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Sat, Jun 8 2:13pm · Diagnosed with MAC but not being treated in MAC & Bronchiectasis

I had Kansasii and Abscessus back in March, 2005. I had part right lung removed because of cavities that were made from Kansasii. I didn't go on meds until October 2007, becasue my doctors had no idea what to do. This was in a huge teaching hospital too. I went to National Jewish in Denver, they have or did have a Day Program for 2 weeks. I was started on emipenem and amikacin IV, which I learned to do at home. Did IVs for 9 months 3 times week. Also on oral, ethambutol, rafampin, avalox for 18 months. In June 2008 I was cured. In 2014, I was told i had MAC….So tar, I have been ok …fingers crossed!!

Thu, Apr 18 4:52pm · Bronchiectasis, MAC and now Pulmonary Hypertension in MAC & Bronchiectasis

irene5, Well I finished them I don't think the last one was very good. I haven't done any of those in 14 years at National Jewish. I am actually sore today. Only had a bronchoscopy once in 2014. Thank you for your prayers.

Wed, Apr 17 7:47pm · Bronchiectasis, MAC and now Pulmonary Hypertension in MAC & Bronchiectasis

Terri,thank you so very much. I amhoping for more testing. I need to know even if I have no symptoms. I appreciate your help.

Tue, Apr 16 9:36pm · Bronchiectasis, MAC and now Pulmonary Hypertension in MAC & Bronchiectasis

Thank you Irene5, When I had Kansasii and Abcsessus, I went back and forth to National Jewish in Denver. The ID doctor I had for all that time was here, I went every week, for 2 years. For reasons in family, he moved to North Carolina. He has returned, and is now my Primary doctor. Long story on his part, but he has kept his ID license and I see him every 3 months. He is amazingly thourough, and I trust him with my life. He says not to treat. I am doing ok. Now I have this pulmonary hypertension, that is a worry. I am having so much trouble doing the 3 sputum, third tomorrow. I'm sure it is still lurking there. My new worry is the hypertension.

Mon, Apr 15 6:48pm · Bronchiectasis, MAC and now Pulmonary Hypertension in MAC & Bronchiectasis

Terri, I appreciate anything you can tell me. I can't imagine 2 doctors just saying you're ok, if I'm not. I started my cultures today to see how MAC is fairing. I have known I have had it since 2012, but no official word until 2014…I just don't want to think I might have to find another pulmonary doctor. Had the same since 2005, but in 2016 I was only given a NP. She couldn't discuss my ct scan, she didn't know how too, so I left. This new doctor thought my MAC was gone. Hense the cultures. I understand that if you are doing fine, not to treat. One doctor told me MAC is slow growing, like moss on a tree. If it doesn't hurt the tree, we leave it alone. I am upset. I thought he would at least read my reports after 2 years. I see him every 3 months. I see I'm rambling, sorry. I'm hoping the H.P. is only affecting my valve. Thank you for you help. I really appreciate it,

Sun, Apr 14 12:41pm · Bronchiectasis, MAC and now Pulmonary Hypertension in MAC & Bronchiectasis

Terri, thank you for answering! I am not on any meds for any of my lung ailments. The Pulmonologist said P.H it's mild, and done with an Echo, so there are better testing we have. Echos are ok but aren't reliable for checking arterial pressure. Have you had a different test for P.H.? I have no symptoms, Not short of breath, I can walk, do housework, within reason for age and arthritis. I am being checked again this week for MAC…I have only had one scope back in 2014 that grew MAC….I have lost 11 or so pounds, but lost my son, and I am having such a hard time, even 2 years later. I do get antibiotics, but only when I bleed. Cardiologist does not want to see me again, said my heart is just fine. I don't know what to think. I am worried, and lung doctor didn't seem to think it's a big deal at all…
' I am happy you are negative for MAC. Those meds can be brutal. Was on 2 IVs every other day for 9 months and 3 oral for 18 month…Now I have another, plus Bronchiectasis, and H.P.. I needed so badly to hear from someone with H.P.. Thank you so very much.

Fri, Apr 12 4:38pm · Bronchiectasis, MAC and now Pulmonary Hypertension in MAC & Bronchiectasis

I was cured of M Kansasii and Abcessus, in 2008, after an 18 month drug regiment. I have had Bronch for years. I bleed occasionally, but only heavy twice. I have had broncoscopy in 2014, and test positive for MAC, from National Jewish in Denver. I am not on any meds, have done very well. Doctor said, if it isn’t causing symptoms, leave it alone. I have had antiphylactic shock from Clarithromycin, so I can not take any in that class of drug.Tons of us are out there with some of those bacteria and never know it. That’s what doctor has said. I got a new dr. and he said the same thing. Anyway, I just had echocardiagram and was told I have mild pulmonary hypertension. I will be having sputum cultures again, before any meds are started for PH…I’m terrified. I can breathe, walk , do housework, watch my grandson all day, etc….I just wonder if anyone here has Pulmonary Hypertension too, along with these other diseases…Thanks for your help. This has really got me so upset.

Apr 4, 2018 · Treatment?? in MAC & Bronchiectasis

Thank you for your kind words Gina. Life is not the same, never will be, but i have 2 other children, although grown, they need me. I have a grandson and he is the reason I get up everyday. Thanks too, for your answer regarding lungs . Some days I honestly don't remember I have MAC, or bronchiectasis. I do have an aerobika aslo, but I have an easier time clearing my lungs just by laying on my back. I get so much out that way, then I am finished until the next day. I sit, and worry all day, and my mind went to my lungs. I know, I had surgery immediately when they found Kansasii…I was very sick. But, I don't feel like that at all, and I am happy I don't, but wondered too if I just had a rotten doctor. I had him 14 years, and he has done nothing, but say go home and live your life. So, as I am also allergic to th the one class of drugs that work on MAC, I worry about that too. I am seeing someone for my emotional health. Not doing very well, and it has started taking toll on health. I appreciate your answering. Thank you, Cathln.