Newly Diagnosed

T

tleigh

New member
Donna,<br>
Welcome-even though you got here through not so ideal
circumstances, please understand that there is so much hope out
there for us CF'ers.  Be willing to ask your docs about other
options.  Sometimes it takes a little bit for them and you to
understand how your lungs react.  For instance, I have very
reactive airways-so sometimes when I get a drop in #'s it could be
a bug I'm fighting or it could be an asthma flare-up.  Hang in
there-keep on keeping on-it does pay off!
 
K

kayleesgrandma

New member
I'd like to add a welcome also, but it is truly under trying circumstances for you to meet us all here. It is a great family you will become blended with. Best of all, when you have questions, you will get the best of answers. Plenty of people have been, or are going through what you are going through. You are not alone--that is the best part. Come here often, and come as you are.. . .
 
K

kayleesgrandma

New member
I'd like to add a welcome also, but it is truly under trying circumstances for you to meet us all here. It is a great family you will become blended with. Best of all, when you have questions, you will get the best of answers. Plenty of people have been, or are going through what you are going through. You are not alone--that is the best part. Come here often, and come as you are.. . .
 
K

kayleesgrandma

New member
I'd like to add a welcome also, but it is truly under trying circumstances for you to meet us all here. It is a great family you will become blended with. Best of all, when you have questions, you will get the best of answers. Plenty of people have been, or are going through what you are going through. You are not alone--that is the best part. Come here often, and come as you are.. . .
 
S

sweetwhite30

New member
I just want to add you always must ask tons of questions to your doctor ,and continuely ask about clinical trials their are more open doors to the older cfers out there then the young children. they have alot of clinical trials going on for new drugs and therapies which are proven very hopful but unfortunuately they are not available to children under 5 yrs of age....they have a clinical trial going on right now in birmingham alabama which is proving to have fantasitc result but it will be another 3 yrs before it even gets to the final stages where my son will be participating . They have all the lastest news ,meaning the doctors on the trials going on in your local state but there are tons sof different things going on in trials and different trials in different states. not many know these things but i am a question person ask where how and why to everything and this has put me to make others aware that ask them doctors they have clinical trial knowledge on where they are going on before they hit the web ,which can be 2 yrs before being posted to the web and doctors have the upper hand on getting you approved for these trials...... I am sorry it took them so long to diagnose you with c.f but now that they have you have alot of hope on your side. It is always up and down in the beginning when being diagnosed with c.f but it does even out after the meds and stuff ggo to work and do their job..Just hang in there,it will get better ...
 
S

sweetwhite30

New member
I just want to add you always must ask tons of questions to your doctor ,and continuely ask about clinical trials their are more open doors to the older cfers out there then the young children. they have alot of clinical trials going on for new drugs and therapies which are proven very hopful but unfortunuately they are not available to children under 5 yrs of age....they have a clinical trial going on right now in birmingham alabama which is proving to have fantasitc result but it will be another 3 yrs before it even gets to the final stages where my son will be participating . They have all the lastest news ,meaning the doctors on the trials going on in your local state but there are tons sof different things going on in trials and different trials in different states. not many know these things but i am a question person ask where how and why to everything and this has put me to make others aware that ask them doctors they have clinical trial knowledge on where they are going on before they hit the web ,which can be 2 yrs before being posted to the web and doctors have the upper hand on getting you approved for these trials...... I am sorry it took them so long to diagnose you with c.f but now that they have you have alot of hope on your side. It is always up and down in the beginning when being diagnosed with c.f but it does even out after the meds and stuff ggo to work and do their job..Just hang in there,it will get better ...
 
S

sweetwhite30

New member
I just want to add you always must ask tons of questions to your doctor ,and continuely ask about clinical trials their are more open doors to the older cfers out there then the young children. they have alot of clinical trials going on for new drugs and therapies which are proven very hopful but unfortunuately they are not available to children under 5 yrs of age....they have a clinical trial going on right now in birmingham alabama which is proving to have fantasitc result but it will be another 3 yrs before it even gets to the final stages where my son will be participating . They have all the lastest news ,meaning the doctors on the trials going on in your local state but there are tons sof different things going on in trials and different trials in different states. not many know these things but i am a question person ask where how and why to everything and this has put me to make others aware that ask them doctors they have clinical trial knowledge on where they are going on before they hit the web ,which can be 2 yrs before being posted to the web and doctors have the upper hand on getting you approved for these trials...... I am sorry it took them so long to diagnose you with c.f but now that they have you have alot of hope on your side. It is always up and down in the beginning when being diagnosed with c.f but it does even out after the meds and stuff ggo to work and do their job..Just hang in there,it will get better ...
 
D

donnadee

New member
I just wanted to thank you for the info. I go to the clinic in Nashville, TN tomorrow. I am hoping my PFT's have improved a little, but it doesn't feel like they have, they are also testing me for diabetes, so hopefully I will have some good news on that. It is my B-Day tomorrow and I'm hoping I get good news all around.....
 
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donnadee

New member
I just wanted to thank you for the info. I go to the clinic in Nashville, TN tomorrow. I am hoping my PFT's have improved a little, but it doesn't feel like they have, they are also testing me for diabetes, so hopefully I will have some good news on that. It is my B-Day tomorrow and I'm hoping I get good news all around.....
 
D

donnadee

New member
I just wanted to thank you for the info. I go to the clinic in Nashville, TN tomorrow. I am hoping my PFT's have improved a little, but it doesn't feel like they have, they are also testing me for diabetes, so hopefully I will have some good news on that. It is my B-Day tomorrow and I'm hoping I get good news all around.....
 
A

anonymous

New member
Donna
Hello my name is Chuck and I live here in Knoxville. I also have a little girl Avery who has CF. I believe you work with my mom Janet Myers. If you have any questions give me a call @ work 865 525 6756; I also am a medical sales rep for pulmonary patients such as CF. I know you were looking for a pulm. Dr here in town; I can recommend a few that are great. Sorry if this is sloppy: I'M doing it on my phone. Also get in touch w/the CF office on Kingston Pike Ashley and Mike would love to help out.
 
A

anonymous

New member
Donna
Hello my name is Chuck and I live here in Knoxville. I also have a little girl Avery who has CF. I believe you work with my mom Janet Myers. If you have any questions give me a call @ work 865 525 6756; I also am a medical sales rep for pulmonary patients such as CF. I know you were looking for a pulm. Dr here in town; I can recommend a few that are great. Sorry if this is sloppy: I'M doing it on my phone. Also get in touch w/the CF office on Kingston Pike Ashley and Mike would love to help out.
 
A

anonymous

New member
Donna
Hello my name is Chuck and I live here in Knoxville. I also have a little girl Avery who has CF. I believe you work with my mom Janet Myers. If you have any questions give me a call @ work 865 525 6756; I also am a medical sales rep for pulmonary patients such as CF. I know you were looking for a pulm. Dr here in town; I can recommend a few that are great. Sorry if this is sloppy: I'M doing it on my phone. Also get in touch w/the CF office on Kingston Pike Ashley and Mike would love to help out.
 
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donnadee

New member
Hey Chuck, Thanks for your responce. Janet just told me that you had replyed to me...Sorry it took a while to respond, I was in the hospital again. Thanks for the info, I did not know there was a CF center in Knoxville, I will defintley get in touch with them. Do you know anything about a DR named Maria Schriver?
 
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donnadee

New member
Hey Chuck, Thanks for your responce. Janet just told me that you had replyed to me...Sorry it took a while to respond, I was in the hospital again. Thanks for the info, I did not know there was a CF center in Knoxville, I will defintley get in touch with them. Do you know anything about a DR named Maria Schriver?
 
D

donnadee

New member
Hey Chuck, Thanks for your responce. Janet just told me that you had replyed to me...Sorry it took a while to respond, I was in the hospital again. Thanks for the info, I did not know there was a CF center in Knoxville, I will defintley get in touch with them. Do you know anything about a DR named Maria Schriver?
 
L

lflatford

New member
Dr. Elsie Schriver @ Knoxville pulmonary group is excellent. I spoke with her the other day and she was saying it may be the first of the year before any of the Drs take on any new patients. If you cannot get with her Dr. Kevin Martinolich is a good one as well In the same office. I hope your doing well now. If I can be of help just give a call or contact mom if you have any questions.

Chuck father to Avery 3 yrs. old double Delta F508/Angel
Rhett 2 yrs . carrier Future Tennessee Vol
 
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