Favorite CF clinic/CF doctors

ldenkers · Apr 19, 2010

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src="i/expressions/face-icon-small-sad.gif" border="0"> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?

ldenkers · Apr 19, 2010

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src="i/expressions/face-icon-small-sad.gif" border="0"> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?

ldenkers · Apr 19, 2010

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src="i/expressions/face-icon-small-sad.gif" border="0"> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?

ldenkers · Apr 19, 2010

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src="i/expressions/face-icon-small-sad.gif" border="0"> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?

ldenkers · Apr 19, 2010

I am sure everyone has good and bad experiences!
 
 Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src="i/expressions/face-icon-small-sad.gif" border="0"> Turns out they are pancreatic sufficient and don't even need them!
 
 Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.
 
 Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?

bethylove · Apr 19, 2010

Rhode Island Children's CF Clinic - Pretty decent up until a certain point in time, when the head CF doc left and another pulmonologist stepped up. I couldn't stand her and the way she treated her patients, so I ended up switching over to the Adult CF doc, who is a private practicing pulmonologist/cardiologist and did "cf" in his "spare time". I had never been anywhere else so I thought the adult cf doctor was an improvement from the pedi. until one time I REALLY needed to go into the hospital and I asked to be admitted and they said "NO"!!!! And put me on cipro --which I'm only partially tolerant of (wrong terminology! but my bugs aren't totally killed by cipro only somewhat). Fast forward 1.5 months later, and I end up in the ER, where AGAIN he wanted to send me home on CIPRO --which I had just finished 2 weeks of. So I made a huge stink and they admitted me. They didn't perform one single PFT the whole time I was there.(Not even when they 'decided' I was well enough to leave) I saw some regular pulmonolgist for some unknown reason, the service was horrible, I wasn't on any of the correct drugs. It was a nightmare. Luckily I moved right after that so I never have to seem them again! Phew.

Virginia Commonwealth University Medical Center (VCU/MCV in Richmond) Pediatric CF Clinic: AWESOME!!! I cannot say enough GOOD things about this clinic, and their doctors! I didn't realize how terrible my previous clinic/doctors were until I moved to this clinic. Doctors take your concerns seriously, talk about ALL options before taking the action of the best option for YOU (not just the 'easiest' for them) they care about their patients and are genuinely good people. They are very involved in keeping you healthy and learning all they can about this disease. Any new information or tidbit they pick up from conferences they pass on to their patients. (The only pet peeve I have is the nutritionist, she's not very helpful, but most nutritionist I find aren't that helpful anyway.) Also, in general my hospitalizations with them have gone extremely well! They are very accommodating, caring, supportive, and are always on their toes.

bethylove · Apr 19, 2010

Rhode Island Children's CF Clinic - Pretty decent up until a certain point in time, when the head CF doc left and another pulmonologist stepped up. I couldn't stand her and the way she treated her patients, so I ended up switching over to the Adult CF doc, who is a private practicing pulmonologist/cardiologist and did "cf" in his "spare time". I had never been anywhere else so I thought the adult cf doctor was an improvement from the pedi. until one time I REALLY needed to go into the hospital and I asked to be admitted and they said "NO"!!!! And put me on cipro --which I'm only partially tolerant of (wrong terminology! but my bugs aren't totally killed by cipro only somewhat). Fast forward 1.5 months later, and I end up in the ER, where AGAIN he wanted to send me home on CIPRO --which I had just finished 2 weeks of. So I made a huge stink and they admitted me. They didn't perform one single PFT the whole time I was there.(Not even when they 'decided' I was well enough to leave) I saw some regular pulmonolgist for some unknown reason, the service was horrible, I wasn't on any of the correct drugs. It was a nightmare. Luckily I moved right after that so I never have to seem them again! Phew.

Virginia Commonwealth University Medical Center (VCU/MCV in Richmond) Pediatric CF Clinic: AWESOME!!! I cannot say enough GOOD things about this clinic, and their doctors! I didn't realize how terrible my previous clinic/doctors were until I moved to this clinic. Doctors take your concerns seriously, talk about ALL options before taking the action of the best option for YOU (not just the 'easiest' for them) they care about their patients and are genuinely good people. They are very involved in keeping you healthy and learning all they can about this disease. Any new information or tidbit they pick up from conferences they pass on to their patients. (The only pet peeve I have is the nutritionist, she's not very helpful, but most nutritionist I find aren't that helpful anyway.) Also, in general my hospitalizations with them have gone extremely well! They are very accommodating, caring, supportive, and are always on their toes.

bethylove · Apr 19, 2010

Rhode Island Children's CF Clinic - Pretty decent up until a certain point in time, when the head CF doc left and another pulmonologist stepped up. I couldn't stand her and the way she treated her patients, so I ended up switching over to the Adult CF doc, who is a private practicing pulmonologist/cardiologist and did "cf" in his "spare time". I had never been anywhere else so I thought the adult cf doctor was an improvement from the pedi. until one time I REALLY needed to go into the hospital and I asked to be admitted and they said "NO"!!!! And put me on cipro --which I'm only partially tolerant of (wrong terminology! but my bugs aren't totally killed by cipro only somewhat). Fast forward 1.5 months later, and I end up in the ER, where AGAIN he wanted to send me home on CIPRO --which I had just finished 2 weeks of. So I made a huge stink and they admitted me. They didn't perform one single PFT the whole time I was there.(Not even when they 'decided' I was well enough to leave) I saw some regular pulmonolgist for some unknown reason, the service was horrible, I wasn't on any of the correct drugs. It was a nightmare. Luckily I moved right after that so I never have to seem them again! Phew.

Virginia Commonwealth University Medical Center (VCU/MCV in Richmond) Pediatric CF Clinic: AWESOME!!! I cannot say enough GOOD things about this clinic, and their doctors! I didn't realize how terrible my previous clinic/doctors were until I moved to this clinic. Doctors take your concerns seriously, talk about ALL options before taking the action of the best option for YOU (not just the 'easiest' for them) they care about their patients and are genuinely good people. They are very involved in keeping you healthy and learning all they can about this disease. Any new information or tidbit they pick up from conferences they pass on to their patients. (The only pet peeve I have is the nutritionist, she's not very helpful, but most nutritionist I find aren't that helpful anyway.) Also, in general my hospitalizations with them have gone extremely well! They are very accommodating, caring, supportive, and are always on their toes.

bethylove · Apr 19, 2010

Rhode Island Children's CF Clinic - Pretty decent up until a certain point in time, when the head CF doc left and another pulmonologist stepped up. I couldn't stand her and the way she treated her patients, so I ended up switching over to the Adult CF doc, who is a private practicing pulmonologist/cardiologist and did "cf" in his "spare time". I had never been anywhere else so I thought the adult cf doctor was an improvement from the pedi. until one time I REALLY needed to go into the hospital and I asked to be admitted and they said "NO"!!!! And put me on cipro --which I'm only partially tolerant of (wrong terminology! but my bugs aren't totally killed by cipro only somewhat). Fast forward 1.5 months later, and I end up in the ER, where AGAIN he wanted to send me home on CIPRO --which I had just finished 2 weeks of. So I made a huge stink and they admitted me. They didn't perform one single PFT the whole time I was there.(Not even when they 'decided' I was well enough to leave) I saw some regular pulmonolgist for some unknown reason, the service was horrible, I wasn't on any of the correct drugs. It was a nightmare. Luckily I moved right after that so I never have to seem them again! Phew.

Virginia Commonwealth University Medical Center (VCU/MCV in Richmond) Pediatric CF Clinic: AWESOME!!! I cannot say enough GOOD things about this clinic, and their doctors! I didn't realize how terrible my previous clinic/doctors were until I moved to this clinic. Doctors take your concerns seriously, talk about ALL options before taking the action of the best option for YOU (not just the 'easiest' for them) they care about their patients and are genuinely good people. They are very involved in keeping you healthy and learning all they can about this disease. Any new information or tidbit they pick up from conferences they pass on to their patients. (The only pet peeve I have is the nutritionist, she's not very helpful, but most nutritionist I find aren't that helpful anyway.) Also, in general my hospitalizations with them have gone extremely well! They are very accommodating, caring, supportive, and are always on their toes.

bethylove · Apr 19, 2010

Rhode Island Children's CF Clinic - Pretty decent up until a certain point in time, when the head CF doc left and another pulmonologist stepped up. I couldn't stand her and the way she treated her patients, so I ended up switching over to the Adult CF doc, who is a private practicing pulmonologist/cardiologist and did "cf" in his "spare time". I had never been anywhere else so I thought the adult cf doctor was an improvement from the pedi. until one time I REALLY needed to go into the hospital and I asked to be admitted and they said "NO"!!!! And put me on cipro --which I'm only partially tolerant of (wrong terminology! but my bugs aren't totally killed by cipro only somewhat). Fast forward 1.5 months later, and I end up in the ER, where AGAIN he wanted to send me home on CIPRO --which I had just finished 2 weeks of. So I made a huge stink and they admitted me. They didn't perform one single PFT the whole time I was there.(Not even when they 'decided' I was well enough to leave) I saw some regular pulmonolgist for some unknown reason, the service was horrible, I wasn't on any of the correct drugs. It was a nightmare. Luckily I moved right after that so I never have to seem them again! Phew.
 
 Virginia Commonwealth University Medical Center (VCU/MCV in Richmond) Pediatric CF Clinic: AWESOME!!! I cannot say enough GOOD things about this clinic, and their doctors! I didn't realize how terrible my previous clinic/doctors were until I moved to this clinic. Doctors take your concerns seriously, talk about ALL options before taking the action of the best option for YOU (not just the 'easiest' for them) they care about their patients and are genuinely good people. They are very involved in keeping you healthy and learning all they can about this disease. Any new information or tidbit they pick up from conferences they pass on to their patients. (The only pet peeve I have is the nutritionist, she's not very helpful, but most nutritionist I find aren't that helpful anyway.) Also, in general my hospitalizations with them have gone extremely well! They are very accommodating, caring, supportive, and are always on their toes.

dragonlady · Apr 20, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: ldenkers

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src=""> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?</end quote></div>

Children's National Medical-was bad for me. long waiting times. I had a bad experience with one of the CF doctors. They refused to re-write my prescribtions even though I was in the clinic three months earlier and couldn't make it the appointment due to some finicial trouble.

Johns Hopkins-good, I wouldn't go anywhere else. My daughter loves this place and so do I. They just sent me an e-mail with pictures of all the staff and their names, so we would know everyone. The e-mail came through a parent/clinic mailing list. We can write each other, ask questions and the doctor will chime in and answer any questions. They have a lot of research and clinical trials going on for CF that you can be involved in and they have a new children's wing being built that should be finished in a couple of years.

dragonlady · Apr 20, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: ldenkers

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src=""> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?</end quote></div>

Children's National Medical-was bad for me. long waiting times. I had a bad experience with one of the CF doctors. They refused to re-write my prescribtions even though I was in the clinic three months earlier and couldn't make it the appointment due to some finicial trouble.

Johns Hopkins-good, I wouldn't go anywhere else. My daughter loves this place and so do I. They just sent me an e-mail with pictures of all the staff and their names, so we would know everyone. The e-mail came through a parent/clinic mailing list. We can write each other, ask questions and the doctor will chime in and answer any questions. They have a lot of research and clinical trials going on for CF that you can be involved in and they have a new children's wing being built that should be finished in a couple of years.

dragonlady · Apr 20, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: ldenkers

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src=""> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?</end quote></div>

Children's National Medical-was bad for me. long waiting times. I had a bad experience with one of the CF doctors. They refused to re-write my prescribtions even though I was in the clinic three months earlier and couldn't make it the appointment due to some finicial trouble.

Johns Hopkins-good, I wouldn't go anywhere else. My daughter loves this place and so do I. They just sent me an e-mail with pictures of all the staff and their names, so we would know everyone. The e-mail came through a parent/clinic mailing list. We can write each other, ask questions and the doctor will chime in and answer any questions. They have a lot of research and clinical trials going on for CF that you can be involved in and they have a new children's wing being built that should be finished in a couple of years.

dragonlady · Apr 20, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: ldenkers

I am sure everyone has good and bad experiences!

Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src=""> Turns out they are pancreatic sufficient and don't even need them!

Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.

Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?</end quote>

Children's National Medical-was bad for me. long waiting times. I had a bad experience with one of the CF doctors. They refused to re-write my prescribtions even though I was in the clinic three months earlier and couldn't make it the appointment due to some finicial trouble.

Johns Hopkins-good, I wouldn't go anywhere else. My daughter loves this place and so do I. They just sent me an e-mail with pictures of all the staff and their names, so we would know everyone. The e-mail came through a parent/clinic mailing list. We can write each other, ask questions and the doctor will chime in and answer any questions. They have a lot of research and clinical trials going on for CF that you can be involved in and they have a new children's wing being built that should be finished in a couple of years.

dragonlady · Apr 20, 2010

<div class="FTQUOTE"><begin quote>Originally posted by: ldenkers
 
 I am sure everyone has good and bad experiences!
 
 
 
 Albany Med Childrens CF Clinic- bad! they gave us tons of meds before even doing one test on my twin boys. To this day no treatment necessary (thank god). The bad part is they were 3months premature with multiple surgeries and the enzymes really hurt the new intestine <img src=""> Turns out they are pancreatic sufficient and don't even need them!
 
 
 
 Boston Childrens CF clinic- okay! Only complaint is that to this day neither went over these daily treatments or physical treatments I think they are. Especially during colds I have now learned they are suggested.
 
 
 
 Now I am in the DC area and am looking for opinions on John Hopkins and Washington International. Any thoughts?</end quote>
 
 Children's National Medical-was bad for me. long waiting times. I had a bad experience with one of the CF doctors. They refused to re-write my prescribtions even though I was in the clinic three months earlier and couldn't make it the appointment due to some finicial trouble.
 
 Johns Hopkins-good, I wouldn't go anywhere else. My daughter loves this place and so do I. They just sent me an e-mail with pictures of all the staff and their names, so we would know everyone. The e-mail came through a parent/clinic mailing list. We can write each other, ask questions and the doctor will chime in and answer any questions. They have a lot of research and clinical trials going on for CF that you can be involved in and they have a new children's wing being built that should be finished in a couple of years.

falbie13 · Apr 20, 2010