What is the point of the CF nurse?

[pjspiegle]

I have had similiar frustrations. We have more than one nurse at our CF clinic so I was able to find 2 nurses that I really like and trust to call when needed and I specifically ask for them and if they are out that day, I will wait until they are back unless it is emergent.

I also was given the emails of both his primary pulmonary doc and the 2 nurses that I like so if the nurse is out of the office, I often email his doctor direct and this allows me to talk to the person I really want to in the first place but not worry that I am interrupting him because he can respond when it is conveniant to him, which is usually within an hour or so and always within 24 hours. If I call and I am not comfortable with what any of the nurses have told me, I send him an email directly. Often times, I will send him an email and CC it to the nurse so that she knows that he knows what my questions are and are aware of what is going on. It is amazing at how differently she responds when she knows that I have sent the same letter to him or that I will send him an email questioning what she is telling me if I think I am getting BS.
I don't know if this is a possiblity or not, but I would definetly ask him if he has an email that you could send questions to from time to time and then he can respond at his leisure and if the nurse has one you would CC it to her so that if you need an answer right away and he isn't able to respond she can. You will be amazed at the difference in her responses to you knowing that he has seen the email as well.
I also have all of his phone numbers and pager number so I can go direct to him if I feel it necessary. My friend that has 2 CFers and sees the same dr. that we do, always calls him directly if A. she isn't in the mood to deal with the nurse, B. if she thinks the info the nurse gave isn't right, C. she isn't comfortable with the nurses answer, D. is out of town and doesn't have time to mess with the nurse. She also uses email but tends to call more than I do, I have, but usually choose the email route unless it is emergant or he has instructed me to call him at a specific time so that we can discuss the email sent.

I don't know if all docs have emails or not, but it has been a great solution for me and my friend.

Patty

 

[pjspiegle]

I have had similiar frustrations. We have more than one nurse at our CF clinic so I was able to find 2 nurses that I really like and trust to call when needed and I specifically ask for them and if they are out that day, I will wait until they are back unless it is emergent.

I also was given the emails of both his primary pulmonary doc and the 2 nurses that I like so if the nurse is out of the office, I often email his doctor direct and this allows me to talk to the person I really want to in the first place but not worry that I am interrupting him because he can respond when it is conveniant to him, which is usually within an hour or so and always within 24 hours. If I call and I am not comfortable with what any of the nurses have told me, I send him an email directly. Often times, I will send him an email and CC it to the nurse so that she knows that he knows what my questions are and are aware of what is going on. It is amazing at how differently she responds when she knows that I have sent the same letter to him or that I will send him an email questioning what she is telling me if I think I am getting BS.
I don't know if this is a possiblity or not, but I would definetly ask him if he has an email that you could send questions to from time to time and then he can respond at his leisure and if the nurse has one you would CC it to her so that if you need an answer right away and he isn't able to respond she can. You will be amazed at the difference in her responses to you knowing that he has seen the email as well.
I also have all of his phone numbers and pager number so I can go direct to him if I feel it necessary. My friend that has 2 CFers and sees the same dr. that we do, always calls him directly if A. she isn't in the mood to deal with the nurse, B. if she thinks the info the nurse gave isn't right, C. she isn't comfortable with the nurses answer, D. is out of town and doesn't have time to mess with the nurse. She also uses email but tends to call more than I do, I have, but usually choose the email route unless it is emergant or he has instructed me to call him at a specific time so that we can discuss the email sent.

I don't know if all docs have emails or not, but it has been a great solution for me and my friend.

Patty

 

[pjspiegle]

I have had similiar frustrations. We have more than one nurse at our CF clinic so I was able to find 2 nurses that I really like and trust to call when needed and I specifically ask for them and if they are out that day, I will wait until they are back unless it is emergent.

I also was given the emails of both his primary pulmonary doc and the 2 nurses that I like so if the nurse is out of the office, I often email his doctor direct and this allows me to talk to the person I really want to in the first place but not worry that I am interrupting him because he can respond when it is conveniant to him, which is usually within an hour or so and always within 24 hours. If I call and I am not comfortable with what any of the nurses have told me, I send him an email directly. Often times, I will send him an email and CC it to the nurse so that she knows that he knows what my questions are and are aware of what is going on. It is amazing at how differently she responds when she knows that I have sent the same letter to him or that I will send him an email questioning what she is telling me if I think I am getting BS.
I don't know if this is a possiblity or not, but I would definetly ask him if he has an email that you could send questions to from time to time and then he can respond at his leisure and if the nurse has one you would CC it to her so that if you need an answer right away and he isn't able to respond she can. You will be amazed at the difference in her responses to you knowing that he has seen the email as well.
I also have all of his phone numbers and pager number so I can go direct to him if I feel it necessary. My friend that has 2 CFers and sees the same dr. that we do, always calls him directly if A. she isn't in the mood to deal with the nurse, B. if she thinks the info the nurse gave isn't right, C. she isn't comfortable with the nurses answer, D. is out of town and doesn't have time to mess with the nurse. She also uses email but tends to call more than I do, I have, but usually choose the email route unless it is emergant or he has instructed me to call him at a specific time so that we can discuss the email sent.

I don't know if all docs have emails or not, but it has been a great solution for me and my friend.

Patty

 

[pjspiegle]

I have had similiar frustrations. We have more than one nurse at our CF clinic so I was able to find 2 nurses that I really like and trust to call when needed and I specifically ask for them and if they are out that day, I will wait until they are back unless it is emergent.

I also was given the emails of both his primary pulmonary doc and the 2 nurses that I like so if the nurse is out of the office, I often email his doctor direct and this allows me to talk to the person I really want to in the first place but not worry that I am interrupting him because he can respond when it is conveniant to him, which is usually within an hour or so and always within 24 hours. If I call and I am not comfortable with what any of the nurses have told me, I send him an email directly. Often times, I will send him an email and CC it to the nurse so that she knows that he knows what my questions are and are aware of what is going on. It is amazing at how differently she responds when she knows that I have sent the same letter to him or that I will send him an email questioning what she is telling me if I think I am getting BS.
I don't know if this is a possiblity or not, but I would definetly ask him if he has an email that you could send questions to from time to time and then he can respond at his leisure and if the nurse has one you would CC it to her so that if you need an answer right away and he isn't able to respond she can. You will be amazed at the difference in her responses to you knowing that he has seen the email as well.
I also have all of his phone numbers and pager number so I can go direct to him if I feel it necessary. My friend that has 2 CFers and sees the same dr. that we do, always calls him directly if A. she isn't in the mood to deal with the nurse, B. if she thinks the info the nurse gave isn't right, C. she isn't comfortable with the nurses answer, D. is out of town and doesn't have time to mess with the nurse. She also uses email but tends to call more than I do, I have, but usually choose the email route unless it is emergant or he has instructed me to call him at a specific time so that we can discuss the email sent.

I don't know if all docs have emails or not, but it has been a great solution for me and my friend.

Patty

 

[pjspiegle]

I have had similiar frustrations. We have more than one nurse at our CF clinic so I was able to find 2 nurses that I really like and trust to call when needed and I specifically ask for them and if they are out that day, I will wait until they are back unless it is emergent.
<br />
<br />I also was given the emails of both his primary pulmonary doc and the 2 nurses that I like so if the nurse is out of the office, I often email his doctor direct and this allows me to talk to the person I really want to in the first place but not worry that I am interrupting him because he can respond when it is conveniant to him, which is usually within an hour or so and always within 24 hours. If I call and I am not comfortable with what any of the nurses have told me, I send him an email directly. Often times, I will send him an email and CC it to the nurse so that she knows that he knows what my questions are and are aware of what is going on. It is amazing at how differently she responds when she knows that I have sent the same letter to him or that I will send him an email questioning what she is telling me if I think I am getting BS.
<br />I don't know if this is a possiblity or not, but I would definetly ask him if he has an email that you could send questions to from time to time and then he can respond at his leisure and if the nurse has one you would CC it to her so that if you need an answer right away and he isn't able to respond she can. You will be amazed at the difference in her responses to you knowing that he has seen the email as well.
<br />I also have all of his phone numbers and pager number so I can go direct to him if I feel it necessary. My friend that has 2 CFers and sees the same dr. that we do, always calls him directly if A. she isn't in the mood to deal with the nurse, B. if she thinks the info the nurse gave isn't right, C. she isn't comfortable with the nurses answer, D. is out of town and doesn't have time to mess with the nurse. She also uses email but tends to call more than I do, I have, but usually choose the email route unless it is emergant or he has instructed me to call him at a specific time so that we can discuss the email sent.
<br />
<br />I don't know if all docs have emails or not, but it has been a great solution for me and my friend.
<br />
<br />Patty

 

[pjspiegle]

Oh, I should have mentioned that when he does respond to the email, he sends instructions to me and CC's it to the nurses but they can't give me any BS because he sends me an exact copy of the orders that he sends to them as well so I know what he wants us to do exactly. That has saved me a lot of frustration because I remind them that he sent the instructions to me as well and offer to resend a copy if they had deleted the email by mistake.

 

[pjspiegle]

Oh, I should have mentioned that when he does respond to the email, he sends instructions to me and CC's it to the nurses but they can't give me any BS because he sends me an exact copy of the orders that he sends to them as well so I know what he wants us to do exactly. That has saved me a lot of frustration because I remind them that he sent the instructions to me as well and offer to resend a copy if they had deleted the email by mistake.

 

[pjspiegle]

Oh, I should have mentioned that when he does respond to the email, he sends instructions to me and CC's it to the nurses but they can't give me any BS because he sends me an exact copy of the orders that he sends to them as well so I know what he wants us to do exactly. That has saved me a lot of frustration because I remind them that he sent the instructions to me as well and offer to resend a copy if they had deleted the email by mistake.

 

[pjspiegle]

Oh, I should have mentioned that when he does respond to the email, he sends instructions to me and CC's it to the nurses but they can't give me any BS because he sends me an exact copy of the orders that he sends to them as well so I know what he wants us to do exactly. That has saved me a lot of frustration because I remind them that he sent the instructions to me as well and offer to resend a copy if they had deleted the email by mistake.

 

[pjspiegle]

Oh, I should have mentioned that when he does respond to the email, he sends instructions to me and CC's it to the nurses but they can't give me any BS because he sends me an exact copy of the orders that he sends to them as well so I know what he wants us to do exactly. That has saved me a lot of frustration because I remind them that he sent the instructions to me as well and offer to resend a copy if they had deleted the email by mistake.

 

[sdelorenzo]

I had to change my daughter's cf dr because his nurse was very much like you described. She had a difficult time getting back to me, so I finally switched drs and I have been much happier with his nurse and this new dr.

Now I just wish they used e-mail!!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

I had to change my daughter's cf dr because his nurse was very much like you described. She had a difficult time getting back to me, so I finally switched drs and I have been much happier with his nurse and this new dr.

Now I just wish they used e-mail!!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

I had to change my daughter's cf dr because his nurse was very much like you described. She had a difficult time getting back to me, so I finally switched drs and I have been much happier with his nurse and this new dr.

Now I just wish they used e-mail!!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

I had to change my daughter's cf dr because his nurse was very much like you described. She had a difficult time getting back to me, so I finally switched drs and I have been much happier with his nurse and this new dr.

Now I just wish they used e-mail!!
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

I had to change my daughter's cf dr because his nurse was very much like you described. She had a difficult time getting back to me, so I finally switched drs and I have been much happier with his nurse and this new dr.
<br />
<br />Now I just wish they used e-mail!!
<br />Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[TestifyToLove]

Wow, I would do SO much better with a direct email to the doctor option, even an email to the nurse. I have 7 kids and getting them to be quiet to make phone calls can sometimes take an act of God. Email is so much easier for me most of the time.

The nutritionalist called me back right away. She immediately understood my concerns and said it HAD to be a mistake, either with what the resident wrote or how the pharmacy interpretted it. She was going straight to the doctor to get it straightened out.

Of course, the doctor called back and didn't leave a callback number while I was on the phone dealing with the school system. So, I'm back to waiting to hear from someone *again*.

What is really frustrating is that there are 2 CF clinics in our city, they are basically 2 branches of the same clinic so no competition. Normally younger kids go to the other CF clinic and my original relationship was with the AMAZING NP at the other clinic. Because of his GI and liver complications, she requested we take M to this clinic as she felt the stronger doctors on those areas worked at this clinic. And, that is true. But, I judge these nurses by the NP at the sister clinic...and I find them sadly lacking across the board.

 

[TestifyToLove]

Wow, I would do SO much better with a direct email to the doctor option, even an email to the nurse. I have 7 kids and getting them to be quiet to make phone calls can sometimes take an act of God. Email is so much easier for me most of the time.

The nutritionalist called me back right away. She immediately understood my concerns and said it HAD to be a mistake, either with what the resident wrote or how the pharmacy interpretted it. She was going straight to the doctor to get it straightened out.

Of course, the doctor called back and didn't leave a callback number while I was on the phone dealing with the school system. So, I'm back to waiting to hear from someone *again*.

What is really frustrating is that there are 2 CF clinics in our city, they are basically 2 branches of the same clinic so no competition. Normally younger kids go to the other CF clinic and my original relationship was with the AMAZING NP at the other clinic. Because of his GI and liver complications, she requested we take M to this clinic as she felt the stronger doctors on those areas worked at this clinic. And, that is true. But, I judge these nurses by the NP at the sister clinic...and I find them sadly lacking across the board.

 

[TestifyToLove]

Wow, I would do SO much better with a direct email to the doctor option, even an email to the nurse. I have 7 kids and getting them to be quiet to make phone calls can sometimes take an act of God. Email is so much easier for me most of the time.

The nutritionalist called me back right away. She immediately understood my concerns and said it HAD to be a mistake, either with what the resident wrote or how the pharmacy interpretted it. She was going straight to the doctor to get it straightened out.

Of course, the doctor called back and didn't leave a callback number while I was on the phone dealing with the school system. So, I'm back to waiting to hear from someone *again*.

What is really frustrating is that there are 2 CF clinics in our city, they are basically 2 branches of the same clinic so no competition. Normally younger kids go to the other CF clinic and my original relationship was with the AMAZING NP at the other clinic. Because of his GI and liver complications, she requested we take M to this clinic as she felt the stronger doctors on those areas worked at this clinic. And, that is true. But, I judge these nurses by the NP at the sister clinic...and I find them sadly lacking across the board.

 

[TestifyToLove]

Wow, I would do SO much better with a direct email to the doctor option, even an email to the nurse. I have 7 kids and getting them to be quiet to make phone calls can sometimes take an act of God. Email is so much easier for me most of the time.

The nutritionalist called me back right away. She immediately understood my concerns and said it HAD to be a mistake, either with what the resident wrote or how the pharmacy interpretted it. She was going straight to the doctor to get it straightened out.

Of course, the doctor called back and didn't leave a callback number while I was on the phone dealing with the school system. So, I'm back to waiting to hear from someone *again*.

What is really frustrating is that there are 2 CF clinics in our city, they are basically 2 branches of the same clinic so no competition. Normally younger kids go to the other CF clinic and my original relationship was with the AMAZING NP at the other clinic. Because of his GI and liver complications, she requested we take M to this clinic as she felt the stronger doctors on those areas worked at this clinic. And, that is true. But, I judge these nurses by the NP at the sister clinic...and I find them sadly lacking across the board.

 

[TestifyToLove]

Wow, I would do SO much better with a direct email to the doctor option, even an email to the nurse. I have 7 kids and getting them to be quiet to make phone calls can sometimes take an act of God. Email is so much easier for me most of the time.
<br />
<br />The nutritionalist called me back right away. She immediately understood my concerns and said it HAD to be a mistake, either with what the resident wrote or how the pharmacy interpretted it. She was going straight to the doctor to get it straightened out.
<br />
<br />Of course, the doctor called back and didn't leave a callback number while I was on the phone dealing with the school system. So, I'm back to waiting to hear from someone *again*.
<br />
<br />What is really frustrating is that there are 2 CF clinics in our city, they are basically 2 branches of the same clinic so no competition. Normally younger kids go to the other CF clinic and my original relationship was with the AMAZING NP at the other clinic. Because of his GI and liver complications, she requested we take M to this clinic as she felt the stronger doctors on those areas worked at this clinic. And, that is true. But, I judge these nurses by the NP at the sister clinic...and I find them sadly lacking across the board.