CF living in Kentucky

ViviansMom

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Would like to find other famies in Kentucky with CF children. In my erea , southeastern Ky, there is around 14 with CF.
 

ViviansMom

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Would like to find other famies in Kentucky with CF children. In my erea , southeastern Ky, there is around 14 with CF.
 

ViviansMom

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Would like to find other famies in Kentucky with CF children. In my erea , southeastern Ky, there is around 14 with CF.
 

purplemartin

New member
Hi there, fellow kentuckian here! We live in Paducah, which is western KY. My son attends CF clinic at Vanderbilt Children's Hospital in Nashville, TN. Around this area we only have, well known, about 12 cases of CF. This is of course covering the whole Jackson Purchase area in KY. Glad to finally see another kentuckian on the forums. By the way, wht city do you live in? What clinic does your daughter attend? Louisville......Lexington.....?
 

purplemartin

New member
Hi there, fellow kentuckian here! We live in Paducah, which is western KY. My son attends CF clinic at Vanderbilt Children's Hospital in Nashville, TN. Around this area we only have, well known, about 12 cases of CF. This is of course covering the whole Jackson Purchase area in KY. Glad to finally see another kentuckian on the forums. By the way, wht city do you live in? What clinic does your daughter attend? Louisville......Lexington.....?
 

purplemartin

New member
Hi there, fellow kentuckian here! We live in Paducah, which is western KY. My son attends CF clinic at Vanderbilt Children's Hospital in Nashville, TN. Around this area we only have, well known, about 12 cases of CF. This is of course covering the whole Jackson Purchase area in KY. Glad to finally see another kentuckian on the forums. By the way, wht city do you live in? What clinic does your daughter attend? Louisville......Lexington.....?
 

ViviansMom

New member
Hi ya ,
I'm from Pikeville, that's the very last county in eastern KY before going in to VA. or WVA. We go to the Lexington UK CF clinic. Vivian was born at U. K. because I knew before she was born that she was CF.

I have found that if you live in an area where there are a lot of people that has European descendent then the number of CF patients tend to be higher and here where I live there are a lot of Irish/Scottish descentents, me being one of them. In my research I have found that there are about 419 cases of CF in Kentucky. That was one of the big factors that got Kentucky to add CF screening on the mandatory infant screening list also last year my daughter and I received a decree from Governor Fletcher declaring May Kentucky Cystic Fibrosis awareness month, and May is also National and internation CF Awareness month.
 

ViviansMom

New member
Hi ya ,
I'm from Pikeville, that's the very last county in eastern KY before going in to VA. or WVA. We go to the Lexington UK CF clinic. Vivian was born at U. K. because I knew before she was born that she was CF.

I have found that if you live in an area where there are a lot of people that has European descendent then the number of CF patients tend to be higher and here where I live there are a lot of Irish/Scottish descentents, me being one of them. In my research I have found that there are about 419 cases of CF in Kentucky. That was one of the big factors that got Kentucky to add CF screening on the mandatory infant screening list also last year my daughter and I received a decree from Governor Fletcher declaring May Kentucky Cystic Fibrosis awareness month, and May is also National and internation CF Awareness month.
 

ViviansMom

New member
Hi ya ,
I'm from Pikeville, that's the very last county in eastern KY before going in to VA. or WVA. We go to the Lexington UK CF clinic. Vivian was born at U. K. because I knew before she was born that she was CF.

I have found that if you live in an area where there are a lot of people that has European descendent then the number of CF patients tend to be higher and here where I live there are a lot of Irish/Scottish descentents, me being one of them. In my research I have found that there are about 419 cases of CF in Kentucky. That was one of the big factors that got Kentucky to add CF screening on the mandatory infant screening list also last year my daughter and I received a decree from Governor Fletcher declaring May Kentucky Cystic Fibrosis awareness month, and May is also National and internation CF Awareness month.
 

purplemartin

New member
Yep, familiar with Pikeville. My husband works for Bellsouth/AT&T and the "Pioneers" have a family weekend event up that way once a year. We really enjoy the drive as the scenery is beautiful in most parts.
How do you like the clinic in Lexington? We struggled with our choices-Lexington, Louisville, or Vanderbilt. We ended up choosing Vanderbilt due to the distance and also per recommendation of my son's ped. We have a great relationship with the staff and don't really have any complaints with his care. I have thought about getting a second opinion on his care though. Really just wanting to see the difference in care and thought about going to the Louisville clinic????? Any thoughts on the Louisville clinic?
 

purplemartin

New member
Yep, familiar with Pikeville. My husband works for Bellsouth/AT&T and the "Pioneers" have a family weekend event up that way once a year. We really enjoy the drive as the scenery is beautiful in most parts.
How do you like the clinic in Lexington? We struggled with our choices-Lexington, Louisville, or Vanderbilt. We ended up choosing Vanderbilt due to the distance and also per recommendation of my son's ped. We have a great relationship with the staff and don't really have any complaints with his care. I have thought about getting a second opinion on his care though. Really just wanting to see the difference in care and thought about going to the Louisville clinic????? Any thoughts on the Louisville clinic?
 

purplemartin

New member
Yep, familiar with Pikeville. My husband works for Bellsouth/AT&T and the "Pioneers" have a family weekend event up that way once a year. We really enjoy the drive as the scenery is beautiful in most parts.
How do you like the clinic in Lexington? We struggled with our choices-Lexington, Louisville, or Vanderbilt. We ended up choosing Vanderbilt due to the distance and also per recommendation of my son's ped. We have a great relationship with the staff and don't really have any complaints with his care. I have thought about getting a second opinion on his care though. Really just wanting to see the difference in care and thought about going to the Louisville clinic????? Any thoughts on the Louisville clinic?
 

ViviansMom

New member
Thank you I love the mountains here. I can't say enough about the Lexington clinic; they are wonderful. I first meet Vivian's doctor before she was born and then in the delivery room he got to hold her before I did. Him and Vivian has a very close connection she was his first at birth CF patient. The whole staff there are like family I have all the trust in the world in them. Enough trust that in May we will inter the Tiger-1 study, we were invited our last visit. Have you heard of this one if so what's your intake on it?
Carol
 

ViviansMom

New member
Thank you I love the mountains here. I can't say enough about the Lexington clinic; they are wonderful. I first meet Vivian's doctor before she was born and then in the delivery room he got to hold her before I did. Him and Vivian has a very close connection she was his first at birth CF patient. The whole staff there are like family I have all the trust in the world in them. Enough trust that in May we will inter the Tiger-1 study, we were invited our last visit. Have you heard of this one if so what's your intake on it?
Carol
 

ViviansMom

New member
Thank you I love the mountains here. I can't say enough about the Lexington clinic; they are wonderful. I first meet Vivian's doctor before she was born and then in the delivery room he got to hold her before I did. Him and Vivian has a very close connection she was his first at birth CF patient. The whole staff there are like family I have all the trust in the world in them. Enough trust that in May we will inter the Tiger-1 study, we were invited our last visit. Have you heard of this one if so what's your intake on it?
Carol
 

Samsmom

New member
Wow!!! I'm so excited to hear of families in the Bluegrass state. I live in Bardstown, KY. That is about 50 miles southeast of Louisville. I have been to Paducah and Pikeville. Small world. I have a daughter with cf, Samantha, who is 13. We go to clinic in Louisville at Kosair Children's Hospital. This is still pretty new to us, she was diagnosed just last year. Maybe we can chat some time!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Samsmom

New member
Wow!!! I'm so excited to hear of families in the Bluegrass state. I live in Bardstown, KY. That is about 50 miles southeast of Louisville. I have been to Paducah and Pikeville. Small world. I have a daughter with cf, Samantha, who is 13. We go to clinic in Louisville at Kosair Children's Hospital. This is still pretty new to us, she was diagnosed just last year. Maybe we can chat some time!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Samsmom

New member
Wow!!! I'm so excited to hear of families in the Bluegrass state. I live in Bardstown, KY. That is about 50 miles southeast of Louisville. I have been to Paducah and Pikeville. Small world. I have a daughter with cf, Samantha, who is 13. We go to clinic in Louisville at Kosair Children's Hospital. This is still pretty new to us, she was diagnosed just last year. Maybe we can chat some time!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Sakem

New member
Louisville rate high in their statistics on the Cystic Fibrosis website, I would like to hear how the staff is with the patients.
 

Sakem

New member
Louisville rate high in their statistics on the Cystic Fibrosis website, I would like to hear how the staff is with the patients.
 
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