Bad doctors appt, need some advice

J

jenhum

New member
So I think I caught something this weekend, these last few days I've felt like a truck ran over me, and I started coughing a lot and have been extremely out of breath. So I called today and went in to see the doc. He decided to put me on 2 weeks of Meropenem and Tobra, my usual. I immediately said I wasn't comfortable using Tobra b/c of it not being safe during pregnancy. He said that they use it all the time for pregnant cfers, and denied that there were risks to the hearing for the fetus.

I am so confused as to what to do. I didn't feel like I could argue too much, as my only argument is "well that's not what I've read on the internet," which doesn't sound like a great argument seeing as he's the doctor and I'm not. He did say that they like to see the peaks (or is it trough? I can never remember) lower in pregnant women, so I am only doing about 2/3 of my normal dose.

I don't start until tomorrow, and I plan on contacting my nurse practitioner and seeing if she can contact my usual doctor, who is on maternity leave, to get her opinion. I'm almost positive she mentioned not using Tobra before I got pregnant. I am just really confused and upset b/c what he told me today contradicts everything I've read, but at the same time, this is one of the best CF clinics in the country, so part of me thinks I should trust them. I also plan on calling my OB in the morning, but I'm not sure they'll know any more than my clinic.

WWYD? Also, do you have any articles/reliable sources that you can direct me to in case I need to back up my suspicions of using Tobra?

I have spent all afternoon in tears over this. I would use it as a last resort, but I don't think it's come to that yet and I want to explore any other avenue I can before I put my baby at risk.
 
J

jenhum

New member
So I think I caught something this weekend, these last few days I've felt like a truck ran over me, and I started coughing a lot and have been extremely out of breath. So I called today and went in to see the doc. He decided to put me on 2 weeks of Meropenem and Tobra, my usual. I immediately said I wasn't comfortable using Tobra b/c of it not being safe during pregnancy. He said that they use it all the time for pregnant cfers, and denied that there were risks to the hearing for the fetus.

I am so confused as to what to do. I didn't feel like I could argue too much, as my only argument is "well that's not what I've read on the internet," which doesn't sound like a great argument seeing as he's the doctor and I'm not. He did say that they like to see the peaks (or is it trough? I can never remember) lower in pregnant women, so I am only doing about 2/3 of my normal dose.

I don't start until tomorrow, and I plan on contacting my nurse practitioner and seeing if she can contact my usual doctor, who is on maternity leave, to get her opinion. I'm almost positive she mentioned not using Tobra before I got pregnant. I am just really confused and upset b/c what he told me today contradicts everything I've read, but at the same time, this is one of the best CF clinics in the country, so part of me thinks I should trust them. I also plan on calling my OB in the morning, but I'm not sure they'll know any more than my clinic.

WWYD? Also, do you have any articles/reliable sources that you can direct me to in case I need to back up my suspicions of using Tobra?

I have spent all afternoon in tears over this. I would use it as a last resort, but I don't think it's come to that yet and I want to explore any other avenue I can before I put my baby at risk.
 
J

jenhum

New member
So I think I caught something this weekend, these last few days I've felt like a truck ran over me, and I started coughing a lot and have been extremely out of breath. So I called today and went in to see the doc. He decided to put me on 2 weeks of Meropenem and Tobra, my usual. I immediately said I wasn't comfortable using Tobra b/c of it not being safe during pregnancy. He said that they use it all the time for pregnant cfers, and denied that there were risks to the hearing for the fetus.

I am so confused as to what to do. I didn't feel like I could argue too much, as my only argument is "well that's not what I've read on the internet," which doesn't sound like a great argument seeing as he's the doctor and I'm not. He did say that they like to see the peaks (or is it trough? I can never remember) lower in pregnant women, so I am only doing about 2/3 of my normal dose.

I don't start until tomorrow, and I plan on contacting my nurse practitioner and seeing if she can contact my usual doctor, who is on maternity leave, to get her opinion. I'm almost positive she mentioned not using Tobra before I got pregnant. I am just really confused and upset b/c what he told me today contradicts everything I've read, but at the same time, this is one of the best CF clinics in the country, so part of me thinks I should trust them. I also plan on calling my OB in the morning, but I'm not sure they'll know any more than my clinic.

WWYD? Also, do you have any articles/reliable sources that you can direct me to in case I need to back up my suspicions of using Tobra?

I have spent all afternoon in tears over this. I would use it as a last resort, but I don't think it's come to that yet and I want to explore any other avenue I can before I put my baby at risk.
 
J

jenhum

New member
So I think I caught something this weekend, these last few days I've felt like a truck ran over me, and I started coughing a lot and have been extremely out of breath. So I called today and went in to see the doc. He decided to put me on 2 weeks of Meropenem and Tobra, my usual. I immediately said I wasn't comfortable using Tobra b/c of it not being safe during pregnancy. He said that they use it all the time for pregnant cfers, and denied that there were risks to the hearing for the fetus.

I am so confused as to what to do. I didn't feel like I could argue too much, as my only argument is "well that's not what I've read on the internet," which doesn't sound like a great argument seeing as he's the doctor and I'm not. He did say that they like to see the peaks (or is it trough? I can never remember) lower in pregnant women, so I am only doing about 2/3 of my normal dose.

I don't start until tomorrow, and I plan on contacting my nurse practitioner and seeing if she can contact my usual doctor, who is on maternity leave, to get her opinion. I'm almost positive she mentioned not using Tobra before I got pregnant. I am just really confused and upset b/c what he told me today contradicts everything I've read, but at the same time, this is one of the best CF clinics in the country, so part of me thinks I should trust them. I also plan on calling my OB in the morning, but I'm not sure they'll know any more than my clinic.

WWYD? Also, do you have any articles/reliable sources that you can direct me to in case I need to back up my suspicions of using Tobra?

I have spent all afternoon in tears over this. I would use it as a last resort, but I don't think it's come to that yet and I want to explore any other avenue I can before I put my baby at risk.
 
J

jenhum

New member
So I think I caught something this weekend, these last few days I've felt like a truck ran over me, and I started coughing a lot and have been extremely out of breath. So I called today and went in to see the doc. He decided to put me on 2 weeks of Meropenem and Tobra, my usual. I immediately said I wasn't comfortable using Tobra b/c of it not being safe during pregnancy. He said that they use it all the time for pregnant cfers, and denied that there were risks to the hearing for the fetus.

I am so confused as to what to do. I didn't feel like I could argue too much, as my only argument is "well that's not what I've read on the internet," which doesn't sound like a great argument seeing as he's the doctor and I'm not. He did say that they like to see the peaks (or is it trough? I can never remember) lower in pregnant women, so I am only doing about 2/3 of my normal dose.

I don't start until tomorrow, and I plan on contacting my nurse practitioner and seeing if she can contact my usual doctor, who is on maternity leave, to get her opinion. I'm almost positive she mentioned not using Tobra before I got pregnant. I am just really confused and upset b/c what he told me today contradicts everything I've read, but at the same time, this is one of the best CF clinics in the country, so part of me thinks I should trust them. I also plan on calling my OB in the morning, but I'm not sure they'll know any more than my clinic.

WWYD? Also, do you have any articles/reliable sources that you can direct me to in case I need to back up my suspicions of using Tobra?

I have spent all afternoon in tears over this. I would use it as a last resort, but I don't think it's come to that yet and I want to explore any other avenue I can before I put my baby at risk.
 
M

MamatoAlexa

New member
(((HUGS)))

I know it would be REALLY hard for me to do but I would ask for other options and tell my Dr. that I am not comfortable taking the Tobra. Yes, they are the experts but in the end it is our health and sometimes we have to stand up for what we feel is right and best for us. It is not as if you are denying all treatment, you just want another option.
 
M

MamatoAlexa

New member
(((HUGS)))

I know it would be REALLY hard for me to do but I would ask for other options and tell my Dr. that I am not comfortable taking the Tobra. Yes, they are the experts but in the end it is our health and sometimes we have to stand up for what we feel is right and best for us. It is not as if you are denying all treatment, you just want another option.
 
M

MamatoAlexa

New member
(((HUGS)))

I know it would be REALLY hard for me to do but I would ask for other options and tell my Dr. that I am not comfortable taking the Tobra. Yes, they are the experts but in the end it is our health and sometimes we have to stand up for what we feel is right and best for us. It is not as if you are denying all treatment, you just want another option.
 
M

MamatoAlexa

New member
(((HUGS)))

I know it would be REALLY hard for me to do but I would ask for other options and tell my Dr. that I am not comfortable taking the Tobra. Yes, they are the experts but in the end it is our health and sometimes we have to stand up for what we feel is right and best for us. It is not as if you are denying all treatment, you just want another option.
 
M

MamatoAlexa

New member
(((HUGS)))

I know it would be REALLY hard for me to do but I would ask for other options and tell my Dr. that I am not comfortable taking the Tobra. Yes, they are the experts but in the end it is our health and sometimes we have to stand up for what we feel is right and best for us. It is not as if you are denying all treatment, you just want another option.
 
S

semperfiohana

Guest
hey jen i completely understand your frustration. there is a chance for hearing loss with the baby. he can't tell you that there isn't cause there is. i am actually on iv's. i was on iv's at the beginning of jan because my numbers fell and they wanted to get them back up. i was on tobra and fortaz and they watched my peak and trough levels and cbc the entire time i was on them. they drew labs twice a week. anyways a week and a half after i got off iv's i caught a freaking cold that went from my head to my chest and my numbers fell again, not as bad as they were before, but we decided to do another round of iv's. i hate doing the iv's with a risk, but i feel that the benefits out weigh the risk. i need to make sure that i am healthy enough to take care of our son once he is born. they are drawing labs twice a week again to make sure that i'm not getting too big of a dose. and tobra is one of the drugs that i'm senstive to. they wanted me to inhale tobi, but it gives me really bad headaches, so i'm not left with many choices. you kinda have to look at the pros and cons more or less to decide. good luck to you though and hope you feel better!!
 
S

semperfiohana

Guest
hey jen i completely understand your frustration. there is a chance for hearing loss with the baby. he can't tell you that there isn't cause there is. i am actually on iv's. i was on iv's at the beginning of jan because my numbers fell and they wanted to get them back up. i was on tobra and fortaz and they watched my peak and trough levels and cbc the entire time i was on them. they drew labs twice a week. anyways a week and a half after i got off iv's i caught a freaking cold that went from my head to my chest and my numbers fell again, not as bad as they were before, but we decided to do another round of iv's. i hate doing the iv's with a risk, but i feel that the benefits out weigh the risk. i need to make sure that i am healthy enough to take care of our son once he is born. they are drawing labs twice a week again to make sure that i'm not getting too big of a dose. and tobra is one of the drugs that i'm senstive to. they wanted me to inhale tobi, but it gives me really bad headaches, so i'm not left with many choices. you kinda have to look at the pros and cons more or less to decide. good luck to you though and hope you feel better!!
 
S

semperfiohana

Guest
hey jen i completely understand your frustration. there is a chance for hearing loss with the baby. he can't tell you that there isn't cause there is. i am actually on iv's. i was on iv's at the beginning of jan because my numbers fell and they wanted to get them back up. i was on tobra and fortaz and they watched my peak and trough levels and cbc the entire time i was on them. they drew labs twice a week. anyways a week and a half after i got off iv's i caught a freaking cold that went from my head to my chest and my numbers fell again, not as bad as they were before, but we decided to do another round of iv's. i hate doing the iv's with a risk, but i feel that the benefits out weigh the risk. i need to make sure that i am healthy enough to take care of our son once he is born. they are drawing labs twice a week again to make sure that i'm not getting too big of a dose. and tobra is one of the drugs that i'm senstive to. they wanted me to inhale tobi, but it gives me really bad headaches, so i'm not left with many choices. you kinda have to look at the pros and cons more or less to decide. good luck to you though and hope you feel better!!
 
S

semperfiohana

Guest
hey jen i completely understand your frustration. there is a chance for hearing loss with the baby. he can't tell you that there isn't cause there is. i am actually on iv's. i was on iv's at the beginning of jan because my numbers fell and they wanted to get them back up. i was on tobra and fortaz and they watched my peak and trough levels and cbc the entire time i was on them. they drew labs twice a week. anyways a week and a half after i got off iv's i caught a freaking cold that went from my head to my chest and my numbers fell again, not as bad as they were before, but we decided to do another round of iv's. i hate doing the iv's with a risk, but i feel that the benefits out weigh the risk. i need to make sure that i am healthy enough to take care of our son once he is born. they are drawing labs twice a week again to make sure that i'm not getting too big of a dose. and tobra is one of the drugs that i'm senstive to. they wanted me to inhale tobi, but it gives me really bad headaches, so i'm not left with many choices. you kinda have to look at the pros and cons more or less to decide. good luck to you though and hope you feel better!!
 
S

semperfiohana

Guest
hey jen i completely understand your frustration. there is a chance for hearing loss with the baby. he can't tell you that there isn't cause there is. i am actually on iv's. i was on iv's at the beginning of jan because my numbers fell and they wanted to get them back up. i was on tobra and fortaz and they watched my peak and trough levels and cbc the entire time i was on them. they drew labs twice a week. anyways a week and a half after i got off iv's i caught a freaking cold that went from my head to my chest and my numbers fell again, not as bad as they were before, but we decided to do another round of iv's. i hate doing the iv's with a risk, but i feel that the benefits out weigh the risk. i need to make sure that i am healthy enough to take care of our son once he is born. they are drawing labs twice a week again to make sure that i'm not getting too big of a dose. and tobra is one of the drugs that i'm senstive to. they wanted me to inhale tobi, but it gives me really bad headaches, so i'm not left with many choices. you kinda have to look at the pros and cons more or less to decide. good luck to you though and hope you feel better!!
 
K

Keepercjr

Guest
Jen. I agree with Anne. It can be hard to stand up to our doctors but sometimes it has to be done. I'm dreading the day that happens w/ mine because she can be a complete B**** but if you aren't comfortable with Tobra (I'm not for myself during pregnancy) then just say you aren't going to do it and would like an alternative. It is your choice to make as are all the decisions about your health since you are an adult. You are allowed to disagree with their advice, it is your right to do so. Just because they "use it all the time in pregnant cfers" doesn't mean it is the right decision for YOU. There are lots of drugs out there - ask to be put on something else and if it doesn't work then you will put more thought into doing Tobra. Maybe TOBI as an alternative for now?

I'm not at home at the moment (In the SF bay area awaiting my clinic visit tomorrow) or I would spend a little time looking up some articles for you. Just do some google research on tobra and pregnancy and I'm sure articles will pop up.


Good luck. I don't envy your position right now.
 
K

Keepercjr

Guest
Jen. I agree with Anne. It can be hard to stand up to our doctors but sometimes it has to be done. I'm dreading the day that happens w/ mine because she can be a complete B**** but if you aren't comfortable with Tobra (I'm not for myself during pregnancy) then just say you aren't going to do it and would like an alternative. It is your choice to make as are all the decisions about your health since you are an adult. You are allowed to disagree with their advice, it is your right to do so. Just because they "use it all the time in pregnant cfers" doesn't mean it is the right decision for YOU. There are lots of drugs out there - ask to be put on something else and if it doesn't work then you will put more thought into doing Tobra. Maybe TOBI as an alternative for now?

I'm not at home at the moment (In the SF bay area awaiting my clinic visit tomorrow) or I would spend a little time looking up some articles for you. Just do some google research on tobra and pregnancy and I'm sure articles will pop up.


Good luck. I don't envy your position right now.
 
K

Keepercjr

Guest
Jen. I agree with Anne. It can be hard to stand up to our doctors but sometimes it has to be done. I'm dreading the day that happens w/ mine because she can be a complete B**** but if you aren't comfortable with Tobra (I'm not for myself during pregnancy) then just say you aren't going to do it and would like an alternative. It is your choice to make as are all the decisions about your health since you are an adult. You are allowed to disagree with their advice, it is your right to do so. Just because they "use it all the time in pregnant cfers" doesn't mean it is the right decision for YOU. There are lots of drugs out there - ask to be put on something else and if it doesn't work then you will put more thought into doing Tobra. Maybe TOBI as an alternative for now?

I'm not at home at the moment (In the SF bay area awaiting my clinic visit tomorrow) or I would spend a little time looking up some articles for you. Just do some google research on tobra and pregnancy and I'm sure articles will pop up.


Good luck. I don't envy your position right now.
 
K

Keepercjr

Guest
Jen. I agree with Anne. It can be hard to stand up to our doctors but sometimes it has to be done. I'm dreading the day that happens w/ mine because she can be a complete B**** but if you aren't comfortable with Tobra (I'm not for myself during pregnancy) then just say you aren't going to do it and would like an alternative. It is your choice to make as are all the decisions about your health since you are an adult. You are allowed to disagree with their advice, it is your right to do so. Just because they "use it all the time in pregnant cfers" doesn't mean it is the right decision for YOU. There are lots of drugs out there - ask to be put on something else and if it doesn't work then you will put more thought into doing Tobra. Maybe TOBI as an alternative for now?

I'm not at home at the moment (In the SF bay area awaiting my clinic visit tomorrow) or I would spend a little time looking up some articles for you. Just do some google research on tobra and pregnancy and I'm sure articles will pop up.


Good luck. I don't envy your position right now.
 
K

Keepercjr

Guest
Jen. I agree with Anne. It can be hard to stand up to our doctors but sometimes it has to be done. I'm dreading the day that happens w/ mine because she can be a complete B**** but if you aren't comfortable with Tobra (I'm not for myself during pregnancy) then just say you aren't going to do it and would like an alternative. It is your choice to make as are all the decisions about your health since you are an adult. You are allowed to disagree with their advice, it is your right to do so. Just because they "use it all the time in pregnant cfers" doesn't mean it is the right decision for YOU. There are lots of drugs out there - ask to be put on something else and if it doesn't work then you will put more thought into doing Tobra. Maybe TOBI as an alternative for now?

I'm not at home at the moment (In the SF bay area awaiting my clinic visit tomorrow) or I would spend a little time looking up some articles for you. Just do some google research on tobra and pregnancy and I'm sure articles will pop up.


Good luck. I don't envy your position right now.
 
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