Hello everyone,
There may be posts on this already but I wanted to know how you guys feel and how how handle things when you are not satisfied with your clinic protocals,etc.
Last time I went to clinic, I was less than trilled! I don't have cepacia but I was put on the cepacia hallway due to a multi-reisitant pseudo. that they say I've had for a long time ( but have never had to be on that hallway before.) So I wasn't happy about that, but I was also ticked that they never even called to tell me my results had changed. It is MY health and they don't think I need to be the first to know when things change. How do I get it across to them that it is my right to know when anything changes and I want to be informed ASAP.
Then last time I was in-patient, they said I cultured cepacia (I had never cultured it before). So I freaked out and we repeated the test which came back negative. However, when I was in-patient, I was directly across the hall from a cepacia patient. Doors are left open and you don't have to wear a mask when you are in your own room. So all kinds of air and air-borne germs can be floating around.
I've told the social worker and nurses that I'm not thrilled with the laid-back attitudes and they say they follow protocol but I'm not satisfied with that.
In fact, when I had to be on the cepacia hallway (and no offense to those of you who have cepacia, I'm just trying to protect myself) I talked to the PFT lady and she said "Well I use this PFT machine myself, if I didn't feel safe about it, I wouldn't use it." Great for you but you don't have CF so it makes no difference if you are exposed to most things or not. How dumb.
The big kicker is that I have a niece who also has CF and we see eachother all the time. We use many procautions when we spend time together, etc. And we are both seen at the same hospital, but the staff there doesn't seem to care that we could possibly infect one another if we aren't educated about changes in our status.
Have any of you dealt with this, and if so, how do you do it in a professional way. I am the one who takes care of myself and I am so careful and want to do the best I can so I can stay as healthy as long as possible. I just don't feel like they take the same seriousness when it comes to my health.
Please advise!
~Kelli
29 w/CF
There may be posts on this already but I wanted to know how you guys feel and how how handle things when you are not satisfied with your clinic protocals,etc.
Last time I went to clinic, I was less than trilled! I don't have cepacia but I was put on the cepacia hallway due to a multi-reisitant pseudo. that they say I've had for a long time ( but have never had to be on that hallway before.) So I wasn't happy about that, but I was also ticked that they never even called to tell me my results had changed. It is MY health and they don't think I need to be the first to know when things change. How do I get it across to them that it is my right to know when anything changes and I want to be informed ASAP.
Then last time I was in-patient, they said I cultured cepacia (I had never cultured it before). So I freaked out and we repeated the test which came back negative. However, when I was in-patient, I was directly across the hall from a cepacia patient. Doors are left open and you don't have to wear a mask when you are in your own room. So all kinds of air and air-borne germs can be floating around.
I've told the social worker and nurses that I'm not thrilled with the laid-back attitudes and they say they follow protocol but I'm not satisfied with that.
In fact, when I had to be on the cepacia hallway (and no offense to those of you who have cepacia, I'm just trying to protect myself) I talked to the PFT lady and she said "Well I use this PFT machine myself, if I didn't feel safe about it, I wouldn't use it." Great for you but you don't have CF so it makes no difference if you are exposed to most things or not. How dumb.
The big kicker is that I have a niece who also has CF and we see eachother all the time. We use many procautions when we spend time together, etc. And we are both seen at the same hospital, but the staff there doesn't seem to care that we could possibly infect one another if we aren't educated about changes in our status.
Have any of you dealt with this, and if so, how do you do it in a professional way. I am the one who takes care of myself and I am so careful and want to do the best I can so I can stay as healthy as long as possible. I just don't feel like they take the same seriousness when it comes to my health.
Please advise!
~Kelli
29 w/CF