Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 K Revatio=Sildenafil=Viagra. Jane is looking at same study at Emory. It is to see if revatio helps with exercise capability. Of course, secondary does it help in other areas of disease. See, its already approved for Pulmonary Hypertension and they are still trying to see if thats all it helps or it extends further in benefits as some believe. Who to believe? I don't believe anyone who hasn't thoroughly evaluated him and talked to him and then given the opinions and information. As to prednisone, however, I suspect you'll get many differing opinions and ultimately it will become a personal decision. The specific form of PF may influence what they say and his choice. Also, his current response if any to prednisone and side effects would play a role. Typically, U of C has you return about four weeks later to go over the findings and recommendations. I would certainly have questions ready including those about prednisone and conflicting opinions. Unfortunately, there are no absolutes in this illness. You go down 98% of the illnesses and tell me the diagnosis and I can tell you the treatment (ok, I'll cheat and look it up, but it's definitive). All we have on PF is opinions. Anyone who tells you 100% prednisone will help or 100% it will not, I would never trust. Now, if they tell you their beliefs based on thorough diagnosis and they also tell you what others believe, maybe in conflict with them, then I trust them more. Even my initial pulmonologist used well chosen words like " some doctors believe " and " may help " . > > > > I'm glad you answered. Yes I did talk to and wow!!!!!! I so > enjoyed our conversation. She told me why the fibrosis patients have > coughs. Very clear and succinct. > > Let me tell you that neither Don or I like to drive in Chicago --- and > I grew up around there. Now don't say to me, " aw it isn't that bad " , > because I know where you live and I've been down there. Plano ain't so > bad but Dallas and the freeway nuh-uh!!!!!!! I'm not sure what we will > do. We can stay at our niece and nephew's in Elgin and take the metro > in, but not sure how we would handle the whole day with the O2. > > > > Are you in line for a study? I really didn't know about how to do this > and the thoughts of Chicago were debilitating. I will call tomorrow and > make the appointment. She said it would be the end of June before we > could get an appointment, but that is ok too. It will take that long to > gather stuff. > > > > Thanks Bruce. > > > > > > > > > > > > > > > > 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 May 1, 2008 Report Share Posted May 1, 2008 Bruce, I'm not happy with your news about possible autoimmune disease, but I know you'll do your homework and ask all the appropriate questions. I'd probably recommend a second opinion in any case, but especially with all the various health issues you've got going on. I wish I could wave a magic wand and make it all better, and I hope you will take extra good care of you on your travels. Hugs and blessings, Gwynnie 57 Single-lung Transplant on 4-3-08 at UTHSC San , TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Peggy Ride home was uneventful and traffic not bad since on a Sunday. I took it easy Monday and, yes, it was an incredible time. Every moment I've spent with board members has been so special. > > > > > > > > > PEGGY? WHERE ARE YOU? > > > Maybe you went someplace else after SA. > > > > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > > > Don't fret about tomorrow, God is already there! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Bruce, My only symptoms was a breathing noise when lying on my left side (if I rolled over it would go away). At my annual physical my primary care physician sent me for xrays put me on antibiotics and sent me back for more x-rays in 1 week. He then referred me to a pulmonary doctor who sent me for PFT and HRCT. In Dec 2005 the CT and PFT supported his UIP diagnosis. He was totally focused on a biopsy and basically said you have 3-5 years with no known cure. I went for what I thought was a second opinion by a pulmonary and ended up with an appt to see a thoractic surgeon (who agreed with the diagnosis but was far less pro-biopsy). I was then told an appt would be made for second opinion with a specialist at Yale. That specialist ended up moving to Duke and stopped taking patients. My primary care told me to get into a research hospital and see a leading doctor in the field for a second opinion. I finally got in to see the ILD group at Beth Israel who confirmed the diagnosis and recommended me for the pirfenidone study. That study at the time required a lung biopsy and I had the VATS done in Oct 2006. I started in the pirfenidone study in Feb 2007. My VATS surgeon had a stapler malfunction and he had to hand suture my lung. I was on O2 after the surgery for several months. The symptoms listed on the first diagnosis included shortness of breath which I truly never experienced until after the VATS surgery. I continue to have some odd breathing noises when lying on my left side but not all the time. I’ll be entering the pirfenidone open label study at the conclusion of the current double blind trial. I was on NAC 600 before I entered the study but had to discontinue it and wash out prior to entering the clinical trial for pirfenidone. I am really thankful that my PFT results are still good and hope that the drug helps reduce the progression if detected early. As soon as I know which study group I was in I’ll be sure and post it Ken Baker UIP/IPF 12/05 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Bruce Moreland Sent: Wednesday, May 07, 2008 9:39 PM To: Breathe-Support Subject: Re: Peggy Ken I have a question that came to mind as I read the presentation materials. This is related to the graph showing your PFT's. Your PFT's are actually quite good so I was wondering what led to your diagnosis and then your VATS. I ask because I certainly was not diagnosed that early and I think that holds true for most members I've talked to. Doctors seem on the whole to not suspect lung disease and especially PF but instead think we're out of shape or overweight or old. > > > > > > The Presentation slides from all the presenters at the symposium May 3,2008 > have been posted on the Beth Israel Deaconess Medical Center ILD website > > > IPF <http://bidmc.harvard.edu/display.asp?leaf_id=19143> Patient Symposium, > Saturday May 3, 2008 > > > (I hope the above link works) > Each of the agenda items are links to the slides for that presentation. > > If you have trouble with that link you can go directly to the Interstitial > Lung Disease home page at: > http://bidmc.harvard.edu/display.asp?leaf_id=18180 > and scroll down to the bottom of the page and click on the link there. > > Ken Baker UIP/IPF 12/05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Ken You sure had a good primary to send you to a pulmonologist at the point he did. I think a six minute walk should be part of every physical. I'm glad for you that you got diagnosed early and had the opportunity for the trial and to pursue other things if you decide to but also glad you're still stable and in good condition. You're so fortunate to have had a good primary even if the first pulmonologist took the have a VATS and you're going to die approach. You're also a good VATS example as you took it because it was required for something else you wanted, but it did prove to be an invasive procedure and did have repercussions. I also see improvement since your VATS which is typical as it takes most of us a bit to get back to where we were before, if we do. I appreciate all the information you've shared. > > > > > > > > > > > > The Presentation slides from all the presenters at the symposium May > 3,2008 > > have been posted on the Beth Israel Deaconess Medical Center ILD > website > > > > > > IPF <http://bidmc. <http://bidmc.harvard.edu/display.asp?leaf_id=19143> > harvard.edu/display.asp?leaf_id=19143> Patient > Symposium, > > Saturday May 3, 2008 > > > > > > (I hope the above link works) > > Each of the agenda items are links to the slides for that > presentation. > > > > If you have trouble with that link you can go directly to the > Interstitial > > Lung Disease home page at: > > http://bidmc. <http://bidmc.harvard.edu/display.asp?leaf_id=18180> > harvard.edu/display.asp?leaf_id=18180 > > and scroll down to the bottom of the page and click on the link there. > > > > Ken Baker UIP/IPF 12/05 > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.