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Good New / Bad News
- Thread starter Nervous1
- Start date
mom2lillian
New member
hello
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
mom2lillian
New member
hello
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
mom2lillian
New member
hello
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
mom2lillian
New member
hello
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
mom2lillian
New member
hello
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
as you mentioned getting a sputum is a good idea, if you do culture some of the *typical* CF'er bacteria then that in conjunction with your history should make a good case towards getting the full panel covered. One additional item you can get tested is fecal fat (you can search it on this site), if you are excreting higher than normal levels that also solidifies your case for testing. A friend of mine is going through this with their daughter and the clinic had the small panel done-no dice so then they did the above two tests and wrote it into a letter with a note saying clinical history suggestive of CF and used that to try and get it covered by insurance.
Also, if you pay out of pocket Ambry charges $1400, just throwing it out there as an option since I am sure you realize that it may be cheaper than getting sick a bunch more times before you are *sick enough* to get the test. --that infuriates me dont get me started.
Anyway I am adult diagnoses at 21 and had lots hassles getting dx so if you ever want to chat PM me.
Thanks for the support and all the info. $1400 for the Ambry test is a huge amount for me. I think I will hold off for now and wait until they find even more mutations, since even Ambry indicated that right now they have only seen 1 or 2 people like me at most. I'm definitely not ruling it out though because I agree that it doesn't make sense to wait until I am *sick enough* to convince someone to pay for the test.
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Thanks for the support and all the info. $1400 for the Ambry test is a huge amount for me. I think I will hold off for now and wait until they find even more mutations, since even Ambry indicated that right now they have only seen 1 or 2 people like me at most. I'm definitely not ruling it out though because I agree that it doesn't make sense to wait until I am *sick enough* to convince someone to pay for the test.
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Thanks for the support and all the info. $1400 for the Ambry test is a huge amount for me. I think I will hold off for now and wait until they find even more mutations, since even Ambry indicated that right now they have only seen 1 or 2 people like me at most. I'm definitely not ruling it out though because I agree that it doesn't make sense to wait until I am *sick enough* to convince someone to pay for the test.
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Thanks for the support and all the info. $1400 for the Ambry test is a huge amount for me. I think I will hold off for now and wait until they find even more mutations, since even Ambry indicated that right now they have only seen 1 or 2 people like me at most. I'm definitely not ruling it out though because I agree that it doesn't make sense to wait until I am *sick enough* to convince someone to pay for the test.
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Thanks for the support and all the info. $1400 for the Ambry test is a huge amount for me. I think I will hold off for now and wait until they find even more mutations, since even Ambry indicated that right now they have only seen 1 or 2 people like me at most. I'm definitely not ruling it out though because I agree that it doesn't make sense to wait until I am *sick enough* to convince someone to pay for the test.
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!
Unfortunately I have been unsuccessful in convincing the doctors to treat me as if I have CF. My pediatrician friend who suggested CF to me and insisted that I be tested for CF mentioned that CFers in the health system here are entitled to a lot of benefits, both medical and other. Reading between the lines I assume this means that there is no chance that anyone will officially state that I should receive CF treatment because it is very expensive and would imply that I am eligible for various benefits.
Right now I'm going to do a lot of research and continue to pick your brains, and then the next time I go to my pulmonologist I will make my requests without specifically mentioning the word CF. That's my plan at the moment anyway.
Questions that pop into my mind right now ...
1) I take a high dose of Seretide (inhaled combination bronchodialators + steroids) twice a day and I walk as physical exercise 3 or 4 times a week. Is there anything else I should be doing or requesting from the doctor in terms of preventative measures?
2) My GP suggested measuring once a day with a peak flow meter to see if changes in airflow somehow correlate with how I feel. Is there anything else that should be monitored?
3) Next time I have an active infection (bronchitis, sinusitis, or pneumonia) I will ask for a sputum culture. Is there anything else I should request?
4) Any ideas for how to request a fecal fat test without mentioning CF? <img src="i/expressions/face-icon-small-smile.gif" border="0">
Have a great day everybody, and thank for everything!!!