I am very upset!!

holmfamily1992 · May 21, 2008

Thanks for the support. Honestly,I dont know what I would do without you guys.

I checked into another Care Center today. Its about 4 and 1/2 hours away. U of M in Michigan. Suppose to be really good and they have 14 Pulmonologist on staff which means I dont have to deal with only one bone headed nurse. I understand that they are busy but these are my children. They told me that their docs will probably do another sweat test and thats where I stopped her. I simply told her that there will be no more testing on my son. He has already been diagnosed and we have the results to prove it. She really didnt know what to say.

As far as calling our clinic. For the past 2 weeks I have probably called them at least 6 times and it was only until I instisted they call me back and I also told them that I spoke to Ambry and they told me when to expect the results did the CF nurse return my phone call. I will keep calling. As soon as I know that all the clearances have been made and I will give them the aloted time needed.

I called my primary and asked them to make the referals for the genetic testing. His nurse said they should have them together no later then thursday. Hopefully at that point our insurance company will finally give Ambry the ok. Again, our CF center should have done that. If the nurse didnt know then she should have talked to billing.
It doesnt take rocket sceince. Come on really!!!

Hopefully I will know more tomorrow.
And thanks Stacey about my family. They are pretty great!

Tina

holmfamily1992 · May 21, 2008

Thanks for the support. Honestly,I dont know what I would do without you guys.

I checked into another Care Center today. Its about 4 and 1/2 hours away. U of M in Michigan. Suppose to be really good and they have 14 Pulmonologist on staff which means I dont have to deal with only one bone headed nurse. I understand that they are busy but these are my children. They told me that their docs will probably do another sweat test and thats where I stopped her. I simply told her that there will be no more testing on my son. He has already been diagnosed and we have the results to prove it. She really didnt know what to say.

As far as calling our clinic. For the past 2 weeks I have probably called them at least 6 times and it was only until I instisted they call me back and I also told them that I spoke to Ambry and they told me when to expect the results did the CF nurse return my phone call. I will keep calling. As soon as I know that all the clearances have been made and I will give them the aloted time needed.

I called my primary and asked them to make the referals for the genetic testing. His nurse said they should have them together no later then thursday. Hopefully at that point our insurance company will finally give Ambry the ok. Again, our CF center should have done that. If the nurse didnt know then she should have talked to billing.
It doesnt take rocket sceince. Come on really!!!

Hopefully I will know more tomorrow.
And thanks Stacey about my family. They are pretty great!

Tina

holmfamily1992 · May 21, 2008

Thanks for the support. Honestly,I dont know what I would do without you guys.

I checked into another Care Center today. Its about 4 and 1/2 hours away. U of M in Michigan. Suppose to be really good and they have 14 Pulmonologist on staff which means I dont have to deal with only one bone headed nurse. I understand that they are busy but these are my children. They told me that their docs will probably do another sweat test and thats where I stopped her. I simply told her that there will be no more testing on my son. He has already been diagnosed and we have the results to prove it. She really didnt know what to say.

As far as calling our clinic. For the past 2 weeks I have probably called them at least 6 times and it was only until I instisted they call me back and I also told them that I spoke to Ambry and they told me when to expect the results did the CF nurse return my phone call. I will keep calling. As soon as I know that all the clearances have been made and I will give them the aloted time needed.

I called my primary and asked them to make the referals for the genetic testing. His nurse said they should have them together no later then thursday. Hopefully at that point our insurance company will finally give Ambry the ok. Again, our CF center should have done that. If the nurse didnt know then she should have talked to billing.
It doesnt take rocket sceince. Come on really!!!

Hopefully I will know more tomorrow.
And thanks Stacey about my family. They are pretty great!

Tina

holmfamily1992 · May 21, 2008

Thanks for the support. Honestly,I dont know what I would do without you guys.

I checked into another Care Center today. Its about 4 and 1/2 hours away. U of M in Michigan. Suppose to be really good and they have 14 Pulmonologist on staff which means I dont have to deal with only one bone headed nurse. I understand that they are busy but these are my children. They told me that their docs will probably do another sweat test and thats where I stopped her. I simply told her that there will be no more testing on my son. He has already been diagnosed and we have the results to prove it. She really didnt know what to say.

As far as calling our clinic. For the past 2 weeks I have probably called them at least 6 times and it was only until I instisted they call me back and I also told them that I spoke to Ambry and they told me when to expect the results did the CF nurse return my phone call. I will keep calling. As soon as I know that all the clearances have been made and I will give them the aloted time needed.

I called my primary and asked them to make the referals for the genetic testing. His nurse said they should have them together no later then thursday. Hopefully at that point our insurance company will finally give Ambry the ok. Again, our CF center should have done that. If the nurse didnt know then she should have talked to billing.
It doesnt take rocket sceince. Come on really!!!

Hopefully I will know more tomorrow.
And thanks Stacey about my family. They are pretty great!

Tina

holmfamily1992 · May 21, 2008

Thanks for the support. Honestly,I dont know what I would do without you guys.
 
 I checked into another Care Center today. Its about 4 and 1/2 hours away. U of M in Michigan. Suppose to be really good and they have 14 Pulmonologist on staff which means I dont have to deal with only one bone headed nurse. I understand that they are busy but these are my children. They told me that their docs will probably do another sweat test and thats where I stopped her. I simply told her that there will be no more testing on my son. He has already been diagnosed and we have the results to prove it. She really didnt know what to say.
 
 As far as calling our clinic. For the past 2 weeks I have probably called them at least 6 times and it was only until I instisted they call me back and I also told them that I spoke to Ambry and they told me when to expect the results did the CF nurse return my phone call. I will keep calling. As soon as I know that all the clearances have been made and I will give them the aloted time needed.
 
 I called my primary and asked them to make the referals for the genetic testing. His nurse said they should have them together no later then thursday. Hopefully at that point our insurance company will finally give Ambry the ok. Again, our CF center should have done that. If the nurse didnt know then she should have talked to billing.
 It doesnt take rocket sceince. Come on really!!!
 
 Hopefully I will know more tomorrow.
 And thanks Stacey about my family. They are pretty great!
 
 Tina

Dori · May 21, 2008

I am sorry you are going through this...I am 7 months pregnant and my husband and I are both carriers, and when we found out the shocking news we were pregnant, I immediately scheduled CVS testing for the baby...the test results were supposed to be back in 14 days, and almost 5 WEEKS LATER we got the results saying the baby would have CF. When I was pregnant with my first son, and found out that I had the gene and then that my husband had the gene, I almost missed the window of opportunity to do the testing because I was so far along. Those results took almost 6 WEEKS!! With my most recent testing, the genetic counselor even had the nerve to tell me she did not know who to contact to obtain my results. HELLO!! That's her job!! I ended up calling her every day twice a day after 3 weeks, and I filed a complaint with the physician's group. Then she was supposed to fax the results to the local CF clinic. I visited them last week and she still hadn't done this, and it was supposed to be done almost 2 months ago. When I called her, she pretended she didn't remember who I was, and the FINALLY "Remembered" and said she had already sent them. The lack of professionalism and incompetance is absolutely amazing when it comes to some very sensitive, upsetting, and stressful medical information.

Hang in there, hopefully it will get better, and stay on them about it...

Dori CF Carrier DF508/mom to Brandon, carrier/Mom to baby Brett, who will be born with CF 8/8/08.

Dori · May 21, 2008

I am sorry you are going through this...I am 7 months pregnant and my husband and I are both carriers, and when we found out the shocking news we were pregnant, I immediately scheduled CVS testing for the baby...the test results were supposed to be back in 14 days, and almost 5 WEEKS LATER we got the results saying the baby would have CF. When I was pregnant with my first son, and found out that I had the gene and then that my husband had the gene, I almost missed the window of opportunity to do the testing because I was so far along. Those results took almost 6 WEEKS!! With my most recent testing, the genetic counselor even had the nerve to tell me she did not know who to contact to obtain my results. HELLO!! That's her job!! I ended up calling her every day twice a day after 3 weeks, and I filed a complaint with the physician's group. Then she was supposed to fax the results to the local CF clinic. I visited them last week and she still hadn't done this, and it was supposed to be done almost 2 months ago. When I called her, she pretended she didn't remember who I was, and the FINALLY "Remembered" and said she had already sent them. The lack of professionalism and incompetance is absolutely amazing when it comes to some very sensitive, upsetting, and stressful medical information.

Hang in there, hopefully it will get better, and stay on them about it...

Dori CF Carrier DF508/mom to Brandon, carrier/Mom to baby Brett, who will be born with CF 8/8/08.

Dori · May 21, 2008

I am sorry you are going through this...I am 7 months pregnant and my husband and I are both carriers, and when we found out the shocking news we were pregnant, I immediately scheduled CVS testing for the baby...the test results were supposed to be back in 14 days, and almost 5 WEEKS LATER we got the results saying the baby would have CF. When I was pregnant with my first son, and found out that I had the gene and then that my husband had the gene, I almost missed the window of opportunity to do the testing because I was so far along. Those results took almost 6 WEEKS!! With my most recent testing, the genetic counselor even had the nerve to tell me she did not know who to contact to obtain my results. HELLO!! That's her job!! I ended up calling her every day twice a day after 3 weeks, and I filed a complaint with the physician's group. Then she was supposed to fax the results to the local CF clinic. I visited them last week and she still hadn't done this, and it was supposed to be done almost 2 months ago. When I called her, she pretended she didn't remember who I was, and the FINALLY "Remembered" and said she had already sent them. The lack of professionalism and incompetance is absolutely amazing when it comes to some very sensitive, upsetting, and stressful medical information.

Hang in there, hopefully it will get better, and stay on them about it...

Dori CF Carrier DF508/mom to Brandon, carrier/Mom to baby Brett, who will be born with CF 8/8/08.

Dori · May 21, 2008

I am sorry you are going through this...I am 7 months pregnant and my husband and I are both carriers, and when we found out the shocking news we were pregnant, I immediately scheduled CVS testing for the baby...the test results were supposed to be back in 14 days, and almost 5 WEEKS LATER we got the results saying the baby would have CF. When I was pregnant with my first son, and found out that I had the gene and then that my husband had the gene, I almost missed the window of opportunity to do the testing because I was so far along. Those results took almost 6 WEEKS!! With my most recent testing, the genetic counselor even had the nerve to tell me she did not know who to contact to obtain my results. HELLO!! That's her job!! I ended up calling her every day twice a day after 3 weeks, and I filed a complaint with the physician's group. Then she was supposed to fax the results to the local CF clinic. I visited them last week and she still hadn't done this, and it was supposed to be done almost 2 months ago. When I called her, she pretended she didn't remember who I was, and the FINALLY "Remembered" and said she had already sent them. The lack of professionalism and incompetance is absolutely amazing when it comes to some very sensitive, upsetting, and stressful medical information.

Hang in there, hopefully it will get better, and stay on them about it...

Dori CF Carrier DF508/mom to Brandon, carrier/Mom to baby Brett, who will be born with CF 8/8/08.

Dori · May 21, 2008

I am sorry you are going through this...I am 7 months pregnant and my husband and I are both carriers, and when we found out the shocking news we were pregnant, I immediately scheduled CVS testing for the baby...the test results were supposed to be back in 14 days, and almost 5 WEEKS LATER we got the results saying the baby would have CF. When I was pregnant with my first son, and found out that I had the gene and then that my husband had the gene, I almost missed the window of opportunity to do the testing because I was so far along. Those results took almost 6 WEEKS!! With my most recent testing, the genetic counselor even had the nerve to tell me she did not know who to contact to obtain my results. HELLO!! That's her job!! I ended up calling her every day twice a day after 3 weeks, and I filed a complaint with the physician's group. Then she was supposed to fax the results to the local CF clinic. I visited them last week and she still hadn't done this, and it was supposed to be done almost 2 months ago. When I called her, she pretended she didn't remember who I was, and the FINALLY "Remembered" and said she had already sent them. The lack of professionalism and incompetance is absolutely amazing when it comes to some very sensitive, upsetting, and stressful medical information.
 
 Hang in there, hopefully it will get better, and stay on them about it...
 
 Dori CF Carrier DF508/mom to Brandon, carrier/Mom to baby Brett, who will be born with CF 8/8/08.

CFHockeyMom · May 21, 2008

Tina,

I can highly recommend UofM. Sean has been a patient there since the beginning and it is a GREAT clinic/hosptial. 4+ hours is a long drive but I think it would be worth it.

If you have any questions, don't hesitate to PM me.

CFHockeyMom · May 21, 2008

Tina,

I can highly recommend UofM. Sean has been a patient there since the beginning and it is a GREAT clinic/hosptial. 4+ hours is a long drive but I think it would be worth it.

If you have any questions, don't hesitate to PM me.

CFHockeyMom · May 21, 2008

Tina,

I can highly recommend UofM. Sean has been a patient there since the beginning and it is a GREAT clinic/hosptial. 4+ hours is a long drive but I think it would be worth it.

If you have any questions, don't hesitate to PM me.

CFHockeyMom · May 21, 2008

Tina,

I can highly recommend UofM. Sean has been a patient there since the beginning and it is a GREAT clinic/hosptial. 4+ hours is a long drive but I think it would be worth it.

If you have any questions, don't hesitate to PM me.

CFHockeyMom · May 21, 2008

Tina,
 
 I can highly recommend UofM. Sean has been a patient there since the beginning and it is a GREAT clinic/hosptial. 4+ hours is a long drive but I think it would be worth it.
 
 If you have any questions, don't hesitate to PM me.

jaazavala · May 21, 2008