Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Beth, Do you know anything about Temple's Lung Center? I see that it is to be one of the best lung centers, but I did not see it listed on the ipfnet.org website only HUP. Anyone who has info would help. Adrienne Subject: Re: Where to go?To: Breathe-Support@...Date: Monday, June 29, 2009, 6:35 PM Mike, National Jewish is terrific but it is only one of many places that are equally skilled in dealing with pulmonary fibrosis. If you go to this website: www.ipfnet.org you will find a map with 22 university medical centers listed that are cooperating and coordinating in both treatment and research in interstitial lung disease. You will also find contact names and phone numbers. We've had several people recently who have gone to National Jewish. I get my care at Duke University in North Carolina. We have members who go to Emory in Atlanta, University of Pennsylvania, University of Chicago, Mayo Clinic and Cornell University. All get excellent care. There are other places also but the ipfnet website is a good place to start. You can feel confident that any of those hospitals will be extremely well informed, knowledgable and able to help you Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: mike_dulin <mikedulin (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, June 29, 2009 1:30:00 PMSubject: Where to go? Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Adrienne, I think we have someone or more than one someone on the board who goes to Temple. Just because a hospital is not included on the ipfnet website does not mean they don't have an excellent program. It's just not part of that program and coordinated effort. Temple's Lung Center has specialists in ILD and does research and has an excellent reputation. I would have no hesitation to seek evaluation and/or treatment there. I would only make one cautionary statement that has nothing at all to do with Temple. A hospital or university medical center could have a wonderful "lung program" without having tremendous expertise in interstitial lung disease. There are many lung diseases unrelated to ours. (lung cancer, emphysema, asthma, cystic fibrosis) Just be certain to ask if a hospital has specialists in interstitial lung disease within their lung program. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, June 29, 2009 4:57:11 PMSubject: Re: Where to go? Beth, Do you know anything about Temple's Lung Center? I see that it is to be one of the best lung centers, but I did not see it listed on the ipfnet.org website only HUP. Anyone who has info would help. Adrienne From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Where to go?To: Breathe-Support@ yahoogroups. .comDate: Monday, June 29, 2009, 6:35 PM Mike, National Jewish is terrific but it is only one of many places that are equally skilled in dealing with pulmonary fibrosis. If you go to this website: www.ipfnet.org you will find a map with 22 university medical centers listed that are cooperating and coordinating in both treatment and research in interstitial lung disease. You will also find contact names and phone numbers. We've had several people recently who have gone to National Jewish. I get my care at Duke University in North Carolina. We have members who go to Emory in Atlanta, University of Pennsylvania, University of Chicago, Mayo Clinic and Cornell University. All get excellent care. There are other places also but the ipfnet website is a good place to start. You can feel confident that any of those hospitals will be extremely well informed, knowledgable and able to help you Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: mike_dulin <mikedulin (AT) gmail (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, June 29, 2009 1:30:00 PMSubject: Where to go? Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Joyce, Have you heard of a Dr. Kotloff at HUP? I've been toying with getting another opinion and I don't know how I got his name, but I remember you said you go to HUP. Any suggestions or recommendations? Thanks, Adrienne From: mike_dulin <mikedulin (AT) gmail (DOT) com>Subject: Where to go?To: Breathe-Support@ yahoogroups. comDate: Monday, June 29, 2009, 10:30 AM Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Adrienne, I know you sent this to Joyce,but I also go to HUP. Dr. Kotloff was the original name given to me when I first got DX He wasn't available soon enough and the local pulmodude got me the appointment at HUP's lung center with Horace Delisser MD. I like him! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Adrienne Bishop wrote: Joyce, Have you heard of a Dr. Kotloff at HUP? I've been toying with getting another opinion and I don't know how I got his name, but I remember you said you go to HUP. Any suggestions or recommendations? Thanks, Adrienne From: mike_dulin <mikedulin (AT) gmail (DOT) com> Subject: Where to go? To: Breathe-Support@ yahoogroups. com Date: Monday, June 29, 2009, 10:30 AM Hi, I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done. After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong? Thanks, Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Adrienne yes i have heard of Dr Kotloff at Penn i don't remember who goes to him if i were referred to him, i would feel very comfortable seeing him HUP has a web site in which you can research the various pulmonary docs Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Where to go?To: Breathe-Support Date: Thursday, July 2, 2009, 4:40 PM Joyce, Have you heard of a Dr. Kotloff at HUP? I've been toying with getting another opinion and I don't know how I got his name, but I remember you said you go to HUP. Any suggestions or recommendations? Thanks, Adrienne From: mike_dulin <mikedulin (AT) gmail (DOT) com>Subject: Where to go?To: Breathe-Support@ yahoogroups. comDate: Monday, June 29, 2009, 10:30 AM Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike Quote Link to comment Share on other sites More sharing options...
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