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Do you see a doctor that is a specific CF doctor?
- Thread starter Asexyblond23
- Start date
I only go to an accredited CF center. When I was little we had a local pediatrician (who is my daughters now BTW) who was up to date (and still is) on CF, but for anything major with CF we went to the clinic. Since being an adult I only had a local doctor for about 5 years and when he left the area I never obtained another one. SO I only deal with my CF clinic & a local neurologist for my Epilepsy.
I only go to an accredited CF center. When I was little we had a local pediatrician (who is my daughters now BTW) who was up to date (and still is) on CF, but for anything major with CF we went to the clinic. Since being an adult I only had a local doctor for about 5 years and when he left the area I never obtained another one. SO I only deal with my CF clinic & a local neurologist for my Epilepsy.
I only go to an accredited CF center. When I was little we had a local pediatrician (who is my daughters now BTW) who was up to date (and still is) on CF, but for anything major with CF we went to the clinic. Since being an adult I only had a local doctor for about 5 years and when he left the area I never obtained another one. SO I only deal with my CF clinic & a local neurologist for my Epilepsy.
coltsfan715
New member
Hey there,
Well I have seen a wide spectrum over the years.
As a ped - I saw a doc that was NOT a CF doc as per a CF Center - but he did see a good number of CF patients. I LOVED him he was awesome. I saw him until he passed away.
THEN
I started seeing a group of docs at a local CF Center. I saw them until the agfe of 21 and really like the care I got there after I had gotten all the kinks worked out and they had really tailored my care to ME - instead of just blanket care that we see on occasion at some places.
AFTER that
When I turned 21 I started seeing a pulmonologist that had seen some CF patients in the past, but he was NOT part of an accredited CF Center. I liked my care at the time, but looking back now see that there were many problems with the care that I received.
NOW
I currently go to a pulmonologist with a CF specialty at a new Accredited Adult CF Care Center in my area. I LOVE them. The doc used to work in NY at the Adult CF Care program in Albany (I am pretty sure it was Albany anyway).
For me personally I like the care that I get AT the CF Center best in comparison with a regular pulmonologist as an adult. As a ped I received great care from both an accredited center and a non accredited doc.
For me if I was NOT getting good enough care at an accredited center but knew of a doc that I trusted and had experience with CF patients in the past I would trust enough to give the doc at the non accredited center a chance.
Take Care,
Lindsey
Well I have seen a wide spectrum over the years.
As a ped - I saw a doc that was NOT a CF doc as per a CF Center - but he did see a good number of CF patients. I LOVED him he was awesome. I saw him until he passed away.
THEN
I started seeing a group of docs at a local CF Center. I saw them until the agfe of 21 and really like the care I got there after I had gotten all the kinks worked out and they had really tailored my care to ME - instead of just blanket care that we see on occasion at some places.
AFTER that
When I turned 21 I started seeing a pulmonologist that had seen some CF patients in the past, but he was NOT part of an accredited CF Center. I liked my care at the time, but looking back now see that there were many problems with the care that I received.
NOW
I currently go to a pulmonologist with a CF specialty at a new Accredited Adult CF Care Center in my area. I LOVE them. The doc used to work in NY at the Adult CF Care program in Albany (I am pretty sure it was Albany anyway).
For me personally I like the care that I get AT the CF Center best in comparison with a regular pulmonologist as an adult. As a ped I received great care from both an accredited center and a non accredited doc.
For me if I was NOT getting good enough care at an accredited center but knew of a doc that I trusted and had experience with CF patients in the past I would trust enough to give the doc at the non accredited center a chance.
Take Care,
Lindsey
coltsfan715
New member
Hey there,
Well I have seen a wide spectrum over the years.
As a ped - I saw a doc that was NOT a CF doc as per a CF Center - but he did see a good number of CF patients. I LOVED him he was awesome. I saw him until he passed away.
THEN
I started seeing a group of docs at a local CF Center. I saw them until the agfe of 21 and really like the care I got there after I had gotten all the kinks worked out and they had really tailored my care to ME - instead of just blanket care that we see on occasion at some places.
AFTER that
When I turned 21 I started seeing a pulmonologist that had seen some CF patients in the past, but he was NOT part of an accredited CF Center. I liked my care at the time, but looking back now see that there were many problems with the care that I received.
NOW
I currently go to a pulmonologist with a CF specialty at a new Accredited Adult CF Care Center in my area. I LOVE them. The doc used to work in NY at the Adult CF Care program in Albany (I am pretty sure it was Albany anyway).
For me personally I like the care that I get AT the CF Center best in comparison with a regular pulmonologist as an adult. As a ped I received great care from both an accredited center and a non accredited doc.
For me if I was NOT getting good enough care at an accredited center but knew of a doc that I trusted and had experience with CF patients in the past I would trust enough to give the doc at the non accredited center a chance.
Take Care,
Lindsey
Well I have seen a wide spectrum over the years.
As a ped - I saw a doc that was NOT a CF doc as per a CF Center - but he did see a good number of CF patients. I LOVED him he was awesome. I saw him until he passed away.
THEN
I started seeing a group of docs at a local CF Center. I saw them until the agfe of 21 and really like the care I got there after I had gotten all the kinks worked out and they had really tailored my care to ME - instead of just blanket care that we see on occasion at some places.
AFTER that
When I turned 21 I started seeing a pulmonologist that had seen some CF patients in the past, but he was NOT part of an accredited CF Center. I liked my care at the time, but looking back now see that there were many problems with the care that I received.
NOW
I currently go to a pulmonologist with a CF specialty at a new Accredited Adult CF Care Center in my area. I LOVE them. The doc used to work in NY at the Adult CF Care program in Albany (I am pretty sure it was Albany anyway).
For me personally I like the care that I get AT the CF Center best in comparison with a regular pulmonologist as an adult. As a ped I received great care from both an accredited center and a non accredited doc.
For me if I was NOT getting good enough care at an accredited center but knew of a doc that I trusted and had experience with CF patients in the past I would trust enough to give the doc at the non accredited center a chance.
Take Care,
Lindsey
coltsfan715
New member
Hey there,
Well I have seen a wide spectrum over the years.
As a ped - I saw a doc that was NOT a CF doc as per a CF Center - but he did see a good number of CF patients. I LOVED him he was awesome. I saw him until he passed away.
THEN
I started seeing a group of docs at a local CF Center. I saw them until the agfe of 21 and really like the care I got there after I had gotten all the kinks worked out and they had really tailored my care to ME - instead of just blanket care that we see on occasion at some places.
AFTER that
When I turned 21 I started seeing a pulmonologist that had seen some CF patients in the past, but he was NOT part of an accredited CF Center. I liked my care at the time, but looking back now see that there were many problems with the care that I received.
NOW
I currently go to a pulmonologist with a CF specialty at a new Accredited Adult CF Care Center in my area. I LOVE them. The doc used to work in NY at the Adult CF Care program in Albany (I am pretty sure it was Albany anyway).
For me personally I like the care that I get AT the CF Center best in comparison with a regular pulmonologist as an adult. As a ped I received great care from both an accredited center and a non accredited doc.
For me if I was NOT getting good enough care at an accredited center but knew of a doc that I trusted and had experience with CF patients in the past I would trust enough to give the doc at the non accredited center a chance.
Take Care,
Lindsey
Well I have seen a wide spectrum over the years.
As a ped - I saw a doc that was NOT a CF doc as per a CF Center - but he did see a good number of CF patients. I LOVED him he was awesome. I saw him until he passed away.
THEN
I started seeing a group of docs at a local CF Center. I saw them until the agfe of 21 and really like the care I got there after I had gotten all the kinks worked out and they had really tailored my care to ME - instead of just blanket care that we see on occasion at some places.
AFTER that
When I turned 21 I started seeing a pulmonologist that had seen some CF patients in the past, but he was NOT part of an accredited CF Center. I liked my care at the time, but looking back now see that there were many problems with the care that I received.
NOW
I currently go to a pulmonologist with a CF specialty at a new Accredited Adult CF Care Center in my area. I LOVE them. The doc used to work in NY at the Adult CF Care program in Albany (I am pretty sure it was Albany anyway).
For me personally I like the care that I get AT the CF Center best in comparison with a regular pulmonologist as an adult. As a ped I received great care from both an accredited center and a non accredited doc.
For me if I was NOT getting good enough care at an accredited center but knew of a doc that I trusted and had experience with CF patients in the past I would trust enough to give the doc at the non accredited center a chance.
Take Care,
Lindsey
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>
I liked my care at the time, but looking back now see that there were many problems with the care that I received.
</end quote></div>
can you elaborate?
as someone who has never been to a non-CF center, I would love to learn more about the problems
I liked my care at the time, but looking back now see that there were many problems with the care that I received.
</end quote></div>
can you elaborate?
as someone who has never been to a non-CF center, I would love to learn more about the problems
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>
I liked my care at the time, but looking back now see that there were many problems with the care that I received.
</end quote></div>
can you elaborate?
as someone who has never been to a non-CF center, I would love to learn more about the problems
I liked my care at the time, but looking back now see that there were many problems with the care that I received.
</end quote></div>
can you elaborate?
as someone who has never been to a non-CF center, I would love to learn more about the problems
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>
I liked my care at the time, but looking back now see that there were many problems with the care that I received.
</end quote></div>
can you elaborate?
as someone who has never been to a non-CF center, I would love to learn more about the problems
I liked my care at the time, but looking back now see that there were many problems with the care that I received.
</end quote></div>
can you elaborate?
as someone who has never been to a non-CF center, I would love to learn more about the problems
My personal experience is that my CF doc is FAR and BEYOND what a private pulmonologist group did for me and my CF. That being said I am sure there are docs that are in CF practice that are not up to par.
Just my two cents <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lori
44 w/CF
Just my two cents <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lori
44 w/CF
My personal experience is that my CF doc is FAR and BEYOND what a private pulmonologist group did for me and my CF. That being said I am sure there are docs that are in CF practice that are not up to par.
Just my two cents <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lori
44 w/CF
Just my two cents <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lori
44 w/CF
My personal experience is that my CF doc is FAR and BEYOND what a private pulmonologist group did for me and my CF. That being said I am sure there are docs that are in CF practice that are not up to par.
Just my two cents <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lori
44 w/CF
Just my two cents <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lori
44 w/CF
Asexyblond23
New member
Well the doctor that I am thinking about switching to was my Cf doctor at the Louisville CF clinic. In 2005 they stopped seeing all the adults at the clinic and made it only for kids. So there is no adult CF clinic now in louisville for adults. This doctor was a pulmoglosit and then came to the Cf center and was the adult CF doc for about 5-6 years. Now since they dont see adults anymore he has gone back to the university of louisville and is with a pulmoligoist group. We were given the choice if we wanted to follow him, but at that time it was eaiser for me to be at vandy which is 1 hour away not louisville that is 3. So he was a doctor at a CF center for 5 years he isnt just a normal pulmoniolisgt. I am just wondering if people have gone to doctors that know CF like this one does but are not at a CF center.
Asexyblond23
New member
Well the doctor that I am thinking about switching to was my Cf doctor at the Louisville CF clinic. In 2005 they stopped seeing all the adults at the clinic and made it only for kids. So there is no adult CF clinic now in louisville for adults. This doctor was a pulmoglosit and then came to the Cf center and was the adult CF doc for about 5-6 years. Now since they dont see adults anymore he has gone back to the university of louisville and is with a pulmoligoist group. We were given the choice if we wanted to follow him, but at that time it was eaiser for me to be at vandy which is 1 hour away not louisville that is 3. So he was a doctor at a CF center for 5 years he isnt just a normal pulmoniolisgt. I am just wondering if people have gone to doctors that know CF like this one does but are not at a CF center.
Asexyblond23
New member
Well the doctor that I am thinking about switching to was my Cf doctor at the Louisville CF clinic. In 2005 they stopped seeing all the adults at the clinic and made it only for kids. So there is no adult CF clinic now in louisville for adults. This doctor was a pulmoglosit and then came to the Cf center and was the adult CF doc for about 5-6 years. Now since they dont see adults anymore he has gone back to the university of louisville and is with a pulmoligoist group. We were given the choice if we wanted to follow him, but at that time it was eaiser for me to be at vandy which is 1 hour away not louisville that is 3. So he was a doctor at a CF center for 5 years he isnt just a normal pulmoniolisgt. I am just wondering if people have gone to doctors that know CF like this one does but are not at a CF center.
6
65rosessamurai
Guest
I've had at least two doctors during my time in the states.
I had the family doctor, which was probably due to the range of the insurance coverage, and the CF specialist, who was at a Childrens Hospital, and may had some parts that were within the range of the insurance.
I believe I was at Childrens til I was 21, because I remember being old enough to drive myself a few times, and when I was doing PFT's the machine was actually TOO SMALL for me!
I was referred to a CF clinic for adults--a new concept back then--and I still had my family doctor, who knew about CF. Fortunately, the two hospitals where the CF and family doc were at happened to merge, so I was essentially seeing two docs at the same hospital. They were both pretty good, and my family doc seemed more strict than the CF doc did...the family doc even chewed me out when I dehydrated after practicing my karate in 95 degree weather!
Of course now, there is no such thing as a CF specialist in Japan, or if there is I'd probably have to go to Tokyo for an appointment.
I had the family doctor, which was probably due to the range of the insurance coverage, and the CF specialist, who was at a Childrens Hospital, and may had some parts that were within the range of the insurance.
I believe I was at Childrens til I was 21, because I remember being old enough to drive myself a few times, and when I was doing PFT's the machine was actually TOO SMALL for me!
I was referred to a CF clinic for adults--a new concept back then--and I still had my family doctor, who knew about CF. Fortunately, the two hospitals where the CF and family doc were at happened to merge, so I was essentially seeing two docs at the same hospital. They were both pretty good, and my family doc seemed more strict than the CF doc did...the family doc even chewed me out when I dehydrated after practicing my karate in 95 degree weather!
Of course now, there is no such thing as a CF specialist in Japan, or if there is I'd probably have to go to Tokyo for an appointment.
6
65rosessamurai
Guest
I've had at least two doctors during my time in the states.
I had the family doctor, which was probably due to the range of the insurance coverage, and the CF specialist, who was at a Childrens Hospital, and may had some parts that were within the range of the insurance.
I believe I was at Childrens til I was 21, because I remember being old enough to drive myself a few times, and when I was doing PFT's the machine was actually TOO SMALL for me!
I was referred to a CF clinic for adults--a new concept back then--and I still had my family doctor, who knew about CF. Fortunately, the two hospitals where the CF and family doc were at happened to merge, so I was essentially seeing two docs at the same hospital. They were both pretty good, and my family doc seemed more strict than the CF doc did...the family doc even chewed me out when I dehydrated after practicing my karate in 95 degree weather!
Of course now, there is no such thing as a CF specialist in Japan, or if there is I'd probably have to go to Tokyo for an appointment.
I had the family doctor, which was probably due to the range of the insurance coverage, and the CF specialist, who was at a Childrens Hospital, and may had some parts that were within the range of the insurance.
I believe I was at Childrens til I was 21, because I remember being old enough to drive myself a few times, and when I was doing PFT's the machine was actually TOO SMALL for me!
I was referred to a CF clinic for adults--a new concept back then--and I still had my family doctor, who knew about CF. Fortunately, the two hospitals where the CF and family doc were at happened to merge, so I was essentially seeing two docs at the same hospital. They were both pretty good, and my family doc seemed more strict than the CF doc did...the family doc even chewed me out when I dehydrated after practicing my karate in 95 degree weather!
Of course now, there is no such thing as a CF specialist in Japan, or if there is I'd probably have to go to Tokyo for an appointment.
6
65rosessamurai
Guest
I've had at least two doctors during my time in the states.
I had the family doctor, which was probably due to the range of the insurance coverage, and the CF specialist, who was at a Childrens Hospital, and may had some parts that were within the range of the insurance.
I believe I was at Childrens til I was 21, because I remember being old enough to drive myself a few times, and when I was doing PFT's the machine was actually TOO SMALL for me!
I was referred to a CF clinic for adults--a new concept back then--and I still had my family doctor, who knew about CF. Fortunately, the two hospitals where the CF and family doc were at happened to merge, so I was essentially seeing two docs at the same hospital. They were both pretty good, and my family doc seemed more strict than the CF doc did...the family doc even chewed me out when I dehydrated after practicing my karate in 95 degree weather!
Of course now, there is no such thing as a CF specialist in Japan, or if there is I'd probably have to go to Tokyo for an appointment.
I had the family doctor, which was probably due to the range of the insurance coverage, and the CF specialist, who was at a Childrens Hospital, and may had some parts that were within the range of the insurance.
I believe I was at Childrens til I was 21, because I remember being old enough to drive myself a few times, and when I was doing PFT's the machine was actually TOO SMALL for me!
I was referred to a CF clinic for adults--a new concept back then--and I still had my family doctor, who knew about CF. Fortunately, the two hospitals where the CF and family doc were at happened to merge, so I was essentially seeing two docs at the same hospital. They were both pretty good, and my family doc seemed more strict than the CF doc did...the family doc even chewed me out when I dehydrated after practicing my karate in 95 degree weather!
Of course now, there is no such thing as a CF specialist in Japan, or if there is I'd probably have to go to Tokyo for an appointment.
I was diagnosed by a pulminologist that was not at a clinic and was not a CF specialist. He even told me as much but I kept seeing him since he diagnosed me. After a year of gettting worse I found out about the Oklahoma City CF clinic. I liked them much better (especially Debbie Berry, the RN) but after a couple of years I moved to Springfield, Missouri.
There is not a CF clinic here in Springfield, but there is a group that comes down once a month from the clinic in Columbia. I went to them a couple of times, but didn't like them, so I started going to Dr. Carey in Tulsa, OK (2.5 hours away). He's my favorite by far. He's really agressive and has me feeling better than I've felt since before I was diagnosed.
So bottom line, I think it has way more to do with the individual doctor than whether or not they are an official CF clinic. The 3 clinics I've dealt with are completely different, and it took me a while to settle on one I'm happy with. If the doctor you're considering seeing understands how CF needs to be treated, then go for it. Believe me, you won't mind the extra commute if you are happier witht the care you are recieving.
A tip: If you don't already have satellite radio, get it. It makes the drive fly by!
There is not a CF clinic here in Springfield, but there is a group that comes down once a month from the clinic in Columbia. I went to them a couple of times, but didn't like them, so I started going to Dr. Carey in Tulsa, OK (2.5 hours away). He's my favorite by far. He's really agressive and has me feeling better than I've felt since before I was diagnosed.
So bottom line, I think it has way more to do with the individual doctor than whether or not they are an official CF clinic. The 3 clinics I've dealt with are completely different, and it took me a while to settle on one I'm happy with. If the doctor you're considering seeing understands how CF needs to be treated, then go for it. Believe me, you won't mind the extra commute if you are happier witht the care you are recieving.
A tip: If you don't already have satellite radio, get it. It makes the drive fly by!