Hello everyone, NY CFer, new to this blog thing

[JustDucky]

Just saw this post...I too go to AMC, just started to about a year ago. The doc I see mostly is very good, I have only met two others through hospitalizations there. I will say that they have been aggressive with me when it comes to infections and IV's, but I think that is partly because I have an aggressive primary care doc, she sees me every month and when things go downhill, she gives them a call and arrangements are made for admission. I have cepacia so they never see me on the regular CF day, the doc has to schedule me in on a different day with his nurse so I will say that they are accomodating in that respect. As far as the visits go, the doc is usually pretty open to any suggestions, but as I have said, I have only met two of the other pulmos through hospitalization.

That is odd that they have only done a few xrays and cultures over the years. Everytime I go, I have a sample for them whether they want it or not. As for the xrays, I get them frequently enough on admissions. Maybe you can switch to a different doc in the practice or a different center all together if they aren't listening to you. I too am atypical by any means, but am treated just as agressively. I will say that alot of footwork is done by my primary care doc, such as bone scans, OGTT, many of my sputum cultures which she then sends to the docs in AMC along with any bloodwork.

I am sorry you are going through all of this...I can identify with you as far as calling anyone on the weekend especially if it isn't your normal doctor. I usually go through my primary to start antibiotics or some therapy if that happens. I hope that things work out for you, I know how frustrating it is when a doctor does not listen to you or take you seriously. Hugs, Jenn

 

[JustDucky]

Just saw this post...I too go to AMC, just started to about a year ago. The doc I see mostly is very good, I have only met two others through hospitalizations there. I will say that they have been aggressive with me when it comes to infections and IV's, but I think that is partly because I have an aggressive primary care doc, she sees me every month and when things go downhill, she gives them a call and arrangements are made for admission. I have cepacia so they never see me on the regular CF day, the doc has to schedule me in on a different day with his nurse so I will say that they are accomodating in that respect. As far as the visits go, the doc is usually pretty open to any suggestions, but as I have said, I have only met two of the other pulmos through hospitalization.

That is odd that they have only done a few xrays and cultures over the years. Everytime I go, I have a sample for them whether they want it or not. As for the xrays, I get them frequently enough on admissions. Maybe you can switch to a different doc in the practice or a different center all together if they aren't listening to you. I too am atypical by any means, but am treated just as agressively. I will say that alot of footwork is done by my primary care doc, such as bone scans, OGTT, many of my sputum cultures which she then sends to the docs in AMC along with any bloodwork.

I am sorry you are going through all of this...I can identify with you as far as calling anyone on the weekend especially if it isn't your normal doctor. I usually go through my primary to start antibiotics or some therapy if that happens. I hope that things work out for you, I know how frustrating it is when a doctor does not listen to you or take you seriously. Hugs, Jenn

 

[JustDucky]

Just saw this post...I too go to AMC, just started to about a year ago. The doc I see mostly is very good, I have only met two others through hospitalizations there. I will say that they have been aggressive with me when it comes to infections and IV's, but I think that is partly because I have an aggressive primary care doc, she sees me every month and when things go downhill, she gives them a call and arrangements are made for admission. I have cepacia so they never see me on the regular CF day, the doc has to schedule me in on a different day with his nurse so I will say that they are accomodating in that respect. As far as the visits go, the doc is usually pretty open to any suggestions, but as I have said, I have only met two of the other pulmos through hospitalization.

That is odd that they have only done a few xrays and cultures over the years. Everytime I go, I have a sample for them whether they want it or not. As for the xrays, I get them frequently enough on admissions. Maybe you can switch to a different doc in the practice or a different center all together if they aren't listening to you. I too am atypical by any means, but am treated just as agressively. I will say that alot of footwork is done by my primary care doc, such as bone scans, OGTT, many of my sputum cultures which she then sends to the docs in AMC along with any bloodwork.

I am sorry you are going through all of this...I can identify with you as far as calling anyone on the weekend especially if it isn't your normal doctor. I usually go through my primary to start antibiotics or some therapy if that happens. I hope that things work out for you, I know how frustrating it is when a doctor does not listen to you or take you seriously. Hugs, Jenn

 

[JustDucky]

Just saw this post...I too go to AMC, just started to about a year ago. The doc I see mostly is very good, I have only met two others through hospitalizations there. I will say that they have been aggressive with me when it comes to infections and IV's, but I think that is partly because I have an aggressive primary care doc, she sees me every month and when things go downhill, she gives them a call and arrangements are made for admission. I have cepacia so they never see me on the regular CF day, the doc has to schedule me in on a different day with his nurse so I will say that they are accomodating in that respect. As far as the visits go, the doc is usually pretty open to any suggestions, but as I have said, I have only met two of the other pulmos through hospitalization.

That is odd that they have only done a few xrays and cultures over the years. Everytime I go, I have a sample for them whether they want it or not. As for the xrays, I get them frequently enough on admissions. Maybe you can switch to a different doc in the practice or a different center all together if they aren't listening to you. I too am atypical by any means, but am treated just as agressively. I will say that alot of footwork is done by my primary care doc, such as bone scans, OGTT, many of my sputum cultures which she then sends to the docs in AMC along with any bloodwork.

I am sorry you are going through all of this...I can identify with you as far as calling anyone on the weekend especially if it isn't your normal doctor. I usually go through my primary to start antibiotics or some therapy if that happens. I hope that things work out for you, I know how frustrating it is when a doctor does not listen to you or take you seriously. Hugs, Jenn

 

[JustDucky]

Just saw this post...I too go to AMC, just started to about a year ago. The doc I see mostly is very good, I have only met two others through hospitalizations there. I will say that they have been aggressive with me when it comes to infections and IV's, but I think that is partly because I have an aggressive primary care doc, she sees me every month and when things go downhill, she gives them a call and arrangements are made for admission. I have cepacia so they never see me on the regular CF day, the doc has to schedule me in on a different day with his nurse so I will say that they are accomodating in that respect. As far as the visits go, the doc is usually pretty open to any suggestions, but as I have said, I have only met two of the other pulmos through hospitalization.

That is odd that they have only done a few xrays and cultures over the years. Everytime I go, I have a sample for them whether they want it or not. As for the xrays, I get them frequently enough on admissions. Maybe you can switch to a different doc in the practice or a different center all together if they aren't listening to you. I too am atypical by any means, but am treated just as agressively. I will say that alot of footwork is done by my primary care doc, such as bone scans, OGTT, many of my sputum cultures which she then sends to the docs in AMC along with any bloodwork.

I am sorry you are going through all of this...I can identify with you as far as calling anyone on the weekend especially if it isn't your normal doctor. I usually go through my primary to start antibiotics or some therapy if that happens. I hope that things work out for you, I know how frustrating it is when a doctor does not listen to you or take you seriously. Hugs, Jenn

 

[johannaleigh]

Welcome and sorry for the trouble with your doctor. The issue with us being treated at childrens hospitals and then going to adult doctors is that even though we are adults, we still need to be educated about cf and the doctors should act like doctors. The doctor is the one who does test and looks at the results and makes judgements about what medicine helps what problem and then comes in the room and says " the test show you have an infection and I would suggest some antibiotics to clear it up" and then awnsers questions and leaves the decision up to you. They may ask you whats been going or why did you come to the doctor, but then they should know what to do. Patients don't have to come up with thier own treatments. Mabey in your case the doctor dosen't think you need the medicine you are requesting(dnase is very expensive), I would try the salien first. But as for the way your doctor is acting it seems unprofessional to me as well. You may want to find another doctor. About your financial problems have you looked into getting medicare. I think there are ways you could get on it even if you work but i'm not sure. Anyway, it's worth looking at

 

[johannaleigh]

Welcome and sorry for the trouble with your doctor. The issue with us being treated at childrens hospitals and then going to adult doctors is that even though we are adults, we still need to be educated about cf and the doctors should act like doctors. The doctor is the one who does test and looks at the results and makes judgements about what medicine helps what problem and then comes in the room and says " the test show you have an infection and I would suggest some antibiotics to clear it up" and then awnsers questions and leaves the decision up to you. They may ask you whats been going or why did you come to the doctor, but then they should know what to do. Patients don't have to come up with thier own treatments. Mabey in your case the doctor dosen't think you need the medicine you are requesting(dnase is very expensive), I would try the salien first. But as for the way your doctor is acting it seems unprofessional to me as well. You may want to find another doctor. About your financial problems have you looked into getting medicare. I think there are ways you could get on it even if you work but i'm not sure. Anyway, it's worth looking at

 

[johannaleigh]

Welcome and sorry for the trouble with your doctor. The issue with us being treated at childrens hospitals and then going to adult doctors is that even though we are adults, we still need to be educated about cf and the doctors should act like doctors. The doctor is the one who does test and looks at the results and makes judgements about what medicine helps what problem and then comes in the room and says " the test show you have an infection and I would suggest some antibiotics to clear it up" and then awnsers questions and leaves the decision up to you. They may ask you whats been going or why did you come to the doctor, but then they should know what to do. Patients don't have to come up with thier own treatments. Mabey in your case the doctor dosen't think you need the medicine you are requesting(dnase is very expensive), I would try the salien first. But as for the way your doctor is acting it seems unprofessional to me as well. You may want to find another doctor. About your financial problems have you looked into getting medicare. I think there are ways you could get on it even if you work but i'm not sure. Anyway, it's worth looking at

 

[johannaleigh]

Welcome and sorry for the trouble with your doctor. The issue with us being treated at childrens hospitals and then going to adult doctors is that even though we are adults, we still need to be educated about cf and the doctors should act like doctors. The doctor is the one who does test and looks at the results and makes judgements about what medicine helps what problem and then comes in the room and says " the test show you have an infection and I would suggest some antibiotics to clear it up" and then awnsers questions and leaves the decision up to you. They may ask you whats been going or why did you come to the doctor, but then they should know what to do. Patients don't have to come up with thier own treatments. Mabey in your case the doctor dosen't think you need the medicine you are requesting(dnase is very expensive), I would try the salien first. But as for the way your doctor is acting it seems unprofessional to me as well. You may want to find another doctor. About your financial problems have you looked into getting medicare. I think there are ways you could get on it even if you work but i'm not sure. Anyway, it's worth looking at

 

[johannaleigh]

Welcome and sorry for the trouble with your doctor. The issue with us being treated at childrens hospitals and then going to adult doctors is that even though we are adults, we still need to be educated about cf and the doctors should act like doctors. The doctor is the one who does test and looks at the results and makes judgements about what medicine helps what problem and then comes in the room and says " the test show you have an infection and I would suggest some antibiotics to clear it up" and then awnsers questions and leaves the decision up to you. They may ask you whats been going or why did you come to the doctor, but then they should know what to do. Patients don't have to come up with thier own treatments. Mabey in your case the doctor dosen't think you need the medicine you are requesting(dnase is very expensive), I would try the salien first. But as for the way your doctor is acting it seems unprofessional to me as well. You may want to find another doctor. About your financial problems have you looked into getting medicare. I think there are ways you could get on it even if you work but i'm not sure. Anyway, it's worth looking at