I would find a different PCP because I had a experince with a PCP who thought she could handle my CF and refused to give me a referral till I was really sick, and by the time i finally got the referral and could see my cf docs, I had lost some lung function, and nobody was for sure if I would get it back. I did. BUT to make a long story short find a new PCP.
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CF check ups by Primary Care Physician
- Thread starter 2005CFmom
- Start date
I would find a different PCP because I had a experince with a PCP who thought she could handle my CF and refused to give me a referral till I was really sick, and by the time i finally got the referral and could see my cf docs, I had lost some lung function, and nobody was for sure if I would get it back. I did. BUT to make a long story short find a new PCP.
I think you're doing the right thing by not burning your bridges yet with the PCP. If he seems to be a good, knowledgeable doctor & works well along side your CF doc, then maybe 2 heads are better than one?? And maybe it could be a real pain in the butt if they don't agree on care too. <img src="i/expressions/face-icon-small-confused.gif" border="0">
I'm sure after you meet the CF team, you'll know what's the right thing to do.
As for the mist tents--I remember those. I caught staph from my older sister by crawling in bed with her & sleeping under the same tent (breathing the same recycled air)! I'm not sure if the mist tents were the best thing ever invented for CFers, that's for sure--it's probably a good thing they're not used anymore.
I'm sure after you meet the CF team, you'll know what's the right thing to do.
As for the mist tents--I remember those. I caught staph from my older sister by crawling in bed with her & sleeping under the same tent (breathing the same recycled air)! I'm not sure if the mist tents were the best thing ever invented for CFers, that's for sure--it's probably a good thing they're not used anymore.
I think you're doing the right thing by not burning your bridges yet with the PCP. If he seems to be a good, knowledgeable doctor & works well along side your CF doc, then maybe 2 heads are better than one?? And maybe it could be a real pain in the butt if they don't agree on care too. <img src="i/expressions/face-icon-small-confused.gif" border="0">
I'm sure after you meet the CF team, you'll know what's the right thing to do.
As for the mist tents--I remember those. I caught staph from my older sister by crawling in bed with her & sleeping under the same tent (breathing the same recycled air)! I'm not sure if the mist tents were the best thing ever invented for CFers, that's for sure--it's probably a good thing they're not used anymore.
I'm sure after you meet the CF team, you'll know what's the right thing to do.
As for the mist tents--I remember those. I caught staph from my older sister by crawling in bed with her & sleeping under the same tent (breathing the same recycled air)! I'm not sure if the mist tents were the best thing ever invented for CFers, that's for sure--it's probably a good thing they're not used anymore.
thelizardqueen
New member
I remember the tents, but never used one myself. As for the PCP, I would stay with him for any other unrelated problems, or go to him when you can't make it into your CF specialist. I don't see the point of going to two different docs at the same time, if the CF specialist is aggresive. If he's not aggresive, then maybe you shoudl stay with the PCP as well as backup. That being said, a specialist will know a lot more then your reg doctor.
thelizardqueen
New member
I remember the tents, but never used one myself. As for the PCP, I would stay with him for any other unrelated problems, or go to him when you can't make it into your CF specialist. I don't see the point of going to two different docs at the same time, if the CF specialist is aggresive. If he's not aggresive, then maybe you shoudl stay with the PCP as well as backup. That being said, a specialist will know a lot more then your reg doctor.
We have seen our primary pediatrician for 18 yrs-my son is 20 and yes still goes to him lol. When he first came in to the practice I was excited because he had done some training with our CF dr. Then I didnt like him because he seemed a little too know it all. But we did stick with him and he has turned out to be a good friend. We usually have only seen him for non CF stuff and just as needed. When he didnt know what the answer to something was he would get out his books or go call the CF doc and I really appreciate that. So I would give it sometime and ask why he wants the 3 mos visits- maybe he is truly interested and cares.
We have seen our primary pediatrician for 18 yrs-my son is 20 and yes still goes to him lol. When he first came in to the practice I was excited because he had done some training with our CF dr. Then I didnt like him because he seemed a little too know it all. But we did stick with him and he has turned out to be a good friend. We usually have only seen him for non CF stuff and just as needed. When he didnt know what the answer to something was he would get out his books or go call the CF doc and I really appreciate that. So I would give it sometime and ask why he wants the 3 mos visits- maybe he is truly interested and cares.
2005CFmom,
Quite honestly your doctor sounds like he's taken an interest in the CF. I don't see that it would hurt (MORE is always better than less) unless it will be for $$ for you from you for copays. If it is, explain to him that is why you don't want to be seen at both, but if he truely is that interested and wants to further his own education, maybe he'll write off your portion of the copay.
Mark was recently seen by a pulmonologist, so he was a specialist not a FP doc, but he had never had any CF patients. Mark was his first but he wanted to treat him because he was VERY interested. He made phone calls all the time to the local CF center to ask questions, veryify information... just because he was so new, but very interested in a CF case. He has since taken on 3 other CFers and they all love him.
Quite honestly your doctor sounds like he's taken an interest in the CF. I don't see that it would hurt (MORE is always better than less) unless it will be for $$ for you from you for copays. If it is, explain to him that is why you don't want to be seen at both, but if he truely is that interested and wants to further his own education, maybe he'll write off your portion of the copay.
Mark was recently seen by a pulmonologist, so he was a specialist not a FP doc, but he had never had any CF patients. Mark was his first but he wanted to treat him because he was VERY interested. He made phone calls all the time to the local CF center to ask questions, veryify information... just because he was so new, but very interested in a CF case. He has since taken on 3 other CFers and they all love him.
2005CFmom,
Quite honestly your doctor sounds like he's taken an interest in the CF. I don't see that it would hurt (MORE is always better than less) unless it will be for $$ for you from you for copays. If it is, explain to him that is why you don't want to be seen at both, but if he truely is that interested and wants to further his own education, maybe he'll write off your portion of the copay.
Mark was recently seen by a pulmonologist, so he was a specialist not a FP doc, but he had never had any CF patients. Mark was his first but he wanted to treat him because he was VERY interested. He made phone calls all the time to the local CF center to ask questions, veryify information... just because he was so new, but very interested in a CF case. He has since taken on 3 other CFers and they all love him.
Quite honestly your doctor sounds like he's taken an interest in the CF. I don't see that it would hurt (MORE is always better than less) unless it will be for $$ for you from you for copays. If it is, explain to him that is why you don't want to be seen at both, but if he truely is that interested and wants to further his own education, maybe he'll write off your portion of the copay.
Mark was recently seen by a pulmonologist, so he was a specialist not a FP doc, but he had never had any CF patients. Mark was his first but he wanted to treat him because he was VERY interested. He made phone calls all the time to the local CF center to ask questions, veryify information... just because he was so new, but very interested in a CF case. He has since taken on 3 other CFers and they all love him.
Maybe you can get the Pediatrician and the Pulmonologist to have a phone call at some point to see if they are on the same page regarding your child's treatment. We've done that once or twice when we were getting conflicting advice. We've experienced similar mild conflict between our son's CF and non-CF doctors - especially on issues of when to use antibiotics and which ones for non-CF illnesses but we're very happy with both doctors so just live with doing some mediation now and then to keep them from getting fussy about each other. As for the extra pediatrician visits, maybe just take a wait and see attitude until you've been with both of the new Drs. for awhile - you're the customer so can change your mind whenever you want if it's not working out
Maybe you can get the Pediatrician and the Pulmonologist to have a phone call at some point to see if they are on the same page regarding your child's treatment. We've done that once or twice when we were getting conflicting advice. We've experienced similar mild conflict between our son's CF and non-CF doctors - especially on issues of when to use antibiotics and which ones for non-CF illnesses but we're very happy with both doctors so just live with doing some mediation now and then to keep them from getting fussy about each other. As for the extra pediatrician visits, maybe just take a wait and see attitude until you've been with both of the new Drs. for awhile - you're the customer so can change your mind whenever you want if it's not working out
I spent alot of my childhood in a mist tent. I was born in 1973. They were terrible and I was so glad when the doctors quit using them. Instead of a direct inhale of medication...you were inside a "tent" of mist. I remember always being soaked and freezing cold all the time. I dont know how they thought that it was a good thing. With being in a moist environment you would think the bacteria would just thrive and thrive.
I only see my primary doctor once a year...unless I have a problem not CF related (not likely). I see my CF doctor every 3 months..along with an endocrinologist, rheumatologist, urologist, otolaryngologist, neurologist, and gynecologist. (Think thats all of them)
Dea
32 w/CF
I only see my primary doctor once a year...unless I have a problem not CF related (not likely). I see my CF doctor every 3 months..along with an endocrinologist, rheumatologist, urologist, otolaryngologist, neurologist, and gynecologist. (Think thats all of them)
Dea
32 w/CF
I spent alot of my childhood in a mist tent. I was born in 1973. They were terrible and I was so glad when the doctors quit using them. Instead of a direct inhale of medication...you were inside a "tent" of mist. I remember always being soaked and freezing cold all the time. I dont know how they thought that it was a good thing. With being in a moist environment you would think the bacteria would just thrive and thrive.
I only see my primary doctor once a year...unless I have a problem not CF related (not likely). I see my CF doctor every 3 months..along with an endocrinologist, rheumatologist, urologist, otolaryngologist, neurologist, and gynecologist. (Think thats all of them)
Dea
32 w/CF
I only see my primary doctor once a year...unless I have a problem not CF related (not likely). I see my CF doctor every 3 months..along with an endocrinologist, rheumatologist, urologist, otolaryngologist, neurologist, and gynecologist. (Think thats all of them)
Dea
32 w/CF
thefrogprincess
New member
THere should be no reason to go to both docs that often. THe CF clinic should send everything to the primary so that everyone is on the same page. My primary doc specializes in pulmonary care and both offices always know what the other has done.
thefrogprincess
New member
THere should be no reason to go to both docs that often. THe CF clinic should send everything to the primary so that everyone is on the same page. My primary doc specializes in pulmonary care and both offices always know what the other has done.
Caleb see's his PCP more than the cf clinic.. If he is sick and she thinks he needs a antibiotic she just calls the cf clinic and touches base with them to see what they want to do. I hate going to clinic, and so does caleb.. they make us feel like a #.. his PCP loves him to pieces and she makes him feel comfortable and more like part of her family.. we even have her home # for emergencys. If his PCP could do everything it would be great.. but in order to have all of his cf visits and meds covered we have to go to a specialist...
Melissa mom to dylan 7 no cf and caleb 4wcf
Melissa mom to dylan 7 no cf and caleb 4wcf
Caleb see's his PCP more than the cf clinic.. If he is sick and she thinks he needs a antibiotic she just calls the cf clinic and touches base with them to see what they want to do. I hate going to clinic, and so does caleb.. they make us feel like a #.. his PCP loves him to pieces and she makes him feel comfortable and more like part of her family.. we even have her home # for emergencys. If his PCP could do everything it would be great.. but in order to have all of his cf visits and meds covered we have to go to a specialist...
Melissa mom to dylan 7 no cf and caleb 4wcf
Melissa mom to dylan 7 no cf and caleb 4wcf
I was born in 1968 and spent the first couple years of my life in a mist tent related to "bronchitis" - wasn't diagnosed with CF until I was 35. I don't remember anything about this tent - just told about it from my parents. I don't believe they are used anymore and if you thought about it they probably would do more harm than good because of the potential for bacteria.
I was born in 1968 and spent the first couple years of my life in a mist tent related to "bronchitis" - wasn't diagnosed with CF until I was 35. I don't remember anything about this tent - just told about it from my parents. I don't believe they are used anymore and if you thought about it they probably would do more harm than good because of the potential for bacteria.