Re: Re:Don's study

[Guest guest]

This is fantastic. My fingers are crossed Don gets in the study. All research is hopeful. I am one who has stayed on prednisone thinking it helps and have trouble believing it can be the culprit for all the problems related to on this board. I guess you have to be proactive to get considered for trials too. I think I will start calling myself when back. Sitting here just waiting for them to contact me or waiting to die is driving me nuts. Good luck.

This map thing is interesting,Ill have to see if she'll give me the $40.00for the software. I know a large map on one her walls with stick pins is not going to cut it.

Never, Never say too late. I beleive in miracles. Look at Joyce.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: john fayDate: Mon, 28 Apr 2008 15:44:36 -0700 (PDT)

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 <brucemorelandgmail> 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.