Delta F508 / R117H-7T Article

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Alyssa

New member
Ditto to all !!! Cuddos to Emily for finding this article!!! Wow!!! what a great read.

Yes Lauren -- That paragraph also struck me as ....oh I don't know... scary? I would be furious to learn I picked up B. Cepacia at clinic -- that should no longer be happening. I wonder too, how it is that they could have B. Cepacia and yet still have FEV1 of 100% -- I know the genomovar numbers are important, but didn't know that some of them would still allow a person to maintain such high FEV1 - maybe just because these men were so healthy in comparison already, perhaps that's why it didn't effect them like others with more classic CF.
 
A

Alyssa

New member
Ditto to all !!! Cuddos to Emily for finding this article!!! Wow!!! what a great read.

Yes Lauren -- That paragraph also struck me as ....oh I don't know... scary? I would be furious to learn I picked up B. Cepacia at clinic -- that should no longer be happening. I wonder too, how it is that they could have B. Cepacia and yet still have FEV1 of 100% -- I know the genomovar numbers are important, but didn't know that some of them would still allow a person to maintain such high FEV1 - maybe just because these men were so healthy in comparison already, perhaps that's why it didn't effect them like others with more classic CF.
 
A

Alyssa

New member
Ditto to all !!! Cuddos to Emily for finding this article!!! Wow!!! what a great read.

Yes Lauren -- That paragraph also struck me as ....oh I don't know... scary? I would be furious to learn I picked up B. Cepacia at clinic -- that should no longer be happening. I wonder too, how it is that they could have B. Cepacia and yet still have FEV1 of 100% -- I know the genomovar numbers are important, but didn't know that some of them would still allow a person to maintain such high FEV1 - maybe just because these men were so healthy in comparison already, perhaps that's why it didn't effect them like others with more classic CF.
 
A

Alyssa

New member
Ditto to all !!! Cuddos to Emily for finding this article!!! Wow!!! what a great read.

Yes Lauren -- That paragraph also struck me as ....oh I don't know... scary? I would be furious to learn I picked up B. Cepacia at clinic -- that should no longer be happening. I wonder too, how it is that they could have B. Cepacia and yet still have FEV1 of 100% -- I know the genomovar numbers are important, but didn't know that some of them would still allow a person to maintain such high FEV1 - maybe just because these men were so healthy in comparison already, perhaps that's why it didn't effect them like others with more classic CF.
 
A

Alyssa

New member
Ditto to all !!! Cuddos to Emily for finding this article!!! Wow!!! what a great read.

Yes Lauren -- That paragraph also struck me as ....oh I don't know... scary? I would be furious to learn I picked up B. Cepacia at clinic -- that should no longer be happening. I wonder too, how it is that they could have B. Cepacia and yet still have FEV1 of 100% -- I know the genomovar numbers are important, but didn't know that some of them would still allow a person to maintain such high FEV1 - maybe just because these men were so healthy in comparison already, perhaps that's why it didn't effect them like others with more classic CF.
 
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Mommafirst

Guest
Lauren -- I agree that part is very scary. I have asked repeatedly about cross contamination issues at our clinic. Most of the answers are suitable to me: different days for child clinic vs. adult clinic. B. Cepacia patients come in for the latest appointments of the day, whereas those culturing nothing come in early. All rooms are cleaned and santitzed between every use -- most rooms only get one patient in it all day. But when I asked about hospital contamination issues, outside of the clinic, the doctor just looked at me and said, "we've been doing this a long time." As if we aren't supposed to question!!!
 
M

Mommafirst

Guest
Lauren -- I agree that part is very scary. I have asked repeatedly about cross contamination issues at our clinic. Most of the answers are suitable to me: different days for child clinic vs. adult clinic. B. Cepacia patients come in for the latest appointments of the day, whereas those culturing nothing come in early. All rooms are cleaned and santitzed between every use -- most rooms only get one patient in it all day. But when I asked about hospital contamination issues, outside of the clinic, the doctor just looked at me and said, "we've been doing this a long time." As if we aren't supposed to question!!!
 
M

Mommafirst

Guest
Lauren -- I agree that part is very scary. I have asked repeatedly about cross contamination issues at our clinic. Most of the answers are suitable to me: different days for child clinic vs. adult clinic. B. Cepacia patients come in for the latest appointments of the day, whereas those culturing nothing come in early. All rooms are cleaned and santitzed between every use -- most rooms only get one patient in it all day. But when I asked about hospital contamination issues, outside of the clinic, the doctor just looked at me and said, "we've been doing this a long time." As if we aren't supposed to question!!!
 
M

Mommafirst

Guest
Lauren -- I agree that part is very scary. I have asked repeatedly about cross contamination issues at our clinic. Most of the answers are suitable to me: different days for child clinic vs. adult clinic. B. Cepacia patients come in for the latest appointments of the day, whereas those culturing nothing come in early. All rooms are cleaned and santitzed between every use -- most rooms only get one patient in it all day. But when I asked about hospital contamination issues, outside of the clinic, the doctor just looked at me and said, "we've been doing this a long time." As if we aren't supposed to question!!!
 
M

Mommafirst

Guest
Lauren -- I agree that part is very scary. I have asked repeatedly about cross contamination issues at our clinic. Most of the answers are suitable to me: different days for child clinic vs. adult clinic. B. Cepacia patients come in for the latest appointments of the day, whereas those culturing nothing come in early. All rooms are cleaned and santitzed between every use -- most rooms only get one patient in it all day. But when I asked about hospital contamination issues, outside of the clinic, the doctor just looked at me and said, "we've been doing this a long time." As if we aren't supposed to question!!!
 
R

Ratatosk

Administrator
Staff member
One of the reasons we don't go to the regular cf clinics locally is because of the cross contamination issue. When we first started going, DS was the youngest, so they'd assign us a room with a crib. Then we found out that this was the exception all the other patients went from room to room to see the different medical staff. When we stated our concerns about the crowded community waiting room, shared toys, etc. Doctor got defensive and said "you send him to daycare." To which our response was, there aren't any cfers at daycre. We were told they've never had a case of cepacia at the clinic; however, I knew of two cfers who maybe no longer went to the clinic, but still saw the same doctors, staff, so we felt they were being less than forthright.

Because of our concerns, they made arrangments for the receptionist to put us in a room right away -- after we walked out of the clinic when it became increasingly crowded. That worked ONCE. The last clinic appointment we went to, we were placed in an exam room which was dirty, smelled like body odor. The waiting room was filthy -- kids table was covered with sticky goo, but we held DS away from it. Anyway, a nurse came in and said "okay, we're going to swap rooms. I walked in ahead and there was a patient sitting there with his dad, had a very productive cough and I said, I'm sorry, but we're not moving. Got into an argument with the nurse, threatened to leave. Didn't have to switch rooms, but sat for an hour and 20 minutes before seeing anyone after that.
 
R

Ratatosk

Administrator
Staff member
One of the reasons we don't go to the regular cf clinics locally is because of the cross contamination issue. When we first started going, DS was the youngest, so they'd assign us a room with a crib. Then we found out that this was the exception all the other patients went from room to room to see the different medical staff. When we stated our concerns about the crowded community waiting room, shared toys, etc. Doctor got defensive and said "you send him to daycare." To which our response was, there aren't any cfers at daycre. We were told they've never had a case of cepacia at the clinic; however, I knew of two cfers who maybe no longer went to the clinic, but still saw the same doctors, staff, so we felt they were being less than forthright.

Because of our concerns, they made arrangments for the receptionist to put us in a room right away -- after we walked out of the clinic when it became increasingly crowded. That worked ONCE. The last clinic appointment we went to, we were placed in an exam room which was dirty, smelled like body odor. The waiting room was filthy -- kids table was covered with sticky goo, but we held DS away from it. Anyway, a nurse came in and said "okay, we're going to swap rooms. I walked in ahead and there was a patient sitting there with his dad, had a very productive cough and I said, I'm sorry, but we're not moving. Got into an argument with the nurse, threatened to leave. Didn't have to switch rooms, but sat for an hour and 20 minutes before seeing anyone after that.
 
R

Ratatosk

Administrator
Staff member
One of the reasons we don't go to the regular cf clinics locally is because of the cross contamination issue. When we first started going, DS was the youngest, so they'd assign us a room with a crib. Then we found out that this was the exception all the other patients went from room to room to see the different medical staff. When we stated our concerns about the crowded community waiting room, shared toys, etc. Doctor got defensive and said "you send him to daycare." To which our response was, there aren't any cfers at daycre. We were told they've never had a case of cepacia at the clinic; however, I knew of two cfers who maybe no longer went to the clinic, but still saw the same doctors, staff, so we felt they were being less than forthright.

Because of our concerns, they made arrangments for the receptionist to put us in a room right away -- after we walked out of the clinic when it became increasingly crowded. That worked ONCE. The last clinic appointment we went to, we were placed in an exam room which was dirty, smelled like body odor. The waiting room was filthy -- kids table was covered with sticky goo, but we held DS away from it. Anyway, a nurse came in and said "okay, we're going to swap rooms. I walked in ahead and there was a patient sitting there with his dad, had a very productive cough and I said, I'm sorry, but we're not moving. Got into an argument with the nurse, threatened to leave. Didn't have to switch rooms, but sat for an hour and 20 minutes before seeing anyone after that.
 
R

Ratatosk

Administrator
Staff member
One of the reasons we don't go to the regular cf clinics locally is because of the cross contamination issue. When we first started going, DS was the youngest, so they'd assign us a room with a crib. Then we found out that this was the exception all the other patients went from room to room to see the different medical staff. When we stated our concerns about the crowded community waiting room, shared toys, etc. Doctor got defensive and said "you send him to daycare." To which our response was, there aren't any cfers at daycre. We were told they've never had a case of cepacia at the clinic; however, I knew of two cfers who maybe no longer went to the clinic, but still saw the same doctors, staff, so we felt they were being less than forthright.

Because of our concerns, they made arrangments for the receptionist to put us in a room right away -- after we walked out of the clinic when it became increasingly crowded. That worked ONCE. The last clinic appointment we went to, we were placed in an exam room which was dirty, smelled like body odor. The waiting room was filthy -- kids table was covered with sticky goo, but we held DS away from it. Anyway, a nurse came in and said "okay, we're going to swap rooms. I walked in ahead and there was a patient sitting there with his dad, had a very productive cough and I said, I'm sorry, but we're not moving. Got into an argument with the nurse, threatened to leave. Didn't have to switch rooms, but sat for an hour and 20 minutes before seeing anyone after that.
 
R

Ratatosk

Administrator
Staff member
One of the reasons we don't go to the regular cf clinics locally is because of the cross contamination issue. When we first started going, DS was the youngest, so they'd assign us a room with a crib. Then we found out that this was the exception all the other patients went from room to room to see the different medical staff. When we stated our concerns about the crowded community waiting room, shared toys, etc. Doctor got defensive and said "you send him to daycare." To which our response was, there aren't any cfers at daycre. We were told they've never had a case of cepacia at the clinic; however, I knew of two cfers who maybe no longer went to the clinic, but still saw the same doctors, staff, so we felt they were being less than forthright.

Because of our concerns, they made arrangments for the receptionist to put us in a room right away -- after we walked out of the clinic when it became increasingly crowded. That worked ONCE. The last clinic appointment we went to, we were placed in an exam room which was dirty, smelled like body odor. The waiting room was filthy -- kids table was covered with sticky goo, but we held DS away from it. Anyway, a nurse came in and said "okay, we're going to swap rooms. I walked in ahead and there was a patient sitting there with his dad, had a very productive cough and I said, I'm sorry, but we're not moving. Got into an argument with the nurse, threatened to leave. Didn't have to switch rooms, but sat for an hour and 20 minutes before seeing anyone after that.
 
A

AbbysMama

New member
Wow! What a great thread and great observations.

In all honesty, I'm glad that we knew ahead of time what the mutations were and that we were given a "genetic diagnosis" and were ENCOURAGED to follow her progression or lack thereof.

I think that the more we can do to arm ourselves with knowledge, the better it will be for our children. I just justify all of my neurotic behavior associated with Abby's health as me preventing any earlier onset of clinical symptoms as possible. It will happen when it happens, but if I can provide as much of a quality environment and watch for things that can be treated early so that maybe she won't present EVER, then it is worth every moment. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm pretty OK with our clinic. Communication in general is good with me and with Dave. They have a strict schedule they adhere to help prevent cross-contamination issues. The rooms SMELL sterile. (I chuckle here because my sister works for Bath & Body Works and my house can SMELL like I've been cooking thanks to the products there).

Liza, your situation at your local clinic sounds awful. They apparently are not looking out for the patients, they are just treating what presents with little regard.

Em
 
A

AbbysMama

New member
Wow! What a great thread and great observations.

In all honesty, I'm glad that we knew ahead of time what the mutations were and that we were given a "genetic diagnosis" and were ENCOURAGED to follow her progression or lack thereof.

I think that the more we can do to arm ourselves with knowledge, the better it will be for our children. I just justify all of my neurotic behavior associated with Abby's health as me preventing any earlier onset of clinical symptoms as possible. It will happen when it happens, but if I can provide as much of a quality environment and watch for things that can be treated early so that maybe she won't present EVER, then it is worth every moment. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm pretty OK with our clinic. Communication in general is good with me and with Dave. They have a strict schedule they adhere to help prevent cross-contamination issues. The rooms SMELL sterile. (I chuckle here because my sister works for Bath & Body Works and my house can SMELL like I've been cooking thanks to the products there).

Liza, your situation at your local clinic sounds awful. They apparently are not looking out for the patients, they are just treating what presents with little regard.

Em
 
A

AbbysMama

New member
Wow! What a great thread and great observations.

In all honesty, I'm glad that we knew ahead of time what the mutations were and that we were given a "genetic diagnosis" and were ENCOURAGED to follow her progression or lack thereof.

I think that the more we can do to arm ourselves with knowledge, the better it will be for our children. I just justify all of my neurotic behavior associated with Abby's health as me preventing any earlier onset of clinical symptoms as possible. It will happen when it happens, but if I can provide as much of a quality environment and watch for things that can be treated early so that maybe she won't present EVER, then it is worth every moment. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm pretty OK with our clinic. Communication in general is good with me and with Dave. They have a strict schedule they adhere to help prevent cross-contamination issues. The rooms SMELL sterile. (I chuckle here because my sister works for Bath & Body Works and my house can SMELL like I've been cooking thanks to the products there).

Liza, your situation at your local clinic sounds awful. They apparently are not looking out for the patients, they are just treating what presents with little regard.

Em
 
A

AbbysMama

New member
Wow! What a great thread and great observations.

In all honesty, I'm glad that we knew ahead of time what the mutations were and that we were given a "genetic diagnosis" and were ENCOURAGED to follow her progression or lack thereof.

I think that the more we can do to arm ourselves with knowledge, the better it will be for our children. I just justify all of my neurotic behavior associated with Abby's health as me preventing any earlier onset of clinical symptoms as possible. It will happen when it happens, but if I can provide as much of a quality environment and watch for things that can be treated early so that maybe she won't present EVER, then it is worth every moment. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm pretty OK with our clinic. Communication in general is good with me and with Dave. They have a strict schedule they adhere to help prevent cross-contamination issues. The rooms SMELL sterile. (I chuckle here because my sister works for Bath & Body Works and my house can SMELL like I've been cooking thanks to the products there).

Liza, your situation at your local clinic sounds awful. They apparently are not looking out for the patients, they are just treating what presents with little regard.

Em
 
A

AbbysMama

New member
Wow! What a great thread and great observations.

In all honesty, I'm glad that we knew ahead of time what the mutations were and that we were given a "genetic diagnosis" and were ENCOURAGED to follow her progression or lack thereof.

I think that the more we can do to arm ourselves with knowledge, the better it will be for our children. I just justify all of my neurotic behavior associated with Abby's health as me preventing any earlier onset of clinical symptoms as possible. It will happen when it happens, but if I can provide as much of a quality environment and watch for things that can be treated early so that maybe she won't present EVER, then it is worth every moment. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm pretty OK with our clinic. Communication in general is good with me and with Dave. They have a strict schedule they adhere to help prevent cross-contamination issues. The rooms SMELL sterile. (I chuckle here because my sister works for Bath & Body Works and my house can SMELL like I've been cooking thanks to the products there).

Liza, your situation at your local clinic sounds awful. They apparently are not looking out for the patients, they are just treating what presents with little regard.

Em
 
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