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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Terri M., Volunteer Mentor
@windwalker
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@jweisser I had an ultra sound that showed Bronchiectasis, my doctor ordered blood tests that all show normal. I'm so fatigued and dizzy, not sure if it's from bronchiectasis or something else going on. Five years ago I had breast cancer with chemo and radiation. I still have a couple of pulmonary tests that might show a reason. I don't even know what bronchiectasis is. All new to me.
@jweisser Hi there. I am glad that you are seeing a pulmonolgist soon. If your dr. doesn't offer a CT Scan or sputem test; be sure to ask for those two things. The CT Scan is the best test for bronchiectasis. It will show the actual structures inside the lungs. That way, your pulmonolgist can see what is going on in your lungs. The sputem test is to see if mac or pseudomonas is growing in your lungs. These two infections are commonly found in people with bronchiectasis. They cause the coughing and fatigue. If you don't have them now, you may in the future, so you want to get regular sputem tests. I have had mac/bronchiectasis since 2005. I did not begin to lose a lot of weight until 2016. That was due to a pseudomonas infection. I went from 143 lbs to 116 lbs in 8 months. Since treatment in 2016; my weight is coming back. My point is, you may not be losing weight now, but you may in the future. It is one of the warning signs of an active infection. I hope you will take the time to read from the Discussion Board. It is on this group's home page and has a list of helpful topics. I hope you get to feeling better soon.
@terri M, I have had the ultra sound, that's where they found the Bronchiectasis, I haven't had a sputum test, however they did do a nasal test, not sure what that was supposed to show. On Monday have a breathing test, then we wait for an appointment with pulmonologist. I just had a message from my PA saying if I haven't heard from the pulmonologist in a week to call her and she can set me up for Mayo Clinic. I'm just so extremely fatigued with a lot of pressure in my head. I don't know if this is all related to the lungs or not, I know I'm sure tired of being tired. I will go to the Discussion Board.
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@windwalker @jweisser Hi there. I am glad that you are seeing a pulmonolgist soon. If your dr. doesn't offer a CT Scan or sputem test; be sure to ask for those two things. The CT Scan is the best test for bronchiectasis. It will show the actual structures inside the lungs. That way, your pulmonolgist can see what is going on in your lungs. The sputem test is to see if mac or pseudomonas is growing in your lungs. These two infections are commonly found in people with bronchiectasis. They cause the coughing and fatigue. If you don't have them now, you may in the future, so you want to get regular sputem tests. I have had mac/bronchiectasis since 2005. I did not begin to lose a lot of weight until 2016. That was due to a pseudomonas infection. I went from 143 lbs to 116 lbs in 8 months. Since treatment in 2016; my weight is coming back. My point is, you may not be losing weight now, but you may in the future. It is one of the warning signs of an active infection. I hope you will take the time to read from the Discussion Board. It is on this group's home page and has a list of helpful topics. I hope you get to feeling better soon.
Terri, In order to get a sputum test I assume you have to be coughing up some of the phlegm. Right now I'm not coughing up anything. I do a lot of hacking in the morning trying to clear out my throat, but it never totally comes up, just far enough to swallow. How is a sputum test done, I assume you have to be able to get something coughed up to test. Monday is the breathing test if we can get there. They are predicting 6" of snow in this area and we have to drive an hour to the hospital.
auntnanny
@auntnanny
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jweisser …….Yes, you need to cough up something and spit it into a sterile cup that will be provided by your doctor or hospital. You can refrigerate it while waiting for another coughing spell. If you are using a nebulizer and saline, the saline is supposed to help you be able to cough. At Mayo's when they wanted a sample from me they would take me to a little room where there was a machine that was hooked up to saline and I would breathe that to get the coughing started. (Actually, I can cough up phlegm most of the time and don't need the saline but Mayo's use that for those who need help). I have an acquaintance who has a vest she wears to help her cough and get the "gunk" up and out. She thinks the vest is great. I haven't needed that type help, but it is available. Also, if you can't cough it up, they can do a bronchoscopy and clear it out for you. I know a lady who has this done almost every month. I've never had one but it works for her. Personally, I can usually cough up something right after eating. I don't know if it might help you. Just saying ………
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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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auntnanny
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jweisser.…… 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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alleycatkate
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@jweisser 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.
@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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Jane S. Brown
@macjane
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What 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?
I 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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marilyns
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@windwalker @jweisser Hi there. I am glad that you are seeing a pulmonolgist soon. If your dr. doesn't offer a CT Scan or sputem test; be sure to ask for those two things. The CT Scan is the best test for bronchiectasis. It will show the actual structures inside the lungs. That way, your pulmonolgist can see what is going on in your lungs. The sputem test is to see if mac or pseudomonas is growing in your lungs. These two infections are commonly found in people with bronchiectasis. They cause the coughing and fatigue. If you don't have them now, you may in the future, so you want to get regular sputem tests. I have had mac/bronchiectasis since 2005. I did not begin to lose a lot of weight until 2016. That was due to a pseudomonas infection. I went from 143 lbs to 116 lbs in 8 months. Since treatment in 2016; my weight is coming back. My point is, you may not be losing weight now, but you may in the future. It is one of the warning signs of an active infection. I hope you will take the time to read from the Discussion Board. It is on this group's home page and has a list of helpful topics. I hope you get to feeling better soon.
Is anyone going to Mayo in Scottsdale, AZ?
@alleycatkate @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
Kate, 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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alleycatkate
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@jweisser Kate, 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
@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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Terri M., Volunteer Mentor
@windwalker
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@jweisser Kate, 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
@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.
Terri M., Volunteer Mentor
@windwalker
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@alleycatkate @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
@alleycatkate excellent advice, Kate.
@auntnanny
jweisser.…… thank you for your note. It's helpful. Yes, I think not exerting some of those muscles helps a lot. I don't take anything except two Aleve each morning. It's as good as the stronger drugs and doesn't have the same side effects.