I use a pari neb and do tobi all the time. The only problem I have it that it takes over 45 every day to do it, twice a day. On the upside I get to watch 1.5. hours of tv per day <img src="i/expressions/face-icon-small-smile.gif" border="0">. Does anyone know how to make it go faster?
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TOBI
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I use a pari neb and do tobi all the time. The only problem I have it that it takes over 45 every day to do it, twice a day. On the upside I get to watch 1.5. hours of tv per day <img src="i/expressions/face-icon-small-smile.gif" border="0">. Does anyone know how to make it go faster?
I use a pari neb and do tobi all the time. The only problem I have it that it takes over 45 every day to do it, twice a day. On the upside I get to watch 1.5. hours of tv per day <img src="i/expressions/face-icon-small-smile.gif" border="0">. Does anyone know how to make it go faster?
I use a pari neb and do tobi all the time. The only problem I have it that it takes over 45 every day to do it, twice a day. On the upside I get to watch 1.5. hours of tv per day <img src="i/expressions/face-icon-small-smile.gif" border="0">. Does anyone know how to make it go faster?
I use a pari neb and do tobi all the time. The only problem I have it that it takes over 45 every day to do it, twice a day. On the upside I get to watch 1.5. hours of tv per day <img src="i/expressions/face-icon-small-smile.gif" border="0">. Does anyone know how to make it go faster?
Nightwriter
New member
The fact that the clinic is putting healthy patients on Tobi in of itself is worrisome. Do they do cultures and ignore them? Do they treat asymptomatic people with heavy duty drugs?Treating people with antibiotics who don't need them has made our whole society vulnerable to things like MRSA and resistant pseudomonas, etc. The clinic may be trying to get their numbers up. They will win the battle but lose the war. Eventually all the people who are wasting the use of a great antibiotic will be resistant to Tobi. What research are they basing this on? I'd ask for the double blind study they are basing their protocol on. Healthy patients on Tobi?!! This is a quick fix rather than test people for asthma/allergies/irritants and questioning people about their lifestyles which take their staff time.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Nightwriter
New member
The fact that the clinic is putting healthy patients on Tobi in of itself is worrisome. Do they do cultures and ignore them? Do they treat asymptomatic people with heavy duty drugs?Treating people with antibiotics who don't need them has made our whole society vulnerable to things like MRSA and resistant pseudomonas, etc. The clinic may be trying to get their numbers up. They will win the battle but lose the war. Eventually all the people who are wasting the use of a great antibiotic will be resistant to Tobi. What research are they basing this on? I'd ask for the double blind study they are basing their protocol on. Healthy patients on Tobi?!! This is a quick fix rather than test people for asthma/allergies/irritants and questioning people about their lifestyles which take their staff time.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Nightwriter
New member
The fact that the clinic is putting healthy patients on Tobi in of itself is worrisome. Do they do cultures and ignore them? Do they treat asymptomatic people with heavy duty drugs?Treating people with antibiotics who don't need them has made our whole society vulnerable to things like MRSA and resistant pseudomonas, etc. The clinic may be trying to get their numbers up. They will win the battle but lose the war. Eventually all the people who are wasting the use of a great antibiotic will be resistant to Tobi. What research are they basing this on? I'd ask for the double blind study they are basing their protocol on. Healthy patients on Tobi?!! This is a quick fix rather than test people for asthma/allergies/irritants and questioning people about their lifestyles which take their staff time.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Nightwriter
New member
The fact that the clinic is putting healthy patients on Tobi in of itself is worrisome. Do they do cultures and ignore them? Do they treat asymptomatic people with heavy duty drugs?Treating people with antibiotics who don't need them has made our whole society vulnerable to things like MRSA and resistant pseudomonas, etc. The clinic may be trying to get their numbers up. They will win the battle but lose the war. Eventually all the people who are wasting the use of a great antibiotic will be resistant to Tobi. What research are they basing this on? I'd ask for the double blind study they are basing their protocol on. Healthy patients on Tobi?!! This is a quick fix rather than test people for asthma/allergies/irritants and questioning people about their lifestyles which take their staff time.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
Nightwriter
New member
The fact that the clinic is putting healthy patients on Tobi in of itself is worrisome. Do they do cultures and ignore them? Do they treat asymptomatic people with heavy duty drugs?Treating people with antibiotics who don't need them has made our whole society vulnerable to things like MRSA and resistant pseudomonas, etc. The clinic may be trying to get their numbers up. They will win the battle but lose the war. Eventually all the people who are wasting the use of a great antibiotic will be resistant to Tobi. What research are they basing this on? I'd ask for the double blind study they are basing their protocol on. Healthy patients on Tobi?!! This is a quick fix rather than test people for asthma/allergies/irritants and questioning people about their lifestyles which take their staff time.
<br />
<br />Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
<br />
<br />I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
<br />
<br />When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
<br />
<br />Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
<br />
<br />Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
<br />
<br />One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
<br />
<br />Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
<br />
<br />And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
<br />
<br />And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
<br />
<br />Christina, I am not going to give you medical advice, but I'd like you to read my story in some other posts and you will understand that dropping PFT's-- unless you have an active infection --may very well be inflammation. It's something that you should discuss with them or I'd go to another clinic or insist on an asthma consult. It's your body. Your health. Your decision. I am just suggesting that you get as much medical input as possible about your case. Look at the whole person, not just a pair of lungs. The thing that is amazing to me is that you have had extraordinary triggers, but no one is considering that.
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<br />I went to a CF clinic for the first time this year (due to an insurance program I am forcing me to) and was horrified at their cookie cutter advice to me. They told me to increase my BMI (I purposely keep my weight at a level that is right for my body type), go on maintinance Zithromax, and take Pulmozyme. They told me eventually I will need enzymes when I have no digestive issues and my mutation combination causes bronchiectisis which in fact is what I have, but they were unaware of.
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<br />When I finally spoke to the doctor there, I said that I had my own doctor, none of these recomendations sounded right to me and I would run everything by my personal physician.
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<br />Later, when I told my doctor their recommendations, she disagreed with every one of them. She said why would they put me on Zithromax when I am stable? I hadn't been on any antibiotics in two years. Ot I.V.'s in 11 years (ever since going to this doctor). My PFT's have actually gone up to the highest they've been in 15 years. I don't need to put on weight. And I was on Pulmozyme for at least 10 years and did better off of it (may work for you, Christina). And by being on Zithromax, I found studies that showed within 3 years in 85% of people -- Staph becomes completely resistant, which obviously can lead to MRSA.
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<br />Again, I am saying make your decision with a doctor that looks at you as a whole person. I nam not suggesting you go against medical advice, but I would not trust one doctor or one clinic that goes against what your instints are telling you. That is not the only doctor or the only clinic.
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<br />One more point, you must learn to control your environment. You mention cleaning. If you used fragrance free products, a hepa vacuum, wore a mask for heavier dust exposure, cleaning will not bother you. You have to learn about how your environment affects your lung function then you will understand more about what is happening to you.
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<br />Environmental triggers work in two ways. One is immediate. You get a reaction right away. The other is more dangerous. The kind that slowly builds inflammation slowly making us sick. For instance if you had mold in your house, it may take a while to make you sick and you would have no idea why.
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<br />And another suggestion for hypertonic saline. If you want to add a second time per day, just use a lower percentage. Buy some .09% and dilute the 7% a little until the hoarseness goes away. I think H.S. is awesome.
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<br />And finally, try not to get upset. If you have astham and allergies, this will be a great thing. You can address them and go back up to your wonderful PFTs.
cabgodfrey
New member
We were having the same issue with Tobi taking 35 minutes or more using the Pari Proneb II. I did some research and the Tobi website says that the only FDA approved compressor to be used with Tobi is the DeVilbiss. So, we bought one and it now takes only 20 mintues to do Tobi. We are a happy family. Do your homework and research.
cabgodfrey
New member
We were having the same issue with Tobi taking 35 minutes or more using the Pari Proneb II. I did some research and the Tobi website says that the only FDA approved compressor to be used with Tobi is the DeVilbiss. So, we bought one and it now takes only 20 mintues to do Tobi. We are a happy family. Do your homework and research.
cabgodfrey
New member
We were having the same issue with Tobi taking 35 minutes or more using the Pari Proneb II. I did some research and the Tobi website says that the only FDA approved compressor to be used with Tobi is the DeVilbiss. So, we bought one and it now takes only 20 mintues to do Tobi. We are a happy family. Do your homework and research.
cabgodfrey
New member
We were having the same issue with Tobi taking 35 minutes or more using the Pari Proneb II. I did some research and the Tobi website says that the only FDA approved compressor to be used with Tobi is the DeVilbiss. So, we bought one and it now takes only 20 mintues to do Tobi. We are a happy family. Do your homework and research.
cabgodfrey
New member
We were having the same issue with Tobi taking 35 minutes or more using the Pari Proneb II. I did some research and the Tobi website says that the only FDA approved compressor to be used with Tobi is the DeVilbiss. So, we bought one and it now takes only 20 mintues to do Tobi. We are a happy family. Do your homework and research.