I went to doctors the other day cause I was really not breathing good rember I just got out of hospital bout maybe 2 months so did pft was low at 52 usually my base is 58 so I was worried then he argued with me over having pluracy I told him it was ur staff in the hospital that said I had it then I went to er they said I had it and je said I have mucus in there but not a plug agian I told him it was his team who told me and showed me on the xray the plug. This is a new adult cf doctor they have now my first time goin cause they just made a adult cf dept but I have seen theae guys before while in hospital anyway he didnt think I had anything and doest agree with the other doctors diagnosis of mucus plug and pluracy so I was up set thinking this guy doesn't even belive a xray infront of his face so he orders another xray got it done the next day they were calling me sayimg I have a big infection in my lungs and have more nodules ok so u want me to come into hospital no he said jusy get a ct scan in the mean time I could get really sick so that is were im at waiting to get ct scan in a week with no antibiotics nothing to help this infection meanwhile im suffering with not breathing good .my question is why r all these nodules filling up my lungs and why this mucus plug that I saw on xray with a doctor still there its been there for months does anyone else have these nodules or have information that could help me I been feeling really out of breath just goin up a flight of stairs its not normal for me amd my mucus came back with multi resistant phuemonas but I think I need to go in now not when it gets really bad. They just wantcto wait for the ct scan then go from there im worried cause this is alot of bad stuff in my lungs amd I have doctors that argue over the diagnosis of mucus plug and the pluracy the only thing they agree on is all the nodules in my lungs so what to do so if anyone knows about nodules or mucus plugs or pluracy please tell me what I need to know he said it cant b pluracy cause there is no fluid thats not true thats a pluratic infusion regular pluracy is inflamation of the lining of the lung that when u breathe it moves back and forth rubbing aginst each other which causes alot of pain sorry for long text please someone that has had any of these issues please help me thank u I don't want to decline anymore than I already have ill b 36yrs july 23 hope I can try to have a good birthday and able to get out of bed one moee thing they did say I might habe to have a scope down into my lungs to take samples of this nodules and mybe reach the mucus plug can anyone who has had one let me know how it was thank u very much for listening to me I really need help cause doctors are bikkering over what I got I know what I got they told me when I left the hospital anyway thank you hope everyone is doing well and stays healthy
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xray showing even more nodules in my lungs and mucus plug still there and more
- Thread starter cam
- Start date
I don't much about your particular medical issues, my daughter has CF and her biggest problems have been GI. BUT, if I have learned nothing else, it is that not every doctor is right or wonderful just because they are a doctor. They are not Gods. You know your body, what you are feeling and what you need better than anyone else. Based on that I would say you need to speak to someone else at that hospital, the director of the CF clinic, and tell them you need to get started on some treatment right away while waiting for this scan. Plus, I believe if you were admitted they could get the scan done sooner. I also know that when you are not feeling well it is hard to advocate for yourself, do you have someone that could help you out if you are not up to it? I have found that the loud, squeaky wheel really does get oiled and I wouldn't want my daughter waiting around for a week without treatment especially if they told you there is an infection.
You might also want to consider finding another CF clinic in your area, if that is an option, when you are feeling better. We have a few options in my state, maybe you do too.
Can you just go to the ER and get admitted that way?
You might also want to consider finding another CF clinic in your area, if that is an option, when you are feeling better. We have a few options in my state, maybe you do too.
Can you just go to the ER and get admitted that way?
JustaCFmom
New member
Rosie 55 beat me to the keyboard & she is right on the mark. I wouldn't wait - I would go with the ER approach. I lost most of my hearing in one of my ears by just going to doctors instead of the ER (if only I knew then what I know now!) losing precious treatment time. That infection sounds NASTY and you know your body best. Get those antibiotics ASAP!
We are lucky, the doctors here are very proactive and don't wait for anything. They gave a presentation a few months ago and said that the people who wait are the ones who usually don't return to their baseline. functions.
Good luck & I hope you get back on track. (and Happy Birthday!)
We are lucky, the doctors here are very proactive and don't wait for anything. They gave a presentation a few months ago and said that the people who wait are the ones who usually don't return to their baseline. functions.
Good luck & I hope you get back on track. (and Happy Birthday!)
Hi there,
Sorry you are so unwell. Rosie55 and CFMom have given you good advice. If possible get an outspoken friend to go with you to your doc visit. You should go to the ER immediately. Immediately. Do not wait. As an attorney who has worked in many different law firms, I have learned many so-called professionals do not care about excellence or getting the best results. I think it is the same with doctors, unfortunately. Most want the quick fix without delving too deep. The people on this forum, such as Stephen, have literally saved my life by getting out the word about Kalydeco off label. If it weren't for Stephen I would still be getting worse and not better, and I go to UCSF, supposedly one of the best CF care centers in the country.
I don't want to freak you out, just awaken you to the reality of modern western medicine in the US. Just to give you an example of their lack of concern, I once emailed the doc about the new buffered HT saline. She responded to me in error, thinking she was responding to the nurse, by basically saying she did not have time to look into it and that it should be turfed to pharmacy.
Once you are in the ER they will have to take you seriously. Tell them you are struggling to breath. It's a fight and nobody cares about your life more than you. You determine how the docs treat you. Now, I hope you are reading this from the ER.
Sorry you are so unwell. Rosie55 and CFMom have given you good advice. If possible get an outspoken friend to go with you to your doc visit. You should go to the ER immediately. Immediately. Do not wait. As an attorney who has worked in many different law firms, I have learned many so-called professionals do not care about excellence or getting the best results. I think it is the same with doctors, unfortunately. Most want the quick fix without delving too deep. The people on this forum, such as Stephen, have literally saved my life by getting out the word about Kalydeco off label. If it weren't for Stephen I would still be getting worse and not better, and I go to UCSF, supposedly one of the best CF care centers in the country.
I don't want to freak you out, just awaken you to the reality of modern western medicine in the US. Just to give you an example of their lack of concern, I once emailed the doc about the new buffered HT saline. She responded to me in error, thinking she was responding to the nurse, by basically saying she did not have time to look into it and that it should be turfed to pharmacy.
Once you are in the ER they will have to take you seriously. Tell them you are struggling to breath. It's a fight and nobody cares about your life more than you. You determine how the docs treat you. Now, I hope you are reading this from the ER.
Also, when you get out of the ER, unless advised otherwise, keep doing your vest treatment 4 x a day. You also need to do exercises, such as yoga or the chest-twisting exercise in Pilates. Pilates does more for me than the Vest. I have nodules too but am in good health. Even before Kalydeco I was stable by sticking to a strict treatment regime. If you have trouble sticking to a treatment regime, read 'The Willpower Instinct' by Kelly McGonigal, Ph.D. It has helped me with my many, many willpower challenges. Take care.
Hi Cam. I'm hoping you're feeling better today or more confident in your medical team and their ability to help you through this. I am not a doc, as you know, but I have seen the occurrence of mucous plugs mentioned in this forum as one of the symptoms of aspergillus. I also see on the forum that there are many different forms of that fungus, although they can be difficult to treat and tend to stick with you. But mucous plugs can apparently occur without aspergillus too. Please let us know how you are doing. . . . Prayers for you and your team!