thelizardqueen
New member
Alright - so I just got off the phone with my CF nurse, and am close to tears. For the past month now I've been sick with a nasty chest infection - coughing up brown plugs, wheezing, coughing up blood on occasion, my lungs feeling like they are full with mucus, and feeling very rundown. I've been to my specialist twice now, and have been put on a series of antibiotics. First it was 2 weeks of Cipro and Cloxycyllan, followed by an additional week of both meds, followed by two weeks of Tobra. The meds seemed to help somewhat, but I cannot get rid of this lingering cough I have, and breathlessness, along with the run down kind of feeling.
My last two cultures showed Aspergillus, so I decided to look it up, and found that I have some symptoms of a reaction to this mold that I cultured a few weeks ago. I called my nurse and informed her of my concerns about wanting to be tested to see if I'm having a reaction to the Aspergillus, and she informed me that she'd talk to my doc and get back to me. Well, she called back, and informed me that my doc is not worried in the slightest. That my symptoms would be way worse if I had the reaction that I'm concerned about. My doc also told me that maybe the symptoms I am having are all in my head - just because of the simple fact that I informed him during my last checkup that I've been suffering from mild anxiety for the past 9 years, and would like to see someone about getting it under control. He informed me that my symptoms must be anxiety. I told him that I've been dealing with the anxiety for 9 years now, and I DO KNOW when I am having a mild attack. I hate the fact that I am sick, and worried about this cough that won't go away, and he informs me, that suddenly because he knows that I suffer from anxiety that the anxiety is the cause. Its like he's pushing my symptoms off on something else, so that he doesn't have to worry about it.
2 years ago I had a severe hemoptysis episode that required an embolization. 2 years ago my productive cough started. Today, my CF nurse informed me that I've been cultured Aspergillus for the past 2 years. I told her, well maybe this is something of a coralation. She says no, my doc knows my body better then I.
I'm near tears now, because they are passing my worries off, and are looking at me like 'oh, maybe its her anxiety, because she just told us that she suffers from it.'. If I hadn't told them about my anxiety, I'm sure they would be looking into this problem with more concern. I wish that I were back in the days of Childrens, where the doc took everyone of my concerns seriously. Back at childrens I did pft's every visit, and did a culture every visit. Here in Adults, I'm lucky if I do cultures twice a year, and pft's 1 time a year. I'm not a hypocondriact. I've been very healthy all my life, so why would I start thinking that there's something wrong with me, if there isn't? I just hate the fact that they are downplaying my concerns!!
My last two cultures showed Aspergillus, so I decided to look it up, and found that I have some symptoms of a reaction to this mold that I cultured a few weeks ago. I called my nurse and informed her of my concerns about wanting to be tested to see if I'm having a reaction to the Aspergillus, and she informed me that she'd talk to my doc and get back to me. Well, she called back, and informed me that my doc is not worried in the slightest. That my symptoms would be way worse if I had the reaction that I'm concerned about. My doc also told me that maybe the symptoms I am having are all in my head - just because of the simple fact that I informed him during my last checkup that I've been suffering from mild anxiety for the past 9 years, and would like to see someone about getting it under control. He informed me that my symptoms must be anxiety. I told him that I've been dealing with the anxiety for 9 years now, and I DO KNOW when I am having a mild attack. I hate the fact that I am sick, and worried about this cough that won't go away, and he informs me, that suddenly because he knows that I suffer from anxiety that the anxiety is the cause. Its like he's pushing my symptoms off on something else, so that he doesn't have to worry about it.
2 years ago I had a severe hemoptysis episode that required an embolization. 2 years ago my productive cough started. Today, my CF nurse informed me that I've been cultured Aspergillus for the past 2 years. I told her, well maybe this is something of a coralation. She says no, my doc knows my body better then I.
I'm near tears now, because they are passing my worries off, and are looking at me like 'oh, maybe its her anxiety, because she just told us that she suffers from it.'. If I hadn't told them about my anxiety, I'm sure they would be looking into this problem with more concern. I wish that I were back in the days of Childrens, where the doc took everyone of my concerns seriously. Back at childrens I did pft's every visit, and did a culture every visit. Here in Adults, I'm lucky if I do cultures twice a year, and pft's 1 time a year. I'm not a hypocondriact. I've been very healthy all my life, so why would I start thinking that there's something wrong with me, if there isn't? I just hate the fact that they are downplaying my concerns!!