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Need to vent
- Thread starter thelizardqueen
- Start date
Hi Liz,
You know your body, be persistent with them. I spent four years at your clinic and if I ever had to go back I would go kicking and screaming. I have moved out of province and am much happier with my new clinic. I have been at three different clinics across canada and it is surprising the difference in care at the different clinics. I am guilty of not being pushy enough and just trusting what the doctors say, looking back I wish I hadn't been. Liz I would go back, see the doc and tell him you want to talk about your health not world events. See if you can get his attention and push for the test you need to get the answers you need so you can be treated with the proper meds.
Good Luck
Charlene
33/cf
You know your body, be persistent with them. I spent four years at your clinic and if I ever had to go back I would go kicking and screaming. I have moved out of province and am much happier with my new clinic. I have been at three different clinics across canada and it is surprising the difference in care at the different clinics. I am guilty of not being pushy enough and just trusting what the doctors say, looking back I wish I hadn't been. Liz I would go back, see the doc and tell him you want to talk about your health not world events. See if you can get his attention and push for the test you need to get the answers you need so you can be treated with the proper meds.
Good Luck
Charlene
33/cf
Hi Liz,
You know your body, be persistent with them. I spent four years at your clinic and if I ever had to go back I would go kicking and screaming. I have moved out of province and am much happier with my new clinic. I have been at three different clinics across canada and it is surprising the difference in care at the different clinics. I am guilty of not being pushy enough and just trusting what the doctors say, looking back I wish I hadn't been. Liz I would go back, see the doc and tell him you want to talk about your health not world events. See if you can get his attention and push for the test you need to get the answers you need so you can be treated with the proper meds.
Good Luck
Charlene
33/cf
You know your body, be persistent with them. I spent four years at your clinic and if I ever had to go back I would go kicking and screaming. I have moved out of province and am much happier with my new clinic. I have been at three different clinics across canada and it is surprising the difference in care at the different clinics. I am guilty of not being pushy enough and just trusting what the doctors say, looking back I wish I hadn't been. Liz I would go back, see the doc and tell him you want to talk about your health not world events. See if you can get his attention and push for the test you need to get the answers you need so you can be treated with the proper meds.
Good Luck
Charlene
33/cf
Liz that sucks!! I would hate it if my doctors shrugged off my thoughts and concerns. That's not right. I think you should be able to demand they look into it further if you are that concerned. You are the patient, it is your body, your health. Not something anyone else should dismiss if it's a genuine concern. Furthermore, there's a posted sign on the wall regarding "Patient's Rights" whenever you're in the hospital that talks about all nurses and doctors having to listen to all of your concerns, they can't make you feel like a drug addict if you need pain medication, etc. It's all about the rights we have as patients. I would insist they listen to you. They don't have anything to loose but you do. It's your health, they have to listen to you. Seriously.
Isn't Aspergillus the same as Psuedomonas? If so, see below about how they talk about controlling it with Tobi. I know you've mentioned that you only take Tobi for a little while when you're sick. In the US, we're suppose to be on it all the time....30 days on/30 days off.
(This was from Sean's link in the Supplements' section):
Tobramycin
The primary treatment goal is to optimize lung health by controlling bacterial infection (P. aeruginosa) and mobilizing viscous secretions. The most successful anti-pseudomonal treatment has been tobramycin, which is a more effective aminoglycoside than gentamicin by approximately 50% in vitro. Aerosolized tobramycin has proven to be promising for the treatment of P. aeruginosa infections in more stable patients and does not appear to spawn organism resistance.46 Aerosol routes deliver more medication with less toxicity and provide greater lung access.47 Aerosol routes are also easier for patient and family because treatments can be taken at home in lieu of in-patient IV administration.
On a side note, I have an example of me knowing my body better than the doctor. Last Decmeber/Jan, I felt strange and all these odd feelings were going on in my gutt and I was tired and I got really worried. I couldn't really put my finger on it but I called my doctor and told him that I just wanted them to take some blood and make sure I was okay. I was suspicious of something, and in the back of my mind I wondered if I was having kidney failure. Sure enough I was, and the doctors would never have guessed that because it was a mild episode! We know our bodies very well as long as we listen!!
Isn't Aspergillus the same as Psuedomonas? If so, see below about how they talk about controlling it with Tobi. I know you've mentioned that you only take Tobi for a little while when you're sick. In the US, we're suppose to be on it all the time....30 days on/30 days off.
(This was from Sean's link in the Supplements' section):
Tobramycin
The primary treatment goal is to optimize lung health by controlling bacterial infection (P. aeruginosa) and mobilizing viscous secretions. The most successful anti-pseudomonal treatment has been tobramycin, which is a more effective aminoglycoside than gentamicin by approximately 50% in vitro. Aerosolized tobramycin has proven to be promising for the treatment of P. aeruginosa infections in more stable patients and does not appear to spawn organism resistance.46 Aerosol routes deliver more medication with less toxicity and provide greater lung access.47 Aerosol routes are also easier for patient and family because treatments can be taken at home in lieu of in-patient IV administration.
On a side note, I have an example of me knowing my body better than the doctor. Last Decmeber/Jan, I felt strange and all these odd feelings were going on in my gutt and I was tired and I got really worried. I couldn't really put my finger on it but I called my doctor and told him that I just wanted them to take some blood and make sure I was okay. I was suspicious of something, and in the back of my mind I wondered if I was having kidney failure. Sure enough I was, and the doctors would never have guessed that because it was a mild episode! We know our bodies very well as long as we listen!!
Liz that sucks!! I would hate it if my doctors shrugged off my thoughts and concerns. That's not right. I think you should be able to demand they look into it further if you are that concerned. You are the patient, it is your body, your health. Not something anyone else should dismiss if it's a genuine concern. Furthermore, there's a posted sign on the wall regarding "Patient's Rights" whenever you're in the hospital that talks about all nurses and doctors having to listen to all of your concerns, they can't make you feel like a drug addict if you need pain medication, etc. It's all about the rights we have as patients. I would insist they listen to you. They don't have anything to loose but you do. It's your health, they have to listen to you. Seriously.
Isn't Aspergillus the same as Psuedomonas? If so, see below about how they talk about controlling it with Tobi. I know you've mentioned that you only take Tobi for a little while when you're sick. In the US, we're suppose to be on it all the time....30 days on/30 days off.
(This was from Sean's link in the Supplements' section):
Tobramycin
The primary treatment goal is to optimize lung health by controlling bacterial infection (P. aeruginosa) and mobilizing viscous secretions. The most successful anti-pseudomonal treatment has been tobramycin, which is a more effective aminoglycoside than gentamicin by approximately 50% in vitro. Aerosolized tobramycin has proven to be promising for the treatment of P. aeruginosa infections in more stable patients and does not appear to spawn organism resistance.46 Aerosol routes deliver more medication with less toxicity and provide greater lung access.47 Aerosol routes are also easier for patient and family because treatments can be taken at home in lieu of in-patient IV administration.
On a side note, I have an example of me knowing my body better than the doctor. Last Decmeber/Jan, I felt strange and all these odd feelings were going on in my gutt and I was tired and I got really worried. I couldn't really put my finger on it but I called my doctor and told him that I just wanted them to take some blood and make sure I was okay. I was suspicious of something, and in the back of my mind I wondered if I was having kidney failure. Sure enough I was, and the doctors would never have guessed that because it was a mild episode! We know our bodies very well as long as we listen!!
Isn't Aspergillus the same as Psuedomonas? If so, see below about how they talk about controlling it with Tobi. I know you've mentioned that you only take Tobi for a little while when you're sick. In the US, we're suppose to be on it all the time....30 days on/30 days off.
(This was from Sean's link in the Supplements' section):
Tobramycin
The primary treatment goal is to optimize lung health by controlling bacterial infection (P. aeruginosa) and mobilizing viscous secretions. The most successful anti-pseudomonal treatment has been tobramycin, which is a more effective aminoglycoside than gentamicin by approximately 50% in vitro. Aerosolized tobramycin has proven to be promising for the treatment of P. aeruginosa infections in more stable patients and does not appear to spawn organism resistance.46 Aerosol routes deliver more medication with less toxicity and provide greater lung access.47 Aerosol routes are also easier for patient and family because treatments can be taken at home in lieu of in-patient IV administration.
On a side note, I have an example of me knowing my body better than the doctor. Last Decmeber/Jan, I felt strange and all these odd feelings were going on in my gutt and I was tired and I got really worried. I couldn't really put my finger on it but I called my doctor and told him that I just wanted them to take some blood and make sure I was okay. I was suspicious of something, and in the back of my mind I wondered if I was having kidney failure. Sure enough I was, and the doctors would never have guessed that because it was a mild episode! We know our bodies very well as long as we listen!!
thelizardqueen
New member
Amy - I am pushing, trust me. I called my nurse back and told her that I wanted to come in for another checkup. The soonest they can get me in is the 23 of March, so she told me she'd call back with a time. I'm definitly going to sit and talk to my doc about my concerns, instead of having my nurse be my go-between. I feel so strongly about this, that if he keeps saying no, I'm going to demand a test. Better to be safe then sorry I say. I would rather get tested and find nothing, then not get tested, and have it get worse. I've had my body for 24 years. I think I know it better then some doc. Call it a gut instinct.
SeanDavis - I have the oil of oregano. I was nebbing it before, and felt a lot better with it, but I stopped doing it because I got really sick with my infection, and it was a bit harsh on my lungs. I'm still looking for the water soluable stuff.
Anon - apparently I've been culturing aspergillus off and on for the past two years, but my nurse informed me that half of the patients they see culture it, so I shouldn't be worried. Just because half of the patients have it, doesn't mean that I can't have a reaction to it. If I look back at my health, I've had symptoms of it for 2 years now - cough that won't go away, coughing up dark plugs, feeling unwell, coughing up blood on the occasion. I never had these problems two years ago.
Charlene - I know that you were at my clinic for awhile. If you don't mind my asking - what are your throughts on Dr. Kepron and how he treats stuff? I find more often then not, I have to bring stuff to his attention. How did you deal with him when you had problems?
SeanDavis - I have the oil of oregano. I was nebbing it before, and felt a lot better with it, but I stopped doing it because I got really sick with my infection, and it was a bit harsh on my lungs. I'm still looking for the water soluable stuff.
Anon - apparently I've been culturing aspergillus off and on for the past two years, but my nurse informed me that half of the patients they see culture it, so I shouldn't be worried. Just because half of the patients have it, doesn't mean that I can't have a reaction to it. If I look back at my health, I've had symptoms of it for 2 years now - cough that won't go away, coughing up dark plugs, feeling unwell, coughing up blood on the occasion. I never had these problems two years ago.
Charlene - I know that you were at my clinic for awhile. If you don't mind my asking - what are your throughts on Dr. Kepron and how he treats stuff? I find more often then not, I have to bring stuff to his attention. How did you deal with him when you had problems?
thelizardqueen
New member
Amy - I am pushing, trust me. I called my nurse back and told her that I wanted to come in for another checkup. The soonest they can get me in is the 23 of March, so she told me she'd call back with a time. I'm definitly going to sit and talk to my doc about my concerns, instead of having my nurse be my go-between. I feel so strongly about this, that if he keeps saying no, I'm going to demand a test. Better to be safe then sorry I say. I would rather get tested and find nothing, then not get tested, and have it get worse. I've had my body for 24 years. I think I know it better then some doc. Call it a gut instinct.
SeanDavis - I have the oil of oregano. I was nebbing it before, and felt a lot better with it, but I stopped doing it because I got really sick with my infection, and it was a bit harsh on my lungs. I'm still looking for the water soluable stuff.
Anon - apparently I've been culturing aspergillus off and on for the past two years, but my nurse informed me that half of the patients they see culture it, so I shouldn't be worried. Just because half of the patients have it, doesn't mean that I can't have a reaction to it. If I look back at my health, I've had symptoms of it for 2 years now - cough that won't go away, coughing up dark plugs, feeling unwell, coughing up blood on the occasion. I never had these problems two years ago.
Charlene - I know that you were at my clinic for awhile. If you don't mind my asking - what are your throughts on Dr. Kepron and how he treats stuff? I find more often then not, I have to bring stuff to his attention. How did you deal with him when you had problems?
SeanDavis - I have the oil of oregano. I was nebbing it before, and felt a lot better with it, but I stopped doing it because I got really sick with my infection, and it was a bit harsh on my lungs. I'm still looking for the water soluable stuff.
Anon - apparently I've been culturing aspergillus off and on for the past two years, but my nurse informed me that half of the patients they see culture it, so I shouldn't be worried. Just because half of the patients have it, doesn't mean that I can't have a reaction to it. If I look back at my health, I've had symptoms of it for 2 years now - cough that won't go away, coughing up dark plugs, feeling unwell, coughing up blood on the occasion. I never had these problems two years ago.
Charlene - I know that you were at my clinic for awhile. If you don't mind my asking - what are your throughts on Dr. Kepron and how he treats stuff? I find more often then not, I have to bring stuff to his attention. How did you deal with him when you had problems?
thelizardqueen
New member
Kelly - my doc has me on inhaled Tobra 2 weeks on, 2 weeks off now. The Tobra seems to be working somewhat, but I don't think its doing a good enough job. I've been on it for 1.5 weeks now, and have't noticed much of a difference. If anything, I've got a bit of pain in my upper right lobe, and I'm still coughing stuff up. I'm not sure though is Tobra is used for treating aspergillus. I thought anti-inflamatory drugs are used to treat it? I could be wrong.
Sandy - I live in Manitoba, and go to the Health Science Centre in Winnipeg.
Sandy - I live in Manitoba, and go to the Health Science Centre in Winnipeg.
thelizardqueen
New member
Kelly - my doc has me on inhaled Tobra 2 weeks on, 2 weeks off now. The Tobra seems to be working somewhat, but I don't think its doing a good enough job. I've been on it for 1.5 weeks now, and have't noticed much of a difference. If anything, I've got a bit of pain in my upper right lobe, and I'm still coughing stuff up. I'm not sure though is Tobra is used for treating aspergillus. I thought anti-inflamatory drugs are used to treat it? I could be wrong.
Sandy - I live in Manitoba, and go to the Health Science Centre in Winnipeg.
Sandy - I live in Manitoba, and go to the Health Science Centre in Winnipeg.
nickandlivsmom
New member
Hi Liz
A few years back I had similiar symptoms as you- wheezing- coughing up blood - etc.
I was having a "reaction" to aspirigilis(sp-sorry!). My doc put me on prednisone and sporanox(anti fungul). I was on both meds for a while but they really helped. You can tell if you are having a reaction to the aspirgilis from a blood test. I just had one myself and everything was in normal range for that.
You deserve the right to be treated properly!!!!! Keep pushing for more tests! In this day and age there is no reason why you shouldn't be treated right. I feel bad for you, I feel your pain. It really stinks when DRs don't listen to you and think they know everything. You know your body and you know something isn't right!!! Keep on calling till you get answers <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope you feel better soon!-Carrie<img src="i/expressions/face-icon-small-happy.gif" border="0">
A few years back I had similiar symptoms as you- wheezing- coughing up blood - etc.
I was having a "reaction" to aspirigilis(sp-sorry!). My doc put me on prednisone and sporanox(anti fungul). I was on both meds for a while but they really helped. You can tell if you are having a reaction to the aspirgilis from a blood test. I just had one myself and everything was in normal range for that.
You deserve the right to be treated properly!!!!! Keep pushing for more tests! In this day and age there is no reason why you shouldn't be treated right. I feel bad for you, I feel your pain. It really stinks when DRs don't listen to you and think they know everything. You know your body and you know something isn't right!!! Keep on calling till you get answers <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope you feel better soon!-Carrie<img src="i/expressions/face-icon-small-happy.gif" border="0">
nickandlivsmom
New member
Hi Liz
A few years back I had similiar symptoms as you- wheezing- coughing up blood - etc.
I was having a "reaction" to aspirigilis(sp-sorry!). My doc put me on prednisone and sporanox(anti fungul). I was on both meds for a while but they really helped. You can tell if you are having a reaction to the aspirgilis from a blood test. I just had one myself and everything was in normal range for that.
You deserve the right to be treated properly!!!!! Keep pushing for more tests! In this day and age there is no reason why you shouldn't be treated right. I feel bad for you, I feel your pain. It really stinks when DRs don't listen to you and think they know everything. You know your body and you know something isn't right!!! Keep on calling till you get answers <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope you feel better soon!-Carrie<img src="i/expressions/face-icon-small-happy.gif" border="0">
A few years back I had similiar symptoms as you- wheezing- coughing up blood - etc.
I was having a "reaction" to aspirigilis(sp-sorry!). My doc put me on prednisone and sporanox(anti fungul). I was on both meds for a while but they really helped. You can tell if you are having a reaction to the aspirgilis from a blood test. I just had one myself and everything was in normal range for that.
You deserve the right to be treated properly!!!!! Keep pushing for more tests! In this day and age there is no reason why you shouldn't be treated right. I feel bad for you, I feel your pain. It really stinks when DRs don't listen to you and think they know everything. You know your body and you know something isn't right!!! Keep on calling till you get answers <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope you feel better soon!-Carrie<img src="i/expressions/face-icon-small-happy.gif" border="0">
Emily65Roses
New member
Be pushy and don't take no for an answer....
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.
Emily65Roses
New member
Be pushy and don't take no for an answer....
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.
Aspergillus is a reaction caused by mold. It's one of the first things my current doctor tests for when I'm not feeling well because I react pretty badly. Usually, the reactions don't hit me right away. I just keep getting sick and nothing seems to help. One year I was in the hospital every six weeks, that doctor kept saying that it wasn't mold causing the problem (I've since switched). But when my Aspergillus levels are up he puts me on an antifungal and Cipro. That usually helps out. You really should keep hounding your doctor until he does something. Some doctors just think they know better than a person who is living in their own body.
-Solana
-Solana
Aspergillus is a reaction caused by mold. It's one of the first things my current doctor tests for when I'm not feeling well because I react pretty badly. Usually, the reactions don't hit me right away. I just keep getting sick and nothing seems to help. One year I was in the hospital every six weeks, that doctor kept saying that it wasn't mold causing the problem (I've since switched). But when my Aspergillus levels are up he puts me on an antifungal and Cipro. That usually helps out. You really should keep hounding your doctor until he does something. Some doctors just think they know better than a person who is living in their own body.
-Solana
-Solana
thelizardqueen
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br>Be pushy and don't take no for an answer....
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.<hr></blockquote>
I couldn't believe my doc told my nurse that it may all be in my head! I've had anxiety for 9 years now, and have been fine with it. Anxiety doesn't cause me to wheeze on a continual basis and cough up blood or feel rundown! I was hurt and upset that he thought it was all in my head! After all the excellent care I've taken of myself. I like to think that I'm in excellent condition because I listen to what my body tells me. If I could switch docs, I would seriously consider it, but he's the only CF specialist in my province. I'd hate to think that I would have to move out of province to get better care.
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.<hr></blockquote>
I couldn't believe my doc told my nurse that it may all be in my head! I've had anxiety for 9 years now, and have been fine with it. Anxiety doesn't cause me to wheeze on a continual basis and cough up blood or feel rundown! I was hurt and upset that he thought it was all in my head! After all the excellent care I've taken of myself. I like to think that I'm in excellent condition because I listen to what my body tells me. If I could switch docs, I would seriously consider it, but he's the only CF specialist in my province. I'd hate to think that I would have to move out of province to get better care.
thelizardqueen
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br>Be pushy and don't take no for an answer....
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.<hr></blockquote>
I couldn't believe my doc told my nurse that it may all be in my head! I've had anxiety for 9 years now, and have been fine with it. Anxiety doesn't cause me to wheeze on a continual basis and cough up blood or feel rundown! I was hurt and upset that he thought it was all in my head! After all the excellent care I've taken of myself. I like to think that I'm in excellent condition because I listen to what my body tells me. If I could switch docs, I would seriously consider it, but he's the only CF specialist in my province. I'd hate to think that I would have to move out of province to get better care.
Or switch docs. That's totally unacceptable.
Ohhh she's not really sick, she's just crazy and having an anxiety attack. She's been dealing with the anxiety for years, but obviously she doesn't know what the hell she's talking about.
I have depression and occasional anxiety and if any doc ever tried to tell me that he was SURE that that was the cause (no matter what I said), I'd tell him to effing shove it.<hr></blockquote>
I couldn't believe my doc told my nurse that it may all be in my head! I've had anxiety for 9 years now, and have been fine with it. Anxiety doesn't cause me to wheeze on a continual basis and cough up blood or feel rundown! I was hurt and upset that he thought it was all in my head! After all the excellent care I've taken of myself. I like to think that I'm in excellent condition because I listen to what my body tells me. If I could switch docs, I would seriously consider it, but he's the only CF specialist in my province. I'd hate to think that I would have to move out of province to get better care.