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Bronchiectasis: New Diagnosis
New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.
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auntnanny, thanks for the information, I just feel so lost not knowing what is going on. It sure does help to read the posts. I'm still in denial and thinking this is just another cold setting in. I hope the tests get scheduled soon so I can move on and find out something. I have tried all summer to build up my strength by trying to work in my garden. It's gotten worse as the summer goes on and now the garden is done. I'm down to using a walking stick to walk outside because I feel so unsteady when I'm walking. Time will tell I guess. Thanks for your information. I know something is wrong I'm just not sure what.
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2 Reactionsjweisser.…… I feel one of the main problems most of us have experienced is that we did not have a doctor who knew any more than we did. I saw 7 specialists locally and none actually knew anything or were able to help in any way. These were allergists, pulmonologists, cardiologists, internal medicine, ENT, …... I kept trying all of it. Finally, out of desperation I made a call to Mayo's -- they took me right away. Diagnosed within 2 hours...… I have medicare and blue cross..... I was never charged a dime for anything. It was a 10-hour drive but ---- the best thing I ever did. I had lost soooo much weight and everyone (including myself) thought I was dying. I couldn't eat and I could barely walk through the house. And, the coughing was so severe I was never able to sleep. Sat up in bed for two years. I could go on and on...… just saying, whatever it takes, get to Mayo's. It's a remarkable place. Until you've been, you cannot imagine the kindness and help you will receive. My doctor is Teng Moua in Rochester but there are many others with stellar reputations. They need a cat scan and a sputum test to get you on the right track. I do hope you just decide to make a trip to one of their facilities. It will change your life.
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2 Reactions@jweisser @auntnanny I so agree with Auntnanny about Mayo! I have been mentally tortured since diagnosis (6 mo's ago) as I was told nothing..NOTHING about the disease, by my pulmonologist, other than I had it. So I finally got to Mayo this past week and the Dr. smiled at me and said "so you filled in the blanks". It is indeed scary when you do not know what is happening to your body and how to react and treat it. Do yourself a Huge favor and see someone you can trust at either Mayo or maybe New Jewish Health. I feel as though I have my life back now. Mine are mild cases of MAC and Bronchiectasis but I feel confident on how to proceed. These people are professionals that will get to the bottom of your issues and help you with the best treatment plan. Will your insurance plan cover Mayo and can you get there? They work as a team there instead of picking a specialist here and there as was Aunt Nanny's experience....and then winding up questioning who to believe and who's opinion to follow. Just my thought on it as I hate to see you continue along with such uncertainty. Kate
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2 ReactionsWhat I cannot understand is how a Pulmonary/Critical Care Doctor can diagnose me with MAC, tell me I just got too sick on meds, stop meds and now tell me, I just need to exercise. Do you just get rid of MAC or stop treatment? "you are out of shape because you need to exercise." I literally can't sleep, lost the weight, and told my downhill spiral probably due to depression as well." Did anyone have these up and down temperatures? Does anyone have difficulties with a CPAP?
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1 ReactionI don't have any advice, but I can relate, and let you know you're not alone. My case sounds remarkably similar to yours, although my Advair is 500/50. I started treatment for MAC in May, and some days I feel fine, but other days I have very little energy. Try to stay positive, and keep walking. I also do weights and shorter work outs now so I can still keep muscle strength. It helps. I hope someone on here can help you find some options for reducing your medical bills.
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2 ReactionsIs anyone going to Mayo in Scottsdale, AZ?
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1 ReactionKate, Thanks for the message. Yes I can get to Mayo in Rochester, my two sisters will go with me and my husband will stay home and take care of the animals. I will do the breathing test Monday in Rapid City then see how soon I can see a local Pulmonologist, if it's not going to be soon for the Pulmonologist, my PA will send me to Mayo. One of my sisters has gone to Mayo with her husband numerous times so she knows what places to stay and all the procedure. There are times I feel almost human than the fatigue hit and I could just crawl in a hole. Janice
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3 Reactions@jweisser ...Janice...So glad to hear you can make it to Mayo and that is great that your sisters will accompany you. It is very comforting to get the opinion and direction of a true pro that knows how to deal with Mac & Bronchiectasis. Good luck and I hope that you feel better soon!! Keep us updated please. Kate
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2 Reactions@jweisser Hi Janet. Fatigue has me by the tail too right now. I hope that you do get to the Mayo. They will def put you on the right path.
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1 Reaction@alleycatkate excellent advice, Kate.
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