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First Name
Janice

State/Province
SD

Country of Residence
United States of America

Health Interests
Lung and airway disorders

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Posts (19)

Dec 17, 2018 · Extreme fatigue in MAC & Bronchiectasis

@windwalker I think I need to quit thinking along the lines of 38 and remember I'm 78. I used to clean my whole house in a morning (small house) and now I can't do it in a week. I'm still frustrated because my doctor doesn't think I should be this tired with as few areas in my lungs. This week should be the heart valve test. We haven't worked our way to my legs yet??? Maybe it's my legs refusing to move. I know it's not funny but if I don't laugh I cry.

Dec 15, 2018 · Extreme fatigue in MAC & Bronchiectasis

@terri M, You might be right about the food we eat. Way too many additives. I've just never had to contend with this kind of fatigue. When I'm sitting quilting or just relaxing I feel fine and think I can get up and do anything I want. Then once I do get up, I can only clean or cook for about 15 minutes until I'm totally wiped out. If nothing shows up on the tests, what in the world do you do? I have very bad body pain and I'm assuming that is just Fibromyalgia which I've had for years but I've never had the total fatigue. It's good to have someone to connect with. Thanks, Jan

Dec 15, 2018 · Extreme fatigue in MAC & Bronchiectasis

@terri M. I had a day yesterday with my pulmonologist, the nurse called on Thursday to say my sputum which I was never able to get a good specimen, was negative. I told her the fatigue has increased way more than ever before. She talked with the doctor, he said he wanted to see me the next day. He said my bronchiectasis does not appear to be bad enough to cause the fatigue I have. He looked back at old scans, back in 2015 and didn't see any difference in that time. He had the nurse take me walking and checked my oxygen, it dropped to 86 in just a few minutes, he put on oxygen and I walked more, oxygen slow coming back up. Sent me to the hospital for a chest ultra sound thinking it might be blood clot……it wasn't. Now he is going to do a heart valve echo next week. I suggested maybe I should lose some weight and get some exercise, he said that would probably help. Evidently I've had the bronchiectasis for a few years and he was most likely it will not progress anymore. I think he is leaning more toward heart valves instead of the bronchiectasis. I'm really lost since I'm new to the disease/condition. It must have been present in 2015 but no one ever mentioned it. So that's where I am, waiting for the heart scan/with bubbles?????? I still have no more energy. Thanks for listening. Janice

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

@extratiredalway, Noooooo, I don't want to hear that about potting soil. That's my favorite thing to do, repot house plants and flowers in the summer. I'm still counting on mine not being that bad since the pulmonologist said I didn't have a lot of the bronchiectasis spots, but if that's the case why am I so very tired? Is it the suggestion after reading about what this really amounts to? Janice

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

Does this disease actually recede? I thought once the thingies?? were there they were with you for life. I guess I need to read more about this stuff. I don't even know what the MAC is, is that when the already vestals are compromised and become infected? OK I will go do some reading and try to figure out all of this.

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

@terri M, thanks for the information. I'm struggling to figure out all of the symptoms and how it's going. This was my first meeting with the pulmonologist, he spent at least 45 minutes with me checking my background etc. He has also ordered a heart valve echo to see if that is OK. It just takes a long time to get all of the tests completed. I'm trying to get some exercise in thinking the fatigue might be that I'm out of shape. It's very hard to do much walking when just plain old house work wears me out, even just getting showered and dress has me puffing. The doctor showed me my lung scan and said the number of bronchiectasis things, whatever they are, was not bad so I'm wondering if there is enough there to make me this fatigued. He had me take a 10 day series of Prednisone and an antibiotic which I've taken and been done with for a couple of weeks now. My PA had me use an inhaler which seemed to help sometimes but didn't make a big difference. I'm leaning toward just being fat and lazy, and out of shape. Although I do know there is something in my lungs, I just don't know how much it's contributing to my fatigue. Thanks for your help, I'm reading as many posts as I can to try to understand what is going on with me. Janice

Dec 8, 2018 · Extreme fatigue in MAC & Bronchiectasis

My PA is great about running blood tests, I can't remember all that I've had recently but I will check MY Chart where they are all listed. I will be going in to see her again very soon. I can't handle the body pain much longer. I will remember to ask her about the blood tests. I think the body pain is fibromyalgia which I've had for a long time. It comes with the weather changes plus I just had surgery on one of my eyes last week, the stress causes fibro pain too. I just want to find what is making me tired. Thanks for your interest

Dec 8, 2018 · Extreme fatigue in MAC & Bronchiectasis

Thank you Terri, yes my CT Scan was recent, and the first I knew of this disease. My PA sent me to the pulmonologist for evaluation. He put me on a 10 day prednisone/antibiotic series. He also ordered a heart echo to check the valves in my heart. It just takes so long for each place to get to the testing. I don't have the echo until the 20th of this month. I assume he wants to check all things that might be causing the fatigue. I was impressed with the pulmonologist, he spent at least 45 minutes with me going over my chart and asking me questions. I guess that's why I forgot to ask if he thought this was progressive or will I stop here. The fatigue is what is my main problem right now. Once I have the echo, I may ask for another appointment with the pulmonologist. I think I need more answers. I have had fibromyalgia for years so this might be causing some issues right now.
I'm not sure I know how to maneuver the website well enough, but I will be spending more time figuring this out. thanks for your message. Janice