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Need to vent
- Thread starter thelizardqueen
- Start date
Scarlett81
New member
Hey Liz,
I'm really sorry you have to deal with this crap. I may be wrong-but isn't it CF Foundation standard to have PFTs at every visit (assuming you go every 3 months), and then also when you are sick? Cultures as well...?
So if this is a CFF acredited center, then maybe you should firmly show your doctor this, and maybe even tell him if things don't change you'll have to contact the CFF and have them go over the standard procedures with you and find another doctor. Like a firm but not overly bi***y way of saying-I'm calling the foundation b/c you're not following protocol. After all, these centers take the name of CFF reccomended center in the hope that they'll get more patients b/c the Foundation believes they're following protocol.
This is a pain though. Good for you for caring enough about yourself to call and make your own appointments. I don't think you should totally leave your center, a bad one may be better than none at all. But maybe you'll just have to keep working with your family doctor from now on.
Listen-you know I've had post traumatic stress disorder DX for a while now. It's under control better, but it is also a very 'panicky-anxiety' type problem. If you ever need to talk let me know. I'm not on meds for it, I would definately do that, but for now my psych doesn't think I should. But I do definately see a connection in myself between my anxiety and my physical health. My anxiety disorder definately doesn't cause exacerbations, though or infections or sharp pains! I'm just saying- there could be some slight connection. Not related to this current problem of yours, but maybe in other areas? If you ever want to know more about what I mean let me know. I don't want to bore you.
I had a doctor tell me once too that sharp stabbing pains in my lungs were all in my head. And when I was like 16 after my parent's had left the hospital he sent a psych doctor in with psychotic meds for me to take. My parents almost threatened to sue! And that doctor was fired soon after. It turned out I had pleuresy. So there you go-they don't always know.
I'm really sorry you have to deal with this crap. I may be wrong-but isn't it CF Foundation standard to have PFTs at every visit (assuming you go every 3 months), and then also when you are sick? Cultures as well...?
So if this is a CFF acredited center, then maybe you should firmly show your doctor this, and maybe even tell him if things don't change you'll have to contact the CFF and have them go over the standard procedures with you and find another doctor. Like a firm but not overly bi***y way of saying-I'm calling the foundation b/c you're not following protocol. After all, these centers take the name of CFF reccomended center in the hope that they'll get more patients b/c the Foundation believes they're following protocol.
This is a pain though. Good for you for caring enough about yourself to call and make your own appointments. I don't think you should totally leave your center, a bad one may be better than none at all. But maybe you'll just have to keep working with your family doctor from now on.
Listen-you know I've had post traumatic stress disorder DX for a while now. It's under control better, but it is also a very 'panicky-anxiety' type problem. If you ever need to talk let me know. I'm not on meds for it, I would definately do that, but for now my psych doesn't think I should. But I do definately see a connection in myself between my anxiety and my physical health. My anxiety disorder definately doesn't cause exacerbations, though or infections or sharp pains! I'm just saying- there could be some slight connection. Not related to this current problem of yours, but maybe in other areas? If you ever want to know more about what I mean let me know. I don't want to bore you.
I had a doctor tell me once too that sharp stabbing pains in my lungs were all in my head. And when I was like 16 after my parent's had left the hospital he sent a psych doctor in with psychotic meds for me to take. My parents almost threatened to sue! And that doctor was fired soon after. It turned out I had pleuresy. So there you go-they don't always know.
Scarlett81
New member
Hey Liz,
I'm really sorry you have to deal with this crap. I may be wrong-but isn't it CF Foundation standard to have PFTs at every visit (assuming you go every 3 months), and then also when you are sick? Cultures as well...?
So if this is a CFF acredited center, then maybe you should firmly show your doctor this, and maybe even tell him if things don't change you'll have to contact the CFF and have them go over the standard procedures with you and find another doctor. Like a firm but not overly bi***y way of saying-I'm calling the foundation b/c you're not following protocol. After all, these centers take the name of CFF reccomended center in the hope that they'll get more patients b/c the Foundation believes they're following protocol.
This is a pain though. Good for you for caring enough about yourself to call and make your own appointments. I don't think you should totally leave your center, a bad one may be better than none at all. But maybe you'll just have to keep working with your family doctor from now on.
Listen-you know I've had post traumatic stress disorder DX for a while now. It's under control better, but it is also a very 'panicky-anxiety' type problem. If you ever need to talk let me know. I'm not on meds for it, I would definately do that, but for now my psych doesn't think I should. But I do definately see a connection in myself between my anxiety and my physical health. My anxiety disorder definately doesn't cause exacerbations, though or infections or sharp pains! I'm just saying- there could be some slight connection. Not related to this current problem of yours, but maybe in other areas? If you ever want to know more about what I mean let me know. I don't want to bore you.
I had a doctor tell me once too that sharp stabbing pains in my lungs were all in my head. And when I was like 16 after my parent's had left the hospital he sent a psych doctor in with psychotic meds for me to take. My parents almost threatened to sue! And that doctor was fired soon after. It turned out I had pleuresy. So there you go-they don't always know.
I'm really sorry you have to deal with this crap. I may be wrong-but isn't it CF Foundation standard to have PFTs at every visit (assuming you go every 3 months), and then also when you are sick? Cultures as well...?
So if this is a CFF acredited center, then maybe you should firmly show your doctor this, and maybe even tell him if things don't change you'll have to contact the CFF and have them go over the standard procedures with you and find another doctor. Like a firm but not overly bi***y way of saying-I'm calling the foundation b/c you're not following protocol. After all, these centers take the name of CFF reccomended center in the hope that they'll get more patients b/c the Foundation believes they're following protocol.
This is a pain though. Good for you for caring enough about yourself to call and make your own appointments. I don't think you should totally leave your center, a bad one may be better than none at all. But maybe you'll just have to keep working with your family doctor from now on.
Listen-you know I've had post traumatic stress disorder DX for a while now. It's under control better, but it is also a very 'panicky-anxiety' type problem. If you ever need to talk let me know. I'm not on meds for it, I would definately do that, but for now my psych doesn't think I should. But I do definately see a connection in myself between my anxiety and my physical health. My anxiety disorder definately doesn't cause exacerbations, though or infections or sharp pains! I'm just saying- there could be some slight connection. Not related to this current problem of yours, but maybe in other areas? If you ever want to know more about what I mean let me know. I don't want to bore you.
I had a doctor tell me once too that sharp stabbing pains in my lungs were all in my head. And when I was like 16 after my parent's had left the hospital he sent a psych doctor in with psychotic meds for me to take. My parents almost threatened to sue! And that doctor was fired soon after. It turned out I had pleuresy. So there you go-they don't always know.
Hi Liz, I never got good at dealing with Kep while I was there. I went home more than once in tears I was so frustrated. I did see another doc there when he was away, can't remember his name it was really long. He was really good though.
The only thing that helped me there was when Tamara started. I got along with her very well and trusted her. My husband always gave me sh@@ because I always came home screaming mad and wouldn't say anything to him. I wish I had. Good luck with him. Remember you are the customer. He is the service provider.
Take care,
Charlene
Liz, please be persistant our health is fragile. If things are left to long there can be permanent long term side effects. I have learned this the hard way this year. I am still not good at being persistent with the docs
The only thing that helped me there was when Tamara started. I got along with her very well and trusted her. My husband always gave me sh@@ because I always came home screaming mad and wouldn't say anything to him. I wish I had. Good luck with him. Remember you are the customer. He is the service provider.
Take care,
Charlene
Liz, please be persistant our health is fragile. If things are left to long there can be permanent long term side effects. I have learned this the hard way this year. I am still not good at being persistent with the docs
I would tell them that anything is possible and it could be Anxiety but you still want to rule out infection. This way you are siding with them but you are showing that you are serious about getting the help you need. Are you sure your doctor is saying all this and it is not your nurse who is making these statements up? Some nurses can be a real pain.
Good luck<img src="i/expressions/face-icon-small-happy.gif" border="0">
Good luck<img src="i/expressions/face-icon-small-happy.gif" border="0">
I agree with Risa, could be the nurse, too! I've gone round and round a few times with the ones at DS's clinic. Time and time again I ask that the DOCTOR return my call and get some silly vague response that's supposedly from the doctor. Or the nurse calls with the culture results (I've started just requesting the paper copies), cuz I get the "DS is culturing this, but don't worry 'cuz it's rare". Get the paper copy and it shows HIB, Pseudo, Cocci...
Most recently I needed to get DS a refill on albuterol and the nurse told me I should just put it in water and see if it floats and hung up on me. Hello?!! Wouldn't even let me get a word in edgewise to explain that I needed regular albuterol for the nebulizer, that this wan't an inhaler. Liza
Most recently I needed to get DS a refill on albuterol and the nurse told me I should just put it in water and see if it floats and hung up on me. Hello?!! Wouldn't even let me get a word in edgewise to explain that I needed regular albuterol for the nebulizer, that this wan't an inhaler. Liza
thelizardqueen
New member
Risa - I've been with my doc for about 7 years now, and I know that this is something he would say. At my clinic it seems that the nurse see's me more then the doctor. I will see my nurse for about a half hour, and then my doc will come in, she will tell him what her and I went over, and then he will say 'yeah ok - see you next time'. He doesn't listen to my chest - my nurse does. He doesn't go over my cultures - my nurse does. Etc. I miss my old nurse, who knew what she was talking about. My new nurse is a push over who admitted herself to me that she doesn't know a whole lot about CF. My doctor is not very proactive. He doens't do a lot of testing unless he see's it necessary. Like I said in an earlier post, when I had severe hemoptysis (I was coughing up cups of blood a day for two months straight, and was in emergency continually), he kept telling me it was vessels breaking, and took forever to make a diagnosis. Finally even after a bronch, and another few weeks of blood, he finally decided that they would do an embolization, and even then he still didn't think anything was too abnormal.
I would gladly switch docs if I could. I would even consider moving out of province to get better care, because I know that I'm not getting the best care possible. I have an appt with my GP tomorrow, and I'll get him to run a few tests for me, to see if he comes up with something other then 'my CF is just entering a new stage'. I'm hopeful that this isn't the case, because I think I know my body, and I know that there is something different inside of me (if that makes sense). For all I know, I could be wrong. But its wrong of my doc to push off my concerns as anxiety, and not even bother to test. My nurse even told me that had I not told them about my anxiety, they never would have blamed my problems I'm having now on it. We'll see what happens with my GP tomorrow. Will keep you guys posted.
I would gladly switch docs if I could. I would even consider moving out of province to get better care, because I know that I'm not getting the best care possible. I have an appt with my GP tomorrow, and I'll get him to run a few tests for me, to see if he comes up with something other then 'my CF is just entering a new stage'. I'm hopeful that this isn't the case, because I think I know my body, and I know that there is something different inside of me (if that makes sense). For all I know, I could be wrong. But its wrong of my doc to push off my concerns as anxiety, and not even bother to test. My nurse even told me that had I not told them about my anxiety, they never would have blamed my problems I'm having now on it. We'll see what happens with my GP tomorrow. Will keep you guys posted.
We also have a doctor that isn't very proactive. Thankfully, we go to another clinic twice a year about 250 miles away that is.
DS's local cf doctor has a dreadful bedside manner. What he says is "law" and because he goes to the annual CF conference, he's viewed by the other doctors in the clinic as being the expert. He just doesn't like to be questioned and I believe that he's threatened by the care DS gets elsewhere. He'll make broad sweeping statements about how what we're doing is bad and never bothers explaining anything.
It's gotten to the point with this doctor that I CANNOT stand to be in the same room with him. There are questions I may have, but I don't dare ask him because I get lectured, yelled at... And then I leave the clinic angry because I didn't say anything. But when that doctor enters the room, my blood just starts to boil 'cuz of things he's said in the past. Because this isn't doing me or our son any good, I have decided that at the next clinic appointment I am going to listen to what this doctor has to say, I am going to ask him questions that are on my list regarding medications and treatments. And darnit -- I'm am going to politely ask him to wash his hands before he touches DS. I swear to god, he's soooo concerned about DS being in daycare, yet has no worries about the community waiting room or proper handwashing!!!
So maybe next time -- stand your ground. Say, hey, I have a list of things I'd like to talk to you about. Tell him how you feel about the way you've been treated (or not treated). Maybe you can clear the air, maybe you'll get some respect for him... Or maybe you'll come to the realization that maybe you need to go elsewhere (hopefully locally). For me, I just hate regretting that I didn't say something at the time and then having to wait 4-6 months until I see this person again.
Liza
DS's local cf doctor has a dreadful bedside manner. What he says is "law" and because he goes to the annual CF conference, he's viewed by the other doctors in the clinic as being the expert. He just doesn't like to be questioned and I believe that he's threatened by the care DS gets elsewhere. He'll make broad sweeping statements about how what we're doing is bad and never bothers explaining anything.
It's gotten to the point with this doctor that I CANNOT stand to be in the same room with him. There are questions I may have, but I don't dare ask him because I get lectured, yelled at... And then I leave the clinic angry because I didn't say anything. But when that doctor enters the room, my blood just starts to boil 'cuz of things he's said in the past. Because this isn't doing me or our son any good, I have decided that at the next clinic appointment I am going to listen to what this doctor has to say, I am going to ask him questions that are on my list regarding medications and treatments. And darnit -- I'm am going to politely ask him to wash his hands before he touches DS. I swear to god, he's soooo concerned about DS being in daycare, yet has no worries about the community waiting room or proper handwashing!!!
So maybe next time -- stand your ground. Say, hey, I have a list of things I'd like to talk to you about. Tell him how you feel about the way you've been treated (or not treated). Maybe you can clear the air, maybe you'll get some respect for him... Or maybe you'll come to the realization that maybe you need to go elsewhere (hopefully locally). For me, I just hate regretting that I didn't say something at the time and then having to wait 4-6 months until I see this person again.
Liza
Hi,
I don't think antibiotics will get rid of aspergillis. You need to be on something like spornox or amphotericin nebs for a fungus. My kids are treated at Childrens Hospital in Boston. My 11 year old daughter has aspergillis and first she was put on sporonox for 1 year (it's a pill) but after she developed liver problems they put her on amphotericn nebs. It tastes aweful but it works. (The sporonox didn't cause the liver stuff).
Hope this helps.
Susanna
I don't think antibiotics will get rid of aspergillis. You need to be on something like spornox or amphotericin nebs for a fungus. My kids are treated at Childrens Hospital in Boston. My 11 year old daughter has aspergillis and first she was put on sporonox for 1 year (it's a pill) but after she developed liver problems they put her on amphotericn nebs. It tastes aweful but it works. (The sporonox didn't cause the liver stuff).
Hope this helps.
Susanna
thelizardqueen
New member
Well - thought I would update you all on my Aspergillus saga. I went to see my GP today about it to get the 2nd opinion I talked about to you all - and he gave me the blood test and took some x-rays. I explained to him all of my symptoms, how I've been feeling, etc and told him I was concerned with this. He said better to be safe then sorry, and did the necessary tests on me. Now I just have to wait for the results to come in. I could be wrong, but I'm glad that I had the test to at least rule out Aspergillus, but we'll see. My GP even said that Aspergillus can disguise its selfself as Asthma or CF getting worse. So we'll see.
Scarlett81
New member
Hey Liz,
I'm still thinking of you too. I hope you get answers.
Why don't you just move down here with me and we'll go to the clinic together??!!!
(as long as you don't mind catching cepacia!)
Luv
I'm still thinking of you too. I hope you get answers.
Why don't you just move down here with me and we'll go to the clinic together??!!!
(as long as you don't mind catching cepacia!)
Luv
thelizardqueen
New member
Thanks for all the support guys. I'll definitly keep you posted with the outcome. Whether or not it is Aspergillus, I'm just glad that I stood up for myself, and didn't say 'oh, well guess its just my CF getting worse.' without seeing if it could be something else!