Non-accredited CF care

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saveferris2009

New member
I am curious how many received their CF care from a pulmo that isn't a part of an accredited CF center?
Do you feel you are getting the most up to date care? What prompted you to go out of the CF Center circle?
I would have never considered a non-accredited center, but lately my center has really gone down hill - huge increase of patients, loss of empathy by staff, many, many mistakes being made.
I live in an area where there are 3 major hospitals, all are well respected. Only 1 of the 3 has an adult CF Center, but I know the other 2 see CF patients. I don't see the situation at my current CF Center improving (I have been patient the past 1.5-2 years) and I want to explore my options.
Any thoughts from those who have done this are appreciated. Thanks! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
I am curious how many received their CF care from a pulmo that isn't a part of an accredited CF center?
Do you feel you are getting the most up to date care? What prompted you to go out of the CF Center circle?
I would have never considered a non-accredited center, but lately my center has really gone down hill - huge increase of patients, loss of empathy by staff, many, many mistakes being made.
I live in an area where there are 3 major hospitals, all are well respected. Only 1 of the 3 has an adult CF Center, but I know the other 2 see CF patients. I don't see the situation at my current CF Center improving (I have been patient the past 1.5-2 years) and I want to explore my options.
Any thoughts from those who have done this are appreciated. Thanks! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Ratatosk

Administrator
Staff member
DS goes to an infectious disease peds specialist for his primary cf care. He's been treating CF patients for a LONG time. We met at a Children's Hospital in the City when DS was recovering from surgery due to meconium illeus. Very agressive, proactive. We'd hoped to find decent care when we got back home after 6 weeks in the NICU; however, were shocked by the cf care or should I say LACK of care and remained with him as our primary physician.

Our first local cf clinic appointment the pulmo told us we didn't need to be doing CPT and nebs because great strides have been made in lung transplantation. The GI specialist criticized us for extra calorie formula. And when DS had bronchitis at 2-3 months old, we were told "they cough, it's what they do". Asking for certain tests, synagis shots for RSV...We were told it was too expensive.

So we travel to the City a few times a year for clinic appointments, lung scans -- most recently a referral to an ENT familiar wcf. It would be nice if we could find someone locally; however, our current doctor is only a phone call away, is usually able to handle questions or concerns over the phone.
 
R

Ratatosk

Administrator
Staff member
DS goes to an infectious disease peds specialist for his primary cf care. He's been treating CF patients for a LONG time. We met at a Children's Hospital in the City when DS was recovering from surgery due to meconium illeus. Very agressive, proactive. We'd hoped to find decent care when we got back home after 6 weeks in the NICU; however, were shocked by the cf care or should I say LACK of care and remained with him as our primary physician.

Our first local cf clinic appointment the pulmo told us we didn't need to be doing CPT and nebs because great strides have been made in lung transplantation. The GI specialist criticized us for extra calorie formula. And when DS had bronchitis at 2-3 months old, we were told "they cough, it's what they do". Asking for certain tests, synagis shots for RSV...We were told it was too expensive.

So we travel to the City a few times a year for clinic appointments, lung scans -- most recently a referral to an ENT familiar wcf. It would be nice if we could find someone locally; however, our current doctor is only a phone call away, is usually able to handle questions or concerns over the phone.
 
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mamaScarlett

Active member
I would only consider a non-acred clinic if they were totally onboard with staying on top of the most up to date info, taking cues from me, (a facet of the cf patient/doc relationship that is very unique to cf), and also working with cf doctors from time to time.
I go to an acredited center, in NYC. But our family owns a vacation home in the FL Keys and the closest Cf center is a 3 hr drive away in Miami. So, while in the Keys, I have a local pulmonologist who happily works with my cf center in NYC. They confer about everything. I think it takes a pulmonologist who has their ego in check, and is willing to think outside the box.
 
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mamaScarlett

Active member
I would only consider a non-acred clinic if they were totally onboard with staying on top of the most up to date info, taking cues from me, (a facet of the cf patient/doc relationship that is very unique to cf), and also working with cf doctors from time to time.
I go to an acredited center, in NYC. But our family owns a vacation home in the FL Keys and the closest Cf center is a 3 hr drive away in Miami. So, while in the Keys, I have a local pulmonologist who happily works with my cf center in NYC. They confer about everything. I think it takes a pulmonologist who has their ego in check, and is willing to think outside the box.
 
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musclemania70

New member
When I lived in CA, I was initially seen at Long Beach Memorial. From my experience, I do not believe the dr was fully in tune with CF Care 100% the way I thought he should be. At the time, he had another practice and CF was secondary -which to me equates to 'not great care'. The nurse there was awesome though. I decided to leave and go to USC. Dr R and Debbie were much more on top of their game and stressed the importance of following all guidelines and finding the best way to treat me. I felt like they were doing their job the best they knew how. When I left USC in Jan 2007, I was sad to go. I don't know what has transpired since then. I would say to start searching if you do not feel that they are giving 100% to your care. I have never been to a non-accredited center but I am hopeful you could find an excellent doctor who is willing to work with you and give you great CF care. In addition, I lived in KC for a year and half and commuted to St Louis University hospital which was a 3.5 hour commute just to go to a doctor who I felt gave far superior care than the doctor locally. That was 3.5 hours for clinic visits and hospitalizations. Her name was Dr Kleinhenz and she was amazing (I believe she is in SF now). That being said--- go the distance if you need to. It may sound crazy to others but you need to go where you feel the dr's give a da** and are willing to give 100% effort. Good luck.
 
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musclemania70

New member
When I lived in CA, I was initially seen at Long Beach Memorial. From my experience, I do not believe the dr was fully in tune with CF Care 100% the way I thought he should be. At the time, he had another practice and CF was secondary -which to me equates to 'not great care'. The nurse there was awesome though. I decided to leave and go to USC. Dr R and Debbie were much more on top of their game and stressed the importance of following all guidelines and finding the best way to treat me. I felt like they were doing their job the best they knew how. When I left USC in Jan 2007, I was sad to go. I don't know what has transpired since then. I would say to start searching if you do not feel that they are giving 100% to your care. I have never been to a non-accredited center but I am hopeful you could find an excellent doctor who is willing to work with you and give you great CF care. In addition, I lived in KC for a year and half and commuted to St Louis University hospital which was a 3.5 hour commute just to go to a doctor who I felt gave far superior care than the doctor locally. That was 3.5 hours for clinic visits and hospitalizations. Her name was Dr Kleinhenz and she was amazing (I believe she is in SF now). That being said--- go the distance if you need to. It may sound crazy to others but you need to go where you feel the dr's give a da** and are willing to give 100% effort. Good luck.
 
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imported_Momto2

New member
Until I was 36 years old, I never put a foot in a CF center. Too scared of picking up a bug. Then I heard that they were taking MUCH better precautions regarding this issue, and started going to a center. (I also wanted an established relationship with some place should I need a transplant) Frankly, they havent done anything that I wouldnt have done on my own with my pulmonologist, but they are very nice. I consider it my job to be on top of things since I gotta live in this body and they dont. : )
 
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imported_Momto2

New member
Until I was 36 years old, I never put a foot in a CF center. Too scared of picking up a bug. Then I heard that they were taking MUCH better precautions regarding this issue, and started going to a center. (I also wanted an established relationship with some place should I need a transplant) Frankly, they havent done anything that I wouldnt have done on my own with my pulmonologist, but they are very nice. I consider it my job to be on top of things since I gotta live in this body and they dont. : )
 
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Jana

New member
My insurance is with Kaiser, so I have a pulmonary doctor and an ID doctor who work together to care for me. They really are wonderful. They listen to me, respond quickly when I need them, and stay on top of things with cf. I'm really happy with my care.
 
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Jana

New member
My insurance is with Kaiser, so I have a pulmonary doctor and an ID doctor who work together to care for me. They really are wonderful. They listen to me, respond quickly when I need them, and stay on top of things with cf. I'm really happy with my care.
 
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Jana

New member
Oh, I should add there's a local hospital with a pediatric cf clinic and a transplant center. While my doctors aren't part of the cf team, being hospitalized there means I have respiratory therapists and nurses who are used to dealing with cf patients.
 
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Jana

New member
Oh, I should add there's a local hospital with a pediatric cf clinic and a transplant center. While my doctors aren't part of the cf team, being hospitalized there means I have respiratory therapists and nurses who are used to dealing with cf patients.
 
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