Ohhh how we torture ourselves<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am sooo sorry that you are feeling a bit defeated. I can tell you my most recent experience. I started IV's on January 23rd with a course that my body was sensitive to according to culture. I went two weeks with no FEV1 changes and the Friday after my 2nd clinic visit I coughed up a glob with blood, sorry for being yucky. That was very discouraging to me. It was on that day that we tweaked some things and added an oral. About 4 days later my FEV1 spiked and has been improving since then. I should have had better coverage in the beginning but I got on the right course and things improved after that. Even after getting on the right course I continued to produce because I think stuff was coming that wouldn't budge before. My FEV1 has gone up 10% after tweaking the routine. I will say it took my persistence to insist that I needed better coverage. I was not satisfied with how I was improving and insisted on triple coverage for my PA. As great as my doc is, I think he would have pulled the PICC line at 3 weeks and been satisfied with a slight loss in FEV1. It was me being a very pro-active patient that got me back. Unfortunately, we have to be our own docs sometimes and insist on things. Our clinics are sometimes too busy to care. I would make that call on Monday with confidence that you are making an important call and make sure you are getting dual or triple coverage of your bugs if possible. In the meantime, I would throw on a favorite movie, make some hot tea, and enjoy what is left of the weekend<img src="i/expressions/face-icon-small-smile.gif" border="0"> Much love and PM me if you have any other questions.
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Frustrated, scared, alone....
- Thread starter ladybug
- Start date
Ohhh how we torture ourselves<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am sooo sorry that you are feeling a bit defeated. I can tell you my most recent experience. I started IV's on January 23rd with a course that my body was sensitive to according to culture. I went two weeks with no FEV1 changes and the Friday after my 2nd clinic visit I coughed up a glob with blood, sorry for being yucky. That was very discouraging to me. It was on that day that we tweaked some things and added an oral. About 4 days later my FEV1 spiked and has been improving since then. I should have had better coverage in the beginning but I got on the right course and things improved after that. Even after getting on the right course I continued to produce because I think stuff was coming that wouldn't budge before. My FEV1 has gone up 10% after tweaking the routine. I will say it took my persistence to insist that I needed better coverage. I was not satisfied with how I was improving and insisted on triple coverage for my PA. As great as my doc is, I think he would have pulled the PICC line at 3 weeks and been satisfied with a slight loss in FEV1. It was me being a very pro-active patient that got me back. Unfortunately, we have to be our own docs sometimes and insist on things. Our clinics are sometimes too busy to care. I would make that call on Monday with confidence that you are making an important call and make sure you are getting dual or triple coverage of your bugs if possible. In the meantime, I would throw on a favorite movie, make some hot tea, and enjoy what is left of the weekend<img src="i/expressions/face-icon-small-smile.gif" border="0"> Much love and PM me if you have any other questions.
Ohhh how we torture ourselves<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am sooo sorry that you are feeling a bit defeated. I can tell you my most recent experience. I started IV's on January 23rd with a course that my body was sensitive to according to culture. I went two weeks with no FEV1 changes and the Friday after my 2nd clinic visit I coughed up a glob with blood, sorry for being yucky. That was very discouraging to me. It was on that day that we tweaked some things and added an oral. About 4 days later my FEV1 spiked and has been improving since then. I should have had better coverage in the beginning but I got on the right course and things improved after that. Even after getting on the right course I continued to produce because I think stuff was coming that wouldn't budge before. My FEV1 has gone up 10% after tweaking the routine. I will say it took my persistence to insist that I needed better coverage. I was not satisfied with how I was improving and insisted on triple coverage for my PA. As great as my doc is, I think he would have pulled the PICC line at 3 weeks and been satisfied with a slight loss in FEV1. It was me being a very pro-active patient that got me back. Unfortunately, we have to be our own docs sometimes and insist on things. Our clinics are sometimes too busy to care. I would make that call on Monday with confidence that you are making an important call and make sure you are getting dual or triple coverage of your bugs if possible. In the meantime, I would throw on a favorite movie, make some hot tea, and enjoy what is left of the weekend<img src="i/expressions/face-icon-small-smile.gif" border="0"> Much love and PM me if you have any other questions.
Ohhh how we torture ourselves<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am sooo sorry that you are feeling a bit defeated. I can tell you my most recent experience. I started IV's on January 23rd with a course that my body was sensitive to according to culture. I went two weeks with no FEV1 changes and the Friday after my 2nd clinic visit I coughed up a glob with blood, sorry for being yucky. That was very discouraging to me. It was on that day that we tweaked some things and added an oral. About 4 days later my FEV1 spiked and has been improving since then. I should have had better coverage in the beginning but I got on the right course and things improved after that. Even after getting on the right course I continued to produce because I think stuff was coming that wouldn't budge before. My FEV1 has gone up 10% after tweaking the routine. I will say it took my persistence to insist that I needed better coverage. I was not satisfied with how I was improving and insisted on triple coverage for my PA. As great as my doc is, I think he would have pulled the PICC line at 3 weeks and been satisfied with a slight loss in FEV1. It was me being a very pro-active patient that got me back. Unfortunately, we have to be our own docs sometimes and insist on things. Our clinics are sometimes too busy to care. I would make that call on Monday with confidence that you are making an important call and make sure you are getting dual or triple coverage of your bugs if possible. In the meantime, I would throw on a favorite movie, make some hot tea, and enjoy what is left of the weekend<img src="i/expressions/face-icon-small-smile.gif" border="0"> Much love and PM me if you have any other questions.
Ohhh how we torture ourselves<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am sooo sorry that you are feeling a bit defeated. I can tell you my most recent experience. I started IV's on January 23rd with a course that my body was sensitive to according to culture. I went two weeks with no FEV1 changes and the Friday after my 2nd clinic visit I coughed up a glob with blood, sorry for being yucky. That was very discouraging to me. It was on that day that we tweaked some things and added an oral. About 4 days later my FEV1 spiked and has been improving since then. I should have had better coverage in the beginning but I got on the right course and things improved after that. Even after getting on the right course I continued to produce because I think stuff was coming that wouldn't budge before. My FEV1 has gone up 10% after tweaking the routine. I will say it took my persistence to insist that I needed better coverage. I was not satisfied with how I was improving and insisted on triple coverage for my PA. As great as my doc is, I think he would have pulled the PICC line at 3 weeks and been satisfied with a slight loss in FEV1. It was me being a very pro-active patient that got me back. Unfortunately, we have to be our own docs sometimes and insist on things. Our clinics are sometimes too busy to care. I would make that call on Monday with confidence that you are making an important call and make sure you are getting dual or triple coverage of your bugs if possible. In the meantime, I would throw on a favorite movie, make some hot tea, and enjoy what is left of the weekend<img src="i/expressions/face-icon-small-smile.gif" border="0"> Much love and PM me if you have any other questions.
T
TonyaH
Guest
Hi Sonia,
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
T
TonyaH
Guest
Hi Sonia,
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
T
TonyaH
Guest
Hi Sonia,
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
T
TonyaH
Guest
Hi Sonia,
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
Keep us posted on what the doctor says Monday. Good luck, Sonia!
T
TonyaH
Guest
Hi Sonia,
<br />
<br />I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
<br />
<br />I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
<br />
<br />Keep us posted on what the doctor says Monday. Good luck, Sonia!
<br />
<br />I have no words of wisdom. I just wanted to let you know that I'll be bummed with you. Sometimes I think we have to allow ourselves a day to sulk. I mean, honestly, you are entitled!!!!
<br />
<br />I hope today is a brighter day, and even if it doesn't bring improved health, maybe it will bring a new outlook on things and extra strength to fight whatever it is your lungs are fighting right now.
<br />
<br />Keep us posted on what the doctor says Monday. Good luck, Sonia!
Hey Sonia, I am a member of the frustrated club.. I have been on oral Doxycylene and Inhaled Tobi since the day after Super bowl, oral Cipro was added last weekend (once a day) then upped to twice a day on tues..
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
Hey Sonia, I am a member of the frustrated club.. I have been on oral Doxycylene and Inhaled Tobi since the day after Super bowl, oral Cipro was added last weekend (once a day) then upped to twice a day on tues..
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
Hey Sonia, I am a member of the frustrated club.. I have been on oral Doxycylene and Inhaled Tobi since the day after Super bowl, oral Cipro was added last weekend (once a day) then upped to twice a day on tues..
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
Hey Sonia, I am a member of the frustrated club.. I have been on oral Doxycylene and Inhaled Tobi since the day after Super bowl, oral Cipro was added last weekend (once a day) then upped to twice a day on tues..
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
Hey Sonia, I am a member of the frustrated club.. I have been on oral Doxycylene and Inhaled Tobi since the day after Super bowl, oral Cipro was added last weekend (once a day) then upped to twice a day on tues..
<br />I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
<br />I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
<br />Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
<br />
<br />I honestly feel like i'm not getting better and feel like my body is taking this abuse for nothing.. and that eventually i will have to go for the big guns..
<br />I called my doc yesterday and complained about a pain on my side, asking if it could be my liver (cause they try to use meds that aren't bad for the kidneys for me due to renal failure) So she was like take a deep breath and (not exact words but something like this) You are making problems that don't exist.. Well w/ all the cr*p that we go through is it a wonder that we would do that? I'm sure she could be right, but this stuff gets scary and confusing for sure...
<br />Sorry if i'm venting on your post .. You got some good advice and please know that we are all in the same boat and are here for each other.. If you ever want to talk , please PM me.. <img src="i/expressions/heart.gif" border="0"> joni
<br />
Sonia,
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
Sonia,
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
Sonia,
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
Sonia,
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
Good luck.
Sonia,
<br />
<br />You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
<br />
<br />Good luck.
<br />
<br />
<br />
<br />You need to get on some different meds. Remember, knowing your "petrie dish" sensitivities is different than what actually happens in your body, and what you are experiencing is that the meds are not working! Call and have them put you on something else. How about what you were on last time that worked?
<br />
<br />Good luck.
<br />
<br />