I have heard many of you talk about preventative care and speak of the importance of finding a doctor who focuses on teaching and treating preventative care but I have to be hontest I don't really know what that means or what that would look like or be? I'm trying really hard to figure all of this CF stuff out without getting discouraged, can anyone explain what that means. What are some examples of that and where I can start looking for a doctor who can help me with that. Looking over the past four years I really don't feel that my doctors have done much except push drugs. Any help would be greatly appreciated!! If you want you can also email me directly at opatza@sonoma.edu. Thanks for all your help! xoxo
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What Is Preventative Care?
- Thread starter annieop86
- Start date
I have heard many of you talk about preventative care and speak of the importance of finding a doctor who focuses on teaching and treating preventative care but I have to be hontest I don't really know what that means or what that would look like or be? I'm trying really hard to figure all of this CF stuff out without getting discouraged, can anyone explain what that means. What are some examples of that and where I can start looking for a doctor who can help me with that. Looking over the past four years I really don't feel that my doctors have done much except push drugs. Any help would be greatly appreciated!! If you want you can also email me directly at opatza@sonoma.edu. Thanks for all your help! xoxo
I have heard many of you talk about preventative care and speak of the importance of finding a doctor who focuses on teaching and treating preventative care but I have to be hontest I don't really know what that means or what that would look like or be? I'm trying really hard to figure all of this CF stuff out without getting discouraged, can anyone explain what that means. What are some examples of that and where I can start looking for a doctor who can help me with that. Looking over the past four years I really don't feel that my doctors have done much except push drugs. Any help would be greatly appreciated!! If you want you can also email me directly at opatza@sonoma.edu. Thanks for all your help! xoxo
I have heard many of you talk about preventative care and speak of the importance of finding a doctor who focuses on teaching and treating preventative care but I have to be hontest I don't really know what that means or what that would look like or be? I'm trying really hard to figure all of this CF stuff out without getting discouraged, can anyone explain what that means. What are some examples of that and where I can start looking for a doctor who can help me with that. Looking over the past four years I really don't feel that my doctors have done much except push drugs. Any help would be greatly appreciated!! If you want you can also email me directly at opatza@sonoma.edu. Thanks for all your help! xoxo
I have heard many of you talk about preventative care and speak of the importance of finding a doctor who focuses on teaching and treating preventative care but I have to be hontest I don't really know what that means or what that would look like or be? I'm trying really hard to figure all of this CF stuff out without getting discouraged, can anyone explain what that means. What are some examples of that and where I can start looking for a doctor who can help me with that. Looking over the past four years I really don't feel that my doctors have done much except push drugs. Any help would be greatly appreciated!! If you want you can also email me directly at opatza@sonoma.edu. Thanks for all your help! xoxo
Mockingbird
New member
Preventative care basiucally means aggressively treating your CF before you get sick. For example, a clinic which exersizes preventative care might give a two week course of IVs every year regradless of whether you happen to be sick or not. Or, they may have you breathing TOBI even though you do not have a bacterial infection.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
Mockingbird
New member
Preventative care basiucally means aggressively treating your CF before you get sick. For example, a clinic which exersizes preventative care might give a two week course of IVs every year regradless of whether you happen to be sick or not. Or, they may have you breathing TOBI even though you do not have a bacterial infection.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
Mockingbird
New member
Preventative care basiucally means aggressively treating your CF before you get sick. For example, a clinic which exersizes preventative care might give a two week course of IVs every year regradless of whether you happen to be sick or not. Or, they may have you breathing TOBI even though you do not have a bacterial infection.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
Mockingbird
New member
Preventative care basiucally means aggressively treating your CF before you get sick. For example, a clinic which exersizes preventative care might give a two week course of IVs every year regradless of whether you happen to be sick or not. Or, they may have you breathing TOBI even though you do not have a bacterial infection.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
Mockingbird
New member
Preventative care basiucally means aggressively treating your CF before you get sick. For example, a clinic which exersizes preventative care might give a two week course of IVs every year regradless of whether you happen to be sick or not. Or, they may have you breathing TOBI even though you do not have a bacterial infection.
<br />
<br />In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
<br />
<br />Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
<br />
<br />In other words, they are trying to prevent your disease from getting worse, rather than waiting for your disease to get worse and then treat it.
<br />
<br />Also, preventative care isn't for everyone. People get all hyped up on preventative care because it is proven to increase your life span. However, you also have to realize preventative care is a lot of work, and takes up a lot of free time. It all depends on what priorities you have. If health and living a long time is your top priority, then preventative care is the way to go. If you have other priorities in life, however, you may not want to put that much effort into your treatments, even if it means having a little shorter life span.
Nightwriter
New member
Annieop86,
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Nightwriter
New member
Annieop86,
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Nightwriter
New member
Annieop86,
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Nightwriter
New member
Annieop86,
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
Nightwriter
New member
Annieop86,
<br />
<br />Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
<br />
<br />Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
<br />
<br />I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
<br />
<br />I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
<br />
<br />Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
<br />
<br />If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
<br />
<br />NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
<br />
<br />In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
<br />
<br />A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
<br />
<br />Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
<br />
<br />See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
<br />
<br />The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
<br />
<br />I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
<br />
<br />
<br />
<br />
<br />Eleven years ago, when I was at my absolute lowest in the hospital, my Mother asked me if maybe I should try another doctor. She wondered if somebody else might help me since I was really declining. But I loved my doctor. He called me right back, ran to meet me at the E.R., had a little nickname for me (we'll skip that). The nurses told me I had the top doctor at a top hospital. My mother said, "But he does nothing for you. He waits for you to get sick and then gives you antibiotics." The trouble was I was becoming resistant to almost everything, in addition to all my other problems.
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<br />Cut to: a few months later. I'm reading the newspaper and see a lecture being given at another hospital which was being sponsored by "Secure Horizens", some kind of senior citizen medical insurance. The topic was, "Are you on antibiotics all the time?" (Yes!!!) "Can inflamation be making you sick?" (Come on, really?)
<br />
<br />I went to the lecture. I was the only one under the age of 65. But I was fascinated by what I heard. The doctor talked about her patients, (accompanied by X rays, charts, graphs) mostly lung, sinus, and other people with weird mysterious ailments that had gone from doctor to doctor. When the issue of inflamation was addressed (I'll get to this) hopeless problems started improving. She said that she didn't "rounds" in the hospital, since her patients didn't need to go to the hospital.
<br />
<br />I started going to that doctor and of course, with each change she'd throw at me, I'd become skeptical all over again. She was the latest flavor in a long line of doctors, chiropractors, alternative therapists -- you name it-- I had been to them, and I kept getting worse. The Doctor didn't promise me certainty or a quick fix. But she did something no other doctor had ever done. She spent hours with me asking me about where I lived, how I lived, what I ate, where I worked, my family, what my environment was like at work, and pinpointing events prior to onset of original diagnosis, and subsequent exacerbations. Detailed questions, questionaires. She did detective work and encouraged me to do the same.
<br />
<br />Then she started introducing changes slowly. And as I had more and more success, I was motivated to do more (got rid of a post nasal drip that I always had). Let me give you an example of something she taught me during my first visit. She first wanted to see if there was an asthma component to my illness. (No doctor ever talked to me about asthma which I then found out I had.) And if there was asthma, that actually would be good news. Asthma is treatable. Treat the asthma portion, lung function goes up. If your airways are swollen from either allergies or irritants (eg. polishing your nails, a hot, smoggy day, perfume, or things like pollen although you may not have a true "allergy") your lungs are inflamed -- which can make you feel ill, cough, produce mucous, bleed, have fever, etc.,
<br />
<br />If the airways are swollen from inflamation, they trap mucous with bacteria -- that cause exacerbations. You don't always have to have an infection. Although, if you have inflamation long enough, it can develop into an infection. (I am not a doctor and I'm trying to explain this as I understand it). Anyway, inflamation can cause an exacerbation with all the same symptoms as an infection. Which can also explain why sometimes, people are on antibiotics or IV meds and they don't get any better. I culture pseudomonas, but sometimes it's sitting there, not doing anything! But I am not the one that makes that determination. The doctor makes that call. And then I do treatments to bring down inflamation if that's what it is. Instead of automatically pumping me full of antibiotics.
<br />
<br />NOTE: I am not suggesting that anyone not do meds. I'm just sharing what I've learned and what is right for me. I hope that patients will start opening dialogues with their doctors about this so that doctors might educate themselves in other ways to treat people, rather than immediate antibiotics for every exacerbation.
<br />
<br />In my own case I started to identify triggers that set off exacerbations 2 days later. (And you can start doing that also.) A few quick examples of things that made me really sick: after visiting gardens on a windy day; I got reallly ill after being in a tire store. Plane trips. Another time, I started coughing blood on the street during a very cold night; But it's mostly the stuff in your everyday life that keeps your lungs inflamed.
<br />
<br />A few examples of how to remove irritants that pretty much is bad for everyone: Remove carpet, stop using fragrances everywhere, clean with baking soda and vinegar (or similar products),buy a hepa air filter for your home, carry a charcoal mask or a silk scarf and cover your nose and mouth if you are on a busy street, or a bus goes by you, or in cold weather (this is HUGE). Notice what you've done in a day or two before an exacerbation, I won't tell you not to have a pet (although they are problematic), but keep them out of the bedroom, don't sleep with down pillows or blankets, keep windows closed with the air conditioning on, wear a mask when you have your hair colored, --- there's so much more. This is one small area. I'm just trying to give you a taste of things you can start doing today.
<br />
<br />Next, finding a doctor. Harder. Much harder. I'd start with the internet. Keep on the lookout in your newspaper, TV, and online for doctors that use traditional medicine mixed with a holistic point of view. Too alternative can cause problems (I had one quack giving me animal lung tissue that was under the gravitaional pull of Mars. So be careful. )
<br />
<br />See an allergist. Remember even if you test negative -- they can't test for everything. But you might get some clues. Allergy people are usually sensitive to lots of other things too. If you're not doing a nasal rinse, buy a kit. When we sleep, mucous slips down into our lungs irritating them.
<br />
<br />The biggest points are these. C.F. varies in severity. An infant that is hospitalized 5 times in a year -- that's a tough one. I don't know who can be helped. But is it possible that there is room for improvement in most people? Is it possible that doctors start recognizing that some exacerbations are inflamation? Is it possible for patients, once educated, start recognizing what triggers are and avoid them? Can people have less hospitilizations, and antibiotics when truly needed? Can the disease progression be slowed and lung function maintained or go up, rather than steadily down? My doctor thinks so. And I am passing along some things of these ideas to you.
<br />
<br />I hope this helps a little. I wanted to answer your question because someone helped me and if you or anyone out there can be helped, that would really be great.
<br />
<br />
<br />