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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello poodledoc, Sounds like you went to more than one Pulmonologist until you finally got service! After my Bronchoscopy last October, the second opinion Pulmonologist said he could find nothing that was causing the choking mucus. That was that, because his office will not answer phone calls. Not knowing me--and if I were to read what was just written--I would probably be thinking "she must be some kind of irritating nut, for the doctor to ignore her!" My husband says to tell you I am not!!! Haha. Really, there is no reason for the doctor to treat me this way, and it is very confusing and hurtful. The last time I spoke with his office, his nurse was yelling at me on the phone saying they would not prescribe antibiotics. I asked her what was I supposed to do, die? Without antibiotics, the mucous changes consistency which is impossible to cough up no matter what method is used. The nurse just laughed. So, for the 20th time, it was off to the ER, because my throat closes up. Only then, after it is critical, will antibiotics be prescribed. This vicious cycle is ongoing. The part that is really confusing is, they did find e-coli in the Lavage sample, and MRSA, plus Stenotrophomonas Maltophilia in a sputum sample. I was once again in the ER coughing up blood, and barking like a seal in a futile attempt at getting the cement in my lungs to break loose. Sorry, no jackhammer available. Honestly, if they do not figure this out, my life is surely going to be cut way short. Thanks for your kind reply, and I hope you feel better.
Replies to "Hello poodledoc, Sounds like you went to more than one Pulmonologist until you finally got service!..."
Hi, Connie-
I am so glad I came across your post. You sound like you are in the same situation as I. I was diagnosed in October 2020. One of the most terrifying symptoms I am having is my throat closing/swelling. When it is at its worst I I feel like I have to sleep with my head in just the right position or I am not going to get air through my upper throat. I have had about 15 good days since I was diagnosed and this was about 3 days into a 10 day course of Augmentin through about 4 or 5 days after I took my last dose. I have just been given another prescription of Augmentin by my GP but I feel like it was against his better judgement and I am terrified of the side effects that he says it may cause but the terror that I am feeling without taking it is worse. I have had 3 trips to the ER since October and I have trouble having them listen to me when I say it is my throat and not my lungs that is causing the panic. I went to an ENT and he did a laryngoscopy and said that reflux had damaged and irritated my voice box. I have had an endoscopy, a 24 hour pH-Impedance test off of my acid reducer for one week and an esophageal manometry test. Minimal/Normal results and they told me I didn't need to take my acid reducer anymore. I still have bacteria growing in a lab somewhere. The worst part of all of this is that inhalers, nebulizing and my Aerobika device make my throat situation even worse so I have only been able to do deep breathing and huff coughing for airway clearance. I also feel like I have other strange symptoms when I start to spiral like my legs feeling heavy and numbness in my toes and fingers and also my fingers being weaker. Sometimes I can hardly get the top off of a bottle of water. I will keep you posted on any developments that might be helpful to your throat situation that I find on my journey. I am so sorry you are feeling badly. This is all terrifying.
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Hope you’re now with another doctor. No one should put up with that rude behavior.