I am 27 with Cystic Fibrosis and I'm curious to hear your recommendations and warnings about your Adult Cystic Fibrosis doctors in Florida. I currently live in the central Florida area and am looking into the possibility of upgrading to a better Adult CF doctor. Thanks for your input. <img src="i/expressions/face-icon-small-smile.gif" border="0">
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Any Good CF Doctors in Florida?
- Thread starter vestgirl
- Start date
I am 27 with Cystic Fibrosis and I'm curious to hear your recommendations and warnings about your Adult Cystic Fibrosis doctors in Florida. I currently live in the central Florida area and am looking into the possibility of upgrading to a better Adult CF doctor. Thanks for your input. <img src="i/expressions/face-icon-small-smile.gif" border="0">
mamaScarlett
Active member
I don't know about central FL, but I've heard in the Cf community that Miami Children's is great, and they have an adult connection.
mamaScarlett
Active member
I don't know about central FL, but I've heard in the Cf community that Miami Children's is great, and they have an adult connection.
I go to the CF Center in Hollywood Florida {Ft. Lauderdale area} Joe Dimaggio Childrens Cystic Fibrosis and Pulmonary Center and am under the care of Dr. Lance Cohen. He is awesome. I cant say enough good things about him. He specializes in infectious disease and is very thorough. I have been seeing him for several years now and have been very happy with my care. It might be a bit of a drive but def worth it.
Kristen-29 yr DF508, mother of 3 yr old daughter {non-CF}
Kristen-29 yr DF508, mother of 3 yr old daughter {non-CF}
I go to the CF Center in Hollywood Florida {Ft. Lauderdale area} Joe Dimaggio Childrens Cystic Fibrosis and Pulmonary Center and am under the care of Dr. Lance Cohen. He is awesome. I cant say enough good things about him. He specializes in infectious disease and is very thorough. I have been seeing him for several years now and have been very happy with my care. It might be a bit of a drive but def worth it.
Kristen-29 yr DF508, mother of 3 yr old daughter {non-CF}
Kristen-29 yr DF508, mother of 3 yr old daughter {non-CF}
E
entropy
Guest
I live in Central Florida also. Are you in the Orlando area? I live in Titusville and go to Orlando to see my CF specialist. You will be hard pressed to find any doctor who knows anything worthwhile about CF outside of a big city like Orlando.
I see Dr. Calimano who is with CF Pulmonary Group (it stands for "Central Florida Pulmonary Group" but they ARE a CF clinic so it's a good play on words). Dr. Calimano works with Dr. Layish, who I have never met, but have heard great things about. Dr. Calimano and his partners are all very good. I am in the hospital right now in Altamonte Springs and the doctors here see lots of CF patients and are very knowledgeable and kind. CFPG's associated hospital (Florida Hospital North) is GREAT. The rooms are very nice, single patient rooms with nice furniture, a huge flatscreen TV, great nurses, etc. The food sucks, but the services by far make up for the food. The hospitalists are AWESOME.
All of the pediatric CF patients in the Central Florida area who went to Nemours Children's Clinic are referred to CFPG when they're adults. It's really a great practice. They also keep you "comfortable" when you're in the hospital, which is a major plus.
I can't say enough about how awesome this staff is. I highly recommend them. Google "CFPG orlando" if you want more information, or PM me.
I see Dr. Calimano who is with CF Pulmonary Group (it stands for "Central Florida Pulmonary Group" but they ARE a CF clinic so it's a good play on words). Dr. Calimano works with Dr. Layish, who I have never met, but have heard great things about. Dr. Calimano and his partners are all very good. I am in the hospital right now in Altamonte Springs and the doctors here see lots of CF patients and are very knowledgeable and kind. CFPG's associated hospital (Florida Hospital North) is GREAT. The rooms are very nice, single patient rooms with nice furniture, a huge flatscreen TV, great nurses, etc. The food sucks, but the services by far make up for the food. The hospitalists are AWESOME.
All of the pediatric CF patients in the Central Florida area who went to Nemours Children's Clinic are referred to CFPG when they're adults. It's really a great practice. They also keep you "comfortable" when you're in the hospital, which is a major plus.
I can't say enough about how awesome this staff is. I highly recommend them. Google "CFPG orlando" if you want more information, or PM me.
E
entropy
Guest
I live in Central Florida also. Are you in the Orlando area? I live in Titusville and go to Orlando to see my CF specialist. You will be hard pressed to find any doctor who knows anything worthwhile about CF outside of a big city like Orlando.
I see Dr. Calimano who is with CF Pulmonary Group (it stands for "Central Florida Pulmonary Group" but they ARE a CF clinic so it's a good play on words). Dr. Calimano works with Dr. Layish, who I have never met, but have heard great things about. Dr. Calimano and his partners are all very good. I am in the hospital right now in Altamonte Springs and the doctors here see lots of CF patients and are very knowledgeable and kind. CFPG's associated hospital (Florida Hospital North) is GREAT. The rooms are very nice, single patient rooms with nice furniture, a huge flatscreen TV, great nurses, etc. The food sucks, but the services by far make up for the food. The hospitalists are AWESOME.
All of the pediatric CF patients in the Central Florida area who went to Nemours Children's Clinic are referred to CFPG when they're adults. It's really a great practice. They also keep you "comfortable" when you're in the hospital, which is a major plus.
I can't say enough about how awesome this staff is. I highly recommend them. Google "CFPG orlando" if you want more information, or PM me.
I see Dr. Calimano who is with CF Pulmonary Group (it stands for "Central Florida Pulmonary Group" but they ARE a CF clinic so it's a good play on words). Dr. Calimano works with Dr. Layish, who I have never met, but have heard great things about. Dr. Calimano and his partners are all very good. I am in the hospital right now in Altamonte Springs and the doctors here see lots of CF patients and are very knowledgeable and kind. CFPG's associated hospital (Florida Hospital North) is GREAT. The rooms are very nice, single patient rooms with nice furniture, a huge flatscreen TV, great nurses, etc. The food sucks, but the services by far make up for the food. The hospitalists are AWESOME.
All of the pediatric CF patients in the Central Florida area who went to Nemours Children's Clinic are referred to CFPG when they're adults. It's really a great practice. They also keep you "comfortable" when you're in the hospital, which is a major plus.
I can't say enough about how awesome this staff is. I highly recommend them. Google "CFPG orlando" if you want more information, or PM me.
ambermarie03
New member
I'm currently a pt at Shands of UF in Gainesville and I really like it there. I moved to the Clermont area over a year ago and thought about switching to the clinic in Orlando just because it made more sense with travel. However, I'm very comfortable at Shands and do not want to change. The staff is very friendly and the appointments do not last long, which is good considering it is an all day event as it is ( I drive 1 hr 30 minutes).
ambermarie03
New member
I'm currently a pt at Shands of UF in Gainesville and I really like it there. I moved to the Clermont area over a year ago and thought about switching to the clinic in Orlando just because it made more sense with travel. However, I'm very comfortable at Shands and do not want to change. The staff is very friendly and the appointments do not last long, which is good considering it is an all day event as it is ( I drive 1 hr 30 minutes).
I really appreciate everyone's input. In the CF community I've heard tons of CF patients leaving the Central Florida Pulmonary groups care and going to either Shands or Miami for CF care. @entrophy- I haven't seen Dr. Calimano before, but while seeing Dr. Layish in Orlando I did not like how when it was time for intravenous antibiotics he did not know what antibiotics to pick so he would send me to an infectious disease doctor to prescribe what I.V. meds would be used when fighting my Pseudomonas infection. When fighting a Pseudomonas infection or any CF exacerbation, I believe that a good Cystic Fibrosis doctor should know everything there is to know about CF, CF infections, and how to treat the disease.
Also, being put in a tiny hospital room without a shower in isolation is disgusting. I remember sitting in my own filth for days wondering why I was not in a room with a shower included. My pregnant friend who does not have CF and was only in the hospital for a night had a better room than I did which included a shower, a flat screen tv, and a fridge. And unfortunately, with adult CF care it's not exactly as great of a care compared to when I was a child. I feel like when CF patients started to live to adult hood they didn't know what to do with us and from the doctors I have had experiences with, they still don't know what to do. I'm looking for a doctor that is proactive, a cheerleader, knows everything there is about Cystic Fibrosis (one stop shop), knows more than me about Cystic Fibrosis, an organized office staff that returns phone calls, and a knowledgeable hospital staff with a shower in hospital room when it comes time for I.V.'s. Are those things to much to ask?
Sorry for the rant, I have just been frustrated on the Adult CF care that I have received. For example: I was concerned because my heart was jumping out of my chest, my fingers felt shaky, and my heart felt like it was working overtime. My doctor prescribed me with Nexium and told me it was acid reflux. I explained to him that it was not that, but he wouldn't listen. I didn't take the Nexium because I did not have acid reflux. I know that it is common for CFer's to have acid reflux, but I did not having a burning sensation in my heart. I realized on my own without a doctors help that it was my 3 times a day nebulized albuterol causing my heart to beat super fast and caused my fingers to have the shakes. When I stopped taking my nebulized albuterol three times a day, I stopped having heart issues. I just hate being my own doctor and wish a smart CF doctor could take over.
Amber-what doctor do you see at shands?
Also, being put in a tiny hospital room without a shower in isolation is disgusting. I remember sitting in my own filth for days wondering why I was not in a room with a shower included. My pregnant friend who does not have CF and was only in the hospital for a night had a better room than I did which included a shower, a flat screen tv, and a fridge. And unfortunately, with adult CF care it's not exactly as great of a care compared to when I was a child. I feel like when CF patients started to live to adult hood they didn't know what to do with us and from the doctors I have had experiences with, they still don't know what to do. I'm looking for a doctor that is proactive, a cheerleader, knows everything there is about Cystic Fibrosis (one stop shop), knows more than me about Cystic Fibrosis, an organized office staff that returns phone calls, and a knowledgeable hospital staff with a shower in hospital room when it comes time for I.V.'s. Are those things to much to ask?
Sorry for the rant, I have just been frustrated on the Adult CF care that I have received. For example: I was concerned because my heart was jumping out of my chest, my fingers felt shaky, and my heart felt like it was working overtime. My doctor prescribed me with Nexium and told me it was acid reflux. I explained to him that it was not that, but he wouldn't listen. I didn't take the Nexium because I did not have acid reflux. I know that it is common for CFer's to have acid reflux, but I did not having a burning sensation in my heart. I realized on my own without a doctors help that it was my 3 times a day nebulized albuterol causing my heart to beat super fast and caused my fingers to have the shakes. When I stopped taking my nebulized albuterol three times a day, I stopped having heart issues. I just hate being my own doctor and wish a smart CF doctor could take over.
Amber-what doctor do you see at shands?
I really appreciate everyone's input. In the CF community I've heard tons of CF patients leaving the Central Florida Pulmonary groups care and going to either Shands or Miami for CF care. @entrophy- I haven't seen Dr. Calimano before, but while seeing Dr. Layish in Orlando I did not like how when it was time for intravenous antibiotics he did not know what antibiotics to pick so he would send me to an infectious disease doctor to prescribe what I.V. meds would be used when fighting my Pseudomonas infection. When fighting a Pseudomonas infection or any CF exacerbation, I believe that a good Cystic Fibrosis doctor should know everything there is to know about CF, CF infections, and how to treat the disease.
Also, being put in a tiny hospital room without a shower in isolation is disgusting. I remember sitting in my own filth for days wondering why I was not in a room with a shower included. My pregnant friend who does not have CF and was only in the hospital for a night had a better room than I did which included a shower, a flat screen tv, and a fridge. And unfortunately, with adult CF care it's not exactly as great of a care compared to when I was a child. I feel like when CF patients started to live to adult hood they didn't know what to do with us and from the doctors I have had experiences with, they still don't know what to do. I'm looking for a doctor that is proactive, a cheerleader, knows everything there is about Cystic Fibrosis (one stop shop), knows more than me about Cystic Fibrosis, an organized office staff that returns phone calls, and a knowledgeable hospital staff with a shower in hospital room when it comes time for I.V.'s. Are those things to much to ask?
Sorry for the rant, I have just been frustrated on the Adult CF care that I have received. For example: I was concerned because my heart was jumping out of my chest, my fingers felt shaky, and my heart felt like it was working overtime. My doctor prescribed me with Nexium and told me it was acid reflux. I explained to him that it was not that, but he wouldn't listen. I didn't take the Nexium because I did not have acid reflux. I know that it is common for CFer's to have acid reflux, but I did not having a burning sensation in my heart. I realized on my own without a doctors help that it was my 3 times a day nebulized albuterol causing my heart to beat super fast and caused my fingers to have the shakes. When I stopped taking my nebulized albuterol three times a day, I stopped having heart issues. I just hate being my own doctor and wish a smart CF doctor could take over.
Amber-what doctor do you see at shands?
Also, being put in a tiny hospital room without a shower in isolation is disgusting. I remember sitting in my own filth for days wondering why I was not in a room with a shower included. My pregnant friend who does not have CF and was only in the hospital for a night had a better room than I did which included a shower, a flat screen tv, and a fridge. And unfortunately, with adult CF care it's not exactly as great of a care compared to when I was a child. I feel like when CF patients started to live to adult hood they didn't know what to do with us and from the doctors I have had experiences with, they still don't know what to do. I'm looking for a doctor that is proactive, a cheerleader, knows everything there is about Cystic Fibrosis (one stop shop), knows more than me about Cystic Fibrosis, an organized office staff that returns phone calls, and a knowledgeable hospital staff with a shower in hospital room when it comes time for I.V.'s. Are those things to much to ask?
Sorry for the rant, I have just been frustrated on the Adult CF care that I have received. For example: I was concerned because my heart was jumping out of my chest, my fingers felt shaky, and my heart felt like it was working overtime. My doctor prescribed me with Nexium and told me it was acid reflux. I explained to him that it was not that, but he wouldn't listen. I didn't take the Nexium because I did not have acid reflux. I know that it is common for CFer's to have acid reflux, but I did not having a burning sensation in my heart. I realized on my own without a doctors help that it was my 3 times a day nebulized albuterol causing my heart to beat super fast and caused my fingers to have the shakes. When I stopped taking my nebulized albuterol three times a day, I stopped having heart issues. I just hate being my own doctor and wish a smart CF doctor could take over.
Amber-what doctor do you see at shands?
I see Dr. Rolfe at Tampa General Hospital. He is excellent and the Adult Cystic Fibrosis Coordinator, Suzanne Roberson, is MARVELOUS! Whenever I am sick or have a problem, I call the CF Coordinator. If she cannot take care of the issue she will consult with the doctor and get right back with me. Dr. Rolfe has an Adult CF Clinic on Fridays at Tampa General Hospital. He is also the Medical Director of the Lung Transplant Program. I think it would be approximately a one hour drive from Central Florida.
I was diagnosed at 41 and I am soon to be 59 so I think they're doing a good job. I've had a lot of health issues over the years but somehow, with their help, I'm still here. I was lucky to find them and I highly recommend them to you. The contact information is below. I hope this helps you.
Suzanne Roberson, RN
Adult CF Coordinator/Research Nurse
Center for Outpatient Research Excellence (CORE)
Office phone: 813-844-7179
Cell phone: 813-610-2226
Fax: 813-844-8121
I was diagnosed at 41 and I am soon to be 59 so I think they're doing a good job. I've had a lot of health issues over the years but somehow, with their help, I'm still here. I was lucky to find them and I highly recommend them to you. The contact information is below. I hope this helps you.
Suzanne Roberson, RN
Adult CF Coordinator/Research Nurse
Center for Outpatient Research Excellence (CORE)
Office phone: 813-844-7179
Cell phone: 813-610-2226
Fax: 813-844-8121
I see Dr. Rolfe at Tampa General Hospital. He is excellent and the Adult Cystic Fibrosis Coordinator, Suzanne Roberson, is MARVELOUS! Whenever I am sick or have a problem, I call the CF Coordinator. If she cannot take care of the issue she will consult with the doctor and get right back with me. Dr. Rolfe has an Adult CF Clinic on Fridays at Tampa General Hospital. He is also the Medical Director of the Lung Transplant Program. I think it would be approximately a one hour drive from Central Florida.
I was diagnosed at 41 and I am soon to be 59 so I think they're doing a good job. I've had a lot of health issues over the years but somehow, with their help, I'm still here. I was lucky to find them and I highly recommend them to you. The contact information is below. I hope this helps you.
Suzanne Roberson, RN
Adult CF Coordinator/Research Nurse
Center for Outpatient Research Excellence (CORE)
Office phone: 813-844-7179
Cell phone: 813-610-2226
Fax: 813-844-8121
I was diagnosed at 41 and I am soon to be 59 so I think they're doing a good job. I've had a lot of health issues over the years but somehow, with their help, I'm still here. I was lucky to find them and I highly recommend them to you. The contact information is below. I hope this helps you.
Suzanne Roberson, RN
Adult CF Coordinator/Research Nurse
Center for Outpatient Research Excellence (CORE)
Office phone: 813-844-7179
Cell phone: 813-610-2226
Fax: 813-844-8121
I use to be a patient at Central Florida Pulmonary for years. I saw Dr. Calimano, and i believe he is an excellent Dr. I did have the experience of them outsourcing my IV meds to an infectious disease Dr. which I found weird. The hospital rooms were always top notch, though.
I also saw Dr.'s at the Jacksonville Clinic, and had a good experience with them.
I currently live in Austin, and the team here is excellent. I have also lived in Atlanta, and my care there was phenominal. They had the best RT I have ever worked with! He would come to my room and teach me lung clearance techniques and work with me daily during my hospital stays. I really wish there were more hardcore RT's. They can really make a big difference.
I also saw Dr.'s at the Jacksonville Clinic, and had a good experience with them.
I currently live in Austin, and the team here is excellent. I have also lived in Atlanta, and my care there was phenominal. They had the best RT I have ever worked with! He would come to my room and teach me lung clearance techniques and work with me daily during my hospital stays. I really wish there were more hardcore RT's. They can really make a big difference.
I use to be a patient at Central Florida Pulmonary for years. I saw Dr. Calimano, and i believe he is an excellent Dr. I did have the experience of them outsourcing my IV meds to an infectious disease Dr. which I found weird. The hospital rooms were always top notch, though.
I also saw Dr.'s at the Jacksonville Clinic, and had a good experience with them.
I currently live in Austin, and the team here is excellent. I have also lived in Atlanta, and my care there was phenominal. They had the best RT I have ever worked with! He would come to my room and teach me lung clearance techniques and work with me daily during my hospital stays. I really wish there were more hardcore RT's. They can really make a big difference.
I also saw Dr.'s at the Jacksonville Clinic, and had a good experience with them.
I currently live in Austin, and the team here is excellent. I have also lived in Atlanta, and my care there was phenominal. They had the best RT I have ever worked with! He would come to my room and teach me lung clearance techniques and work with me daily during my hospital stays. I really wish there were more hardcore RT's. They can really make a big difference.
TwistedTanya
New member
I used to live in Orlando and saw Dr. Layish. I did not like my experience with him or the hospital there. For example: One time I was having a hard time breathing and the nurse put me on oxygen which I had never been on before in the 5 years I had been going there. Dr. Layish never even realized it! I had to ask him about getting oxygen at home. That's just one of many reasons I don't care for him. I moved to the Tampa area and started seeing Dr. Rolfe and I love him! The coordinators are really great too! The hospital they are at is Tampa General which is better than any of the hospitals I've been to in Orlando. He is also a lung transplant doctor. I had my transplant over 2 years ago and doing great! Dr. Rolfe is quite a character too. Cracks me up! ALso, they do not use Infectious Disease b/c they do it all themselves. They also participate in clinical trials with some of the newer meds being tried on patients. You do not HAVE to participate in these trials but many do. Also, the clinic and hospital are located at the tip of an island so you sometimes get a great view of the water or downtown Tampa. It's only a short gap between it and the other land so no long bridges to worry about.
TwistedTanya
New member
I used to live in Orlando and saw Dr. Layish. I did not like my experience with him or the hospital there. For example: One time I was having a hard time breathing and the nurse put me on oxygen which I had never been on before in the 5 years I had been going there. Dr. Layish never even realized it! I had to ask him about getting oxygen at home. That's just one of many reasons I don't care for him. I moved to the Tampa area and started seeing Dr. Rolfe and I love him! The coordinators are really great too! The hospital they are at is Tampa General which is better than any of the hospitals I've been to in Orlando. He is also a lung transplant doctor. I had my transplant over 2 years ago and doing great! Dr. Rolfe is quite a character too. Cracks me up! ALso, they do not use Infectious Disease b/c they do it all themselves. They also participate in clinical trials with some of the newer meds being tried on patients. You do not HAVE to participate in these trials but many do. Also, the clinic and hospital are located at the tip of an island so you sometimes get a great view of the water or downtown Tampa. It's only a short gap between it and the other land so no long bridges to worry about.