Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 He has had a couple of bad days, but the weather is really screwy. Today was the second day of rehab and he is pooped and asleep on the couch. Are you involved in a study in Chicago? I just talked to this lady up there and she gave me all the info. She said that they do not put people on prednisone, and Don really wants off. She said they don't think it works. Well, I guess that is what many say here on the board. I'll call them tomorrow. Just wondering what you found when you went up. K illinois Fay wrote: I made it back here. I have been working on a kite festival that was last weekend here in Decatur. I spent so much time on that I did not want to sit here and go thru mail on this site. Glad to hear Don is doing well, how about You?? This map idea is a good one. How did Don do in rehab? Re: P If you come for it, and the weather is great let us know. Monday, Wednesday and Friday's are Don's rehab in the afternoon. He is not looking forward to doing this but he knows it is necessary. It zapped him for the weekend and he only rode the exercise bike for 15 minutes on Friday. We had so much fun meeting Fay (which by the way he hasn't posted lately) it will be fun meeting you. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 K I am awaiting all my results from the University of Chicago but I do strongly recommend anyone who can make at least one trip to one of the 13 IPF Centers of Excellence and it is one. At the least its a second opinion from one of the most knowledgeable and at the best its some additional insight. I don't yet know which of those my trip will turn out to be. However, I know their protocols even on something as simple as a CT are specifically designed for PF. > I made it back here. I have been working on a kite festival that was last weekend here in Decatur. I spent so much time on that I did not want to sit here and go thru mail on this site. Glad to hear Don is doing well, how about You?? This map idea is a good one. How did Don do in rehab? > > Re: P > > If you come for it, and the weather is great let us know. Monday, Wednesday and Friday's are Don's rehab in the afternoon. He is not looking forward to doing this but he knows it is necessary. It zapped him for the weekend and he only rode the exercise bike for 15 minutes on Friday. > We had so much fun meeting Fay (which by the way he hasn't posted lately) it will be fun meeting you. > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Remember the link that Z sent out not long ago for clinical studies across the US? Well, I found one for the U of C, and I called today the number that was there. By golly she called me back. Tomorrow I'm going to call up there and make an appointment. She said that there are several studies that are starting this summer. They will want to do a lot of tests to make sure that he was diagnosed correctly - believe me I would be tickled to death if he wasn't. She said he wouldn't qualify for one because he is already on prednisone and they are going to start one with prednisone this summer to put to rest whether it does anything at all for ipf. The docs up there don't think that it does. I told her that our doc doesn't want to take him off because he thinks it might be. I told her that his quality of life stinks and we think it is the prednisone. I'm pretty excited that maybe we might be able to be involved with a study. I'm not sure what I really want but at least we can maybe help someone else as they travel down this path. It might not even be too late for Don. We might be in on the fringes of a break through. I doubt it, but who knows. K IllinoisBruce Moreland wrote: KI am awaiting all my results from the University of Chicago but I dostrongly recommend anyone who can make at least one trip to one of the13 IPF Centers of Excellence and it is one. At the least its a secondopinion from one of the most knowledgeable and at the best its someadditional insight. I don't yet know which of those my trip will turnout to be. However, I know their protocols even on something as simpleas a CT are specifically designed for PF.> I made it back here. I have been working on a kite festival thatwas last weekend here in Decatur. I spent so much time on that I did notwant to sit here and go thru mail on this site. Glad to hear Don isdoing well, how about You?? This map idea is a good one. How did Don doin rehab?>> Re: P>> If you come for it, and the weather is great let us know. Monday,Wednesday and Friday's are Don's rehab in the afternoon. He is notlooking forward to doing this but he knows it is necessary. It zappedhim for the weekend and he only rode the exercise bike for 15 minutes onFriday.> We had so much fun meeting Fay (which by the way he hasn't postedlately) it will be fun meeting you.>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 K I'm betting you spoke to Brown...she's incredible and she's the nursing coordinator. His day will be Echocardiogram, CT's, PFT's, Blood Tests, and then doctor. I got there early and rather than have to wait she juggled things and when I finished one I got to head to the next one so I got my blood in during the day rather than at the end. There is valet parking right at the building or the garage is directly across as its in the Advanced Medicine building (I forget the name). As they should act, they don't assume any part of whats been done before. They'll want you to get his records there before and you'll be amazed that the doctor has actually reviewed them when you show up. On the testing they follow the protocol standardized by the 13 Centers. Certain things you don't think about they do too. For instance my biopsy was reviewed by two pathologists prior but neither of those ever had interactive conversations with the pulmonologist. Here that does happen, so they can discuss, in my case, those things that are atypical of the diagnosis. Glad you made contact and are headed there, whether or not he participates in any trials. > > I made it back here. I have been working on a kite festival that > was last weekend here in Decatur. I spent so much time on that I did not > want to sit here and go thru mail on this site. Glad to hear Don is > doing well, how about You?? This map idea is a good one. How did Don do > in rehab? > > > > Re: P > > > > If you come for it, and the weather is great let us know. Monday, > Wednesday and Friday's are Don's rehab in the afternoon. He is not > looking forward to doing this but he knows it is necessary. It zapped > him for the weekend and he only rode the exercise bike for 15 minutes on > Friday. > > We had so much fun meeting Fay (which by the way he hasn't posted > lately) it will be fun meeting you. > > > > > > > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try > it now. > > > > > > > > > > > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try > it now. > > > > > > > > > > K > > Central Il > > Hubby ipf- 2006 > > As for me and my house, we will serve the Lord > > 14 > > > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try > it now. > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 I have not gone to Chicago to get in the study yet. I will be trying to schedule a visit in the coming week. I am calling University of Chicago transplant doctor at the advice of my doctor. Since the study and the transplant is the same facility I was interested in trying to work with one or the other if possible. Good luck on your visit. Fay IPF 06/06 IL Re: P If you come for it, and the weather is great let us know. Monday, Wednesday and Friday's are Don's rehab in the afternoon. He is not looking forward to doing this but he knows it is necessary. It zapped him for the weekend and he only rode the exercise bike for 15 minutes on Friday. We had so much fun meeting Fay (which by the way he hasn't posted lately) it will be fun meeting you. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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