Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Something's up Ruthie, as I posted a message ages ago telling Vicki I'd send something offlist but it never appeared. I think there's a black hole somewhere..... Hannah testing Just trying to figure out why my last three posts haven't appeared on the web.. I gave a web address for a mpeg of Rafi, and talked about dyslexia in my daughter; did anyone receive them? Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 My posts are all coming through very slowly and I don't think I'm getting all the posts - not as many as usual - unless everyone is out sunbathing of course! I think some I posted yesterday have only come through today. I've seen one post with one photo link and one with three photo links, but nothing about your daughter and dyslexia yet. Caro > Just trying to figure out why my last three posts haven't appeared on > the web.. I gave a web address for a mpeg of Rafi, and talked about > dyslexia in my daughter; did anyone receive them? > > Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 My posts are all coming through very slowly and I don't think I'm getting all the posts - not as many as usual - unless everyone is out sunbathing of course! I think some I posted yesterday have only come through today. I've seen one post with one photo link and one with three photo links, but nothing about your daughter and dyslexia yet. Caro > Just trying to figure out why my last three posts haven't appeared on > the web.. I gave a web address for a mpeg of Rafi, and talked about > dyslexia in my daughter; did anyone receive them? > > Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 My posts are all coming through very slowly and I don't think I'm getting all the posts - not as many as usual - unless everyone is out sunbathing of course! I think some I posted yesterday have only come through today. I've seen one post with one photo link and one with three photo links, but nothing about your daughter and dyslexia yet. Caro > Just trying to figure out why my last three posts haven't appeared on > the web.. I gave a web address for a mpeg of Rafi, and talked about > dyslexia in my daughter; did anyone receive them? > > Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2001 Report Share Posted July 4, 2001 > My posts are all coming through very slowly and I don't think I'm > getting all the posts - not as many as usual - unless everyone is out > sunbathing of course! I think some I posted yesterday have only come > through today. > > I've seen one post with one photo link and one with three photo links, > but nothing about your daughter and dyslexia yet. > Caro That's gone down the Bermuda triangle too then. Weird... it's the Twiglet zone... Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2001 Report Share Posted July 4, 2001 > My posts are all coming through very slowly and I don't think I'm > getting all the posts - not as many as usual - unless everyone is out > sunbathing of course! I think some I posted yesterday have only come > through today. > > I've seen one post with one photo link and one with three photo links, > but nothing about your daughter and dyslexia yet. > Caro That's gone down the Bermuda triangle too then. Weird... it's the Twiglet zone... Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2001 Report Share Posted July 4, 2001 > My posts are all coming through very slowly and I don't think I'm > getting all the posts - not as many as usual - unless everyone is out > sunbathing of course! I think some I posted yesterday have only come > through today. > > I've seen one post with one photo link and one with three photo links, > but nothing about your daughter and dyslexia yet. > Caro That's gone down the Bermuda triangle too then. Weird... it's the Twiglet zone... Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 I will be seeing my Pulmo. Dr. in a couple of weeks. He does not seem to do any testing on me like I have been reading from all of you. He listens to my lungs and then complains about my weight and that is it. It has been six months since I've seen him. What tests should I be having for someone that has had PF for 7 years and will not have a transplant? Thank you all for your input. Jodee PF, RA, Fibramylagia, CHF, Diabetis, High Chlorostrol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Jodee May I yell ECHOCARDIOGRAM. I second all Beth has said and you simply have to decide if you're getting what you need. I have PFT's every few months but the one so often overlooked is an Echocardiogram. You know about your PF. It's Pulmonary Hypertension you want to be wary of. For my PF, doing nothing has been our course and is working, so not much more for the pulmonologist to do. Now, that drives my rhematologist mad so he does labs and checks me out every six weeks, which is a bit obsessive. You have to judge what you are getting and how you feel about it. For instance, I have a nephrologist who I think is great. All she does right now though is runs labs every four months. Unless my kidneys take a major turn, watching is all that is called for. We both believe that my kidneys will outlast my lungs so no major concern. > > Jodee, > > It's really difficult to say what should be done in individual cases. What I would say that if you are not satisfied with the care you are receiving from your pulmonologist than you might give some consideration to switching doctors. > I was diagnosed 3 years ago and I get my care now at Duke. I see the pulmo there every 3-6 months depending on how I am doing. I have a full pulmonary function test every time I see him and I have an echocardiogram twice a year. > I also see a rheumotologist for my dermatomyositis and obviously have bloodwork and such done on a regular basis for that. > > If your doctor feels certain of your diagnosis and your stability then he/she may not see the need for extensive testing. If it were me however I would be more comfortable if you had a PFT at least once a year along with an echocardiogram. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Hard2Breathe4Me hard2breathe4me@... > To: Breathe-Support > Sent: Saturday, June 6, 2009 12:09:14 PM > Subject: Testing > > > > > > I will be seeing my Pulmo. Dr. in a couple of weeks. He does not seem to do any testing on me like I have been reading from all of you. He listens to my lungs and then complains about my weight and that is it. It has been six months since I've seen him. What tests should I be having for someone that has had PF for 7 years and will not have a transplant? Thank you all for your input. > Jodee > PF, RA, Fibramylagia, CHF, Diabetis, High Chlorostrol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009 My first Pulmo guy did some tests, including a high res CT scan, diagnosed it, and said it was pretty far along, and that was about all he did! I asked about a transplant, he shook his head no. I asked about several drugs that I'd heard were being tested, he'd not heard of them. If I called his office I couldn't get calls returned. The guy is in his 70s and has been head of the doctors at the hospital, has a great resume, but I think he's just coasting now. I got the distinct impression he had kissed me off and didn't want to be bothered. So I got a second opinion. I love the guy, he had me at the Penn Lung Center within a month, had good answers to all my questions, and if I call there with a question his nurse calls me back almost immediately. I believe there are pulmonologists who know very little about Pulmonary Fibrosis, and I think my first one was one of those, and further, I don't think he cared to learn more about it! I was very unhappy with him. If you're unhappy, by all means get another one. At least make an appointment and check him out. You will need your records or he'll have to order more. Bill Crafton IPF Oct 08 Northeastern PA We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009  AMEN, Bill, AMEN! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re:Testing My first Pulmo guy did some tests, including a high res CT scan, diagnosed it, and said it was pretty far along, and that was about all he did! I asked about a transplant, he shook his head no. I asked about several drugs that I'd heard were being tested, he'd not heard of them. If I called his office I couldn't get calls returned. The guy is in his 70s and has been head of the doctors at the hospital, has a great resume, but I think he's just coasting now. I got the distinct impression he had kissed me off and didn't want to be bothered. So I got a second opinion. I love the guy, he had me at the Penn Lung Center within a month, had good answers to all my questions, and if I call there with a question his nurse calls me back almost immediately. I believe there are pulmonologists who know very little about Pulmonary Fibrosis, and I think my first one was one of those, and further, I don't think he cared to learn more about it! I was very unhappy with him. If you're unhappy, by all means get another one. At least make an appointment and check him out. You will need your records or he'll have to order more. Bill Crafton IPF Oct 08 Northeastern PA We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009  AMEN, Bill, AMEN! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re:Testing My first Pulmo guy did some tests, including a high res CT scan, diagnosed it, and said it was pretty far along, and that was about all he did! I asked about a transplant, he shook his head no. I asked about several drugs that I'd heard were being tested, he'd not heard of them. If I called his office I couldn't get calls returned. The guy is in his 70s and has been head of the doctors at the hospital, has a great resume, but I think he's just coasting now. I got the distinct impression he had kissed me off and didn't want to be bothered. So I got a second opinion. I love the guy, he had me at the Penn Lung Center within a month, had good answers to all my questions, and if I call there with a question his nurse calls me back almost immediately. I believe there are pulmonologists who know very little about Pulmonary Fibrosis, and I think my first one was one of those, and further, I don't think he cared to learn more about it! I was very unhappy with him. If you're unhappy, by all means get another one. At least make an appointment and check him out. You will need your records or he'll have to order more. Bill Crafton IPF Oct 08 Northeastern PA We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2009 Report Share Posted June 7, 2009  AMEN, Bill, AMEN! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re:Testing My first Pulmo guy did some tests, including a high res CT scan, diagnosed it, and said it was pretty far along, and that was about all he did! I asked about a transplant, he shook his head no. I asked about several drugs that I'd heard were being tested, he'd not heard of them. If I called his office I couldn't get calls returned. The guy is in his 70s and has been head of the doctors at the hospital, has a great resume, but I think he's just coasting now. I got the distinct impression he had kissed me off and didn't want to be bothered. So I got a second opinion. I love the guy, he had me at the Penn Lung Center within a month, had good answers to all my questions, and if I call there with a question his nurse calls me back almost immediately. I believe there are pulmonologists who know very little about Pulmonary Fibrosis, and I think my first one was one of those, and further, I don't think he cared to learn more about it! I was very unhappy with him. If you're unhappy, by all means get another one. At least make an appointment and check him out. You will need your records or he'll have to order more. Bill Crafton IPF Oct 08 Northeastern PA We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com. Quote Link to comment Share on other sites More sharing options...
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