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Questions to ask at your first appointment after diagnosis
MAC & Bronchiectasis | Last Active: Jan 1, 2021 | Replies (23)Comment receiving replies
Hi Coco1970, Did you get your appt moved up from December? I know it can be frightening to feel terrible and not really know how to try to fix it. Hopefully, your dr has experience in treating bronchiectasis. That would be the first thing I'd ask about. Experience! Next, I'd ask for more details about your right middle lobe. I am curious about that one myself because my right middle lobe is just about obliterated from years of infection and no proper treatment. It seems that most of us in this group has issues in that area of the lung. I wonder why this disease always attacks that first? Have you had a sputem test recently? if not, insist on one of those complete with a suseptibility test. You may have a specific infection, whether it be mac, mai, or pseudomonas, pneumonia, or some other thing. Once you have the answers to that, then formulate a treatment plan. I think for right now, you should cross that bridge when you get to it. Ask your dr about using 7% saline in a nebulizer, has he/she ever heard of that as part of managing infections. Have you ever been tested for GERD? (acid reflux) Please scroll to the top of this page and click on GROUPS, then a dropdown will offer a choice of Member List, click on that and look for @katemn, and click on her. She is a past mentor that has lots of info in her posts. Meanwhile, I will see if I can find a list of questions she may have posted several yrs ago. Just hang in there, I feel certain that you will get a grip on this illness and get your quality of life back.
Replies to "Hi Coco1970, Did you get your appt moved up from December? I know it can be..."
I have had such a hard time since the end of October. After the first episode the only thing I could think of that had changed was that I was reaching the two week mark on being on Flovent. The pulmonologist told me to quit taking it. I did and felt a little better for a short time but then felt worse again. My appointment in November ended up being with a PA in the practice who told me to start back on the Flovent and prescribed an Aerobica device. It was a little disheartening. He was looking at my C/T scan for the first time as he was showing it to me. He said my esophagus sits funny and I have a small hiatal hernia and that aspiration is most likely the cause of the damage to that lobe. After I started taking the Flovent again I got worse and between it and the vibration of the Aerobica device I was having to sleep with my neck in the just the right position because I had swollen tissue in my larynx. Luckily, I was able to keep the appointment with the pulmonologist at the end of December. He has started me on Singular and we have a follow-up appointment at the end of January. He said we will most likely schedule a bronchoscopy and another C/T scan then. I also have an endoscopy schedule the fist week of January. I know I need to get this done but I am so scared to go under anesthesia right now. I have terrible pain in my upper chest towards my shoulders and behind my right shoulder blade and if I do even a quarter of what I was doing prior to the end of October I have to use the rescue inhaler. The pulmonologist also ordered bloodwork that came back with a low level positive on the ANA test. My GP prescribed me nebulized budesonide after speaking with the pulmonologist but I just started it on Thursday so I'm not sure if it is going to help anything. I had an echocardiogram and everything was normal on it. It is so frustrating. I know something has changed. I'm not sure what everyone else's experiences are with this. I was thinking it would be a gradual decline with some ups and downs. I have been to the ER 3 times since the end of October with tingling toes and fingers and my calves and a few tremors in my left arm.
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Terri, I read somewhere that the right middle lung lobe and the left lower lobe (lingula) are affected more often with NTM/MAC because the bronchi from those lobes enter the larger bronchi at a somewhat downward angle which makes it harder to move mucous or sputum upward where it needs to be going. Another reason to do good airway clearance every day if you have bronchiectasis.