Bronchiectasis: New Diagnosis

@auntnanny, I do have access to Mayo Clinic in Rochester. My two sister would go with me for a road trip if I decide to go. That would leave my husband home with the animals. We live about 12 hours from Rochester and have been to Mayo clinic a couple of times. Not for this. The first time I was seeking treatment for Fibromyalgia the second time we went was for my niece who had colon cancer. There was nothing they could do, but we had the reassurance that what they were doing in Rapid City was what they would be doing. I will wait for my other two appointments then we might make an appointment with Mayo. Then I know I've had the latest and greatest. Is it possible this could be from radiation after breast cancer?
Thanks for this group, I've received a lot of info. Jweisser

jweisser ……. I'm curious. What did Mayo's recommend for fibromyalgia? My doctor has long told me I have it and I tried Lyrica once. Did not get along with that.

@jweisser Thanks for the update. I would urge you not to be afraid of the tests. You want to know for sure what's going on in your body so you can get the best care, to maintain the highest quality of life, no matter what. The PFT will yield good information. For me the definitive test that provided the basis for a solid diagnosis was the CT scan. Ask the pulmonologist how many cases of bronchiectasis he/she has treated. Some pulmonologists are very inexperienced when it comes to bronchiectasis. You need someone who is up on research and treatment. Please keep us informed. I join others in the forum in sending best wishes and hugs.

@windwalker Terri, I am have major reflux since I’m using Toby! And I’m wondering if you have that problem too. Is there something that’s on the natural side I can you? Thanks Rita

auntnanny, I didn't have time to stay the extra 3 weeks to go though the program at Mayo for Fibromyalgia. I tried Lyrica but didn't work for me, I now take Cymbalta which I don't think helps either.
The drug I now take for my fibro is Naltrexone 4.5 mg. In much bigger doses it's used to help take people down that are addicted to hard drugs. It helps more than anything I've tried and that's a lot. The most help I get is just know what is going to make me hurt and not overdoing. I'm wondering if this is part of my fatigue too.

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.

@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.

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.

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 ……...