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A big thank you to Linda and Terry!
Terry and Lindam -thanks to both of you for all the information about the MAC webinar – the charts were helpful and interesting. It is interesting that there is no evidence that the bacteria lays dormant but that is what most of us have been told. I took the Big 3 for a year and thought I still had it but a bronchoscopy showed I did not but did have another bacteria. After several people talked about the horrible sweating, I really remembered that and then realized it had stopped. Whenever we have a weak immune system from an exacerbation and/or a lot of prednisone, we are much more prone to get other things. I was first diagnosed with asthma almost 25 years ago and have taken advair 50/500 for many years after other inhalers. One doctor thought It was always COPD and not asthma. My current pulmonary doctor said it is bronchiectasis and that I have probably had it for many years. My lung capacity is in the low 40’s. I was coughing up crude and coughing all day until I started the 7% saline about a year ago. I have tried other inhalers that have not helped and was on 5 mg. of prednisone daily for a few months which did not seem to help either so I stopped. My doctor had also suggested a low dose of daily antibiotic which I said I did not want to do. The antibiotics just kill the good bacteria in your gut and mess you up. I have taken probiotics for many years which I believe help me. I get short of breath easily and have been on two liters of oxygen at night and when I exercise for two years now. I am having a knee replaced next week. It was supposed to have been done four years ago when I first got MAC and was on the Big 3 so my orthopedic doctor would not do the surgery. Since using the 7& saline I have been better and my pulmonary doctor and heart doctor (a-fib) said I could have the surgery. I just pray my lungs do okay. Well I’ve gone on long enough for now.
Thanks Bunches Terry – Very Interesting – I will not share with others til you get the hard copy.
Jen – hope your results turn out for the best. I do not want to go through that – not for 24 hrs.
Jen – Thanks for your feedback. It is just very frustrating at times. When I tried the CPAP I used it for about 5 weeks and sometimes felt worse in the morning than before I used it. I have just mild sleep apnea. I have been through pulmonary rehab which helped some and I exercise every day – but not enough aerobic I believe. Yes, all the doctors have their biases. Most local pulmonary doctors do not know much about bronchiectasis. I had the breathing tests done recently after two years and my lung capacity is about the same. At least it has not gotten worse. I do continually cough up a lot of mucous when I use the 7% solution. If I don’t use it I am coughing all day and people think I am contagious – so that is better. I sure have learned we have to be our own advocate. I remember is my 20’s my primary doctor doing the basic breathing test and I did terrible then. I wonder if I have never had full capacity in my lungs since birth. I have read that when first born those first yells of breathe are what starts the lungs working and if not strong then they may never be. My pulmonary doctor says that is possible – but I will never know. He believes I have had bronchiectasis for along time. I have been diagnosed with asthma about 25 years ago and have had many, many flare-ups over the years which have probably all slowly damaged my lungs.Thanks.
Yes, I am hearing lately (I think on Inspire) that they are not treating with the Big 3 as much because it can come back easily. I was told because my immune system was so weak – that could have been why I got the MAC. Most people do have MAC in their lungs but if you have a weak immune system, it is easier for it to flare up. And once it is in your body (from air, soil or water) you will always have it but may not always be actively affecting you.
jen aunt nanny – tdrell — So much being talked about MAC, Bronchiectasis and GERD – Hearing one thing from Mayo and something else from NJH – it all gets very confusing to me – who and what do you believe?? I have been treated for asthma for almost 25 years and was treated for GERD early on because I could not get asthma under control Then a few years ago I got MAC and was taking the Big 3 for a year. After the Big 3 I still seemed to be still coughing up a Iot of mucous and thought I still had MAC but had sputum culture done and later bronchoscopy and did not have MAC then had breathing tests and was told I had bronchiectasis and probably had had it for a long time. My lungs are at about 45% of capacity. I chose to stop taking the GERD med as it can affect your liver. My primary doctor said it was okay. I told my pulmonary doctor I stopped and he just said if I start coughing more I should go back on the GERD med. So far I have not had my coughing get worse. The thing that has helped me the most is the 7% saline solution in my nebulizer along with the albuterol. I have been on Advair 50/500 for many years starting with the asthma. Recently I have tried samples of spiriva – and a few others along with Advair and it did not make my cough any better. The 7% saline solution has helped the most to get the crude up and out so I do not cough all day. I have used the CPAP for awhile too and it did not help either so stopped that too. I am tired most of the time and get winded easily. I did not do well on the 6 minute walk and most oxygen level was getting below 88. I am not on oxygen at night, when I exercise and when I need it. I am 71 years old and have no desire to go through all the tests you folks have had at Mayo and NJH. If I were younger and still raising young children it might be different. One pulmonary doctor I had many years ago thought I had COPD and never really had asthma. I don’t know what to believe any more. I never smoked but inhaled a lot of second hand smoke when I was younger and working. I have learned a lot from the Mayo thread and Inspire and I thank you all for sharing. At first I thought I was alone with the MAC (had really bad night sweats with it) and the Bronchiectasis. It is nice to have a support system. People look at me and think I am fine, especially since I don’t cough all day — just after I use my nebulizer. Thanks for listening (reading)!