially I might never have gotten the second serious mycobacterium .. that Iād really weaken my lungs. Who knows but I wish Iād been more proactive. But at that time this Forum didnāt exist .. I was all on my own .. it felt pretty lonely!
Why a second opinion from Dr. Aksamit. Because after seeing him you will KNOW if you need to go on antibiotics .. OR if you can delay treatment. You can trust you are doing the right thing.
After going to him for quite a few years in various states of my three lung diseases I have observed his diagnosis process. It is NOT a simple one. MAI/MAC CANNOT be cured .. it can only be āstabilizedā. Once it gets in our lungs .. and NO ONE yet knows just how mycobacterium gets in our lungs .. you canāt get rid of it .. only stabilize it. That is why determining treatment is like putting together a BIG PUZZLE PIECE! Iāve watched him. He asks me questions .. looks at my current and past testing either of Xray .. MRIās , sputum culture tests, breathing test .. on and on and on. He puts that all together and then decides IF/WHEN I need/donāt need antibiotics.
To me this man walks on water .. I would trust him with my life. He speaks all over the nation and world on MAI/MAC .. that is one of the reasons it is hard to get in to him. Last time I saw him I told him āhe needed to remember the patients who loved him before he got famous!ā He just laughed! He is just a doll! Personally that is why it scares me when I know some of our people on the Forum are forced to go to doctors who are not specialists in MAI/MAC .. who do not specialize in this. One person on our Forum told me her doctor only had one other patient with MAI/MAC.
SO, Janet .. this is just me .. I would sleep better at night if I got a good second opinion that said .. Nope you donāt need antibiotics yet .. OR .. We need to get you on antibiotics PRONTO .. AND then tell me WHICH antibiotics are the ones that are BEST for me! So Janet, Iām sending you a Big Hug on the GORGEOUS Minnesota day .. it has been a glorious one!