Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 from the Dr. Half of what he said I dont even understand. But...the carotid artery ultrasound was clear, whoopee, the ecko was clear again whoopee. Then there is the MRI... I have ischemic changes, cerebral atrophy that may represent an old infarct. Which I think he said meant that I may have had a small stroke. Or it could be clotting with decreased blood flow. My moniter showed that I had two good episodes of svt (Ithink) so my meds are not working, got a new one, that is a beta blocker. Now he is checking to see if it is due to vasculitis. He is also checking my thryoid. Thats all for now. Jeana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Jeana, I will continue to keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com I'm home > from the Dr. Half of what he said I dont even understand. But...the > carotid artery ultrasound was clear, whoopee, the ecko was clear > again whoopee. Then there is the MRI... > I have ischemic changes, cerebral atrophy that may represent an old > infarct. Which I think he said meant that I may have had a small > stroke. Or it could be clotting with decreased blood flow. My moniter > showed that I had two good episodes of svt (Ithink) so my meds are > not working, got a new one, that is a beta blocker. > Now he is checking to see if it is due to vasculitis. He is also > checking my thryoid. Thats all for now. > Jeana > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Jeana, I will continue to keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com I'm home > from the Dr. Half of what he said I dont even understand. But...the > carotid artery ultrasound was clear, whoopee, the ecko was clear > again whoopee. Then there is the MRI... > I have ischemic changes, cerebral atrophy that may represent an old > infarct. Which I think he said meant that I may have had a small > stroke. Or it could be clotting with decreased blood flow. My moniter > showed that I had two good episodes of svt (Ithink) so my meds are > not working, got a new one, that is a beta blocker. > Now he is checking to see if it is due to vasculitis. He is also > checking my thryoid. Thats all for now. > Jeana > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 well jeana i'm with you dont know all those words and what it is them dr but will continue prayers for you my friend and love you lots cherylJeana wrote: from the Dr. Half of what he said I dont even understand. But...the carotid artery ultrasound was clear, whoopee, the ecko was clear again whoopee. Then there is the MRI...I have ischemic changes, cerebral atrophy that may represent an old infarct. Which I think he said meant that I may have had a small stroke. Or it could be clotting with decreased blood flow. My moniter showed that I had two good episodes of svt (Ithink) so my meds are not working, got a new one, that is a beta blocker.Now he is checking to see if it is due to vasculitis. He is also checking my thryoid. Thats all for now. Jeana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2007 Report Share Posted September 3, 2007 , I am glad you made it back safely. How exciting that you get to participate in a film project. Did you show cleavage. When are they going to tell you if you are getting a placebo or the real thing? I had no idea that the Perfenidone studies had been going on for 10 years. I agree that the variation in PFT tests are alarming between different testing facilities. I also think the 6 minute walk is a ridiculous method of testing. If we only had to walk slowly with someone carrying our load for us....but we have to get up and down, get into cars, life laundry and groceries, etc. I am happy that you are doing so well. You have been through so much. Stay strong. Hugs, Joyce D.>> > I'm home from my week trip to the NIH for my year follow up in the HPS> Pirfenidone trial. Boy did I have a great week! I can't stop smiling.> > I went for the drug trial evaluation when my FVC fell from 96 to 69 in> about six months time. My DLCO was around 55 to 60. When I actually> entered the trial, my FVC had gone up to 82 (These PFT machines seem to> me to have a lot of variation institution to institution.) For the first> time there was fibrosis evident on my CT scan, although very mild.> > So, I've been taking these capsules for a year now (obviously not sure> if I'm on the drug or placebo). My FVC went up to 90 on my last two> visits, and this time was at 94!!!!!!!!!! I'm practically dancing.> > The fibrosis on my CT scan has advanced slightly, but we're talking ever> so slightly. The doctors declared it stable. My DLCO is still around 60,> so essentially unchanged.> > I'm a little puzzled still about the six minute walk test. Because I had> this film crew following me all week, I wasn't able to spend as much> time going over test results as I'd have liked. Our nurse practitioner> told me my six minute walk was fine - but I'm not sure.> > I watched the little monitor on my wrists and it went down to 82. He> says it didn't go down much, but I think he's thinking of the one we did> for the cameras. I wasn't walking as fast for that one because the guy> with the camera was walking backwards in front of me. So, I only fell to> 90 on that one.> > Next week when the rest of my test results come in, we'll chat on the> phone and I'll clear that up.> > It does seem there's something weird going on with my immune system. My> Crohn's is back, but mild, and my thyroid is all messed up - so those> things help explain some of the massave fatigue I've had lately.> > tells me I didn't tell you guys about the film crew. The HPS> Network has been working with a filmmaker at the Sanford Center for> Bioethics for about a year now. They are making a film called "The> Citizen Scientists." It's about how patient advocacy groups, especially> ones for ultra rare orphan diseases, are helping to advance scientific> research for the greater community, as well as for ourselves.> > They are following three disease groups - the HPS Network and two> others. The HPS Network fits into the storyline because of our work with> the NIH on Pirfenidone. Some of our members have been on Pirfenidone for> as long as 10 years.> > So, that's why they were with me. They've filmed our conference. They> didn't film, but they hung out with us at the American Thoracic Society.> They've filmed in the Appell household, home to our "office." They've> filmed , our president's daughter, at NIH, then me, and they're> wrapping up by going to Puerto Rico to film our outreach there.> > Initially the film is only going to be 30 minutes and will be used to> facilitate discussions in medical schools. But, they're hoping to use> that film to raise enough money to do a much longer film for air on PBS.> Everybody keep your fingers crossed! HPS could use the exposure, and so> could PF.> > > > P.S. I had a talk with our researcher working on the pulmonary fibrosis> biomarker. He's had some exciting results with HPS patients and is now> comparing with IPF patients - he thinks he'll at least have an abstract> published soon. When he does, I'll pass it along.> > We also got to visit Dr. Gahl's (the HPS primary investigator) lab at> the NIH. That was kind of neat - I posted some pics on my blog.> > And, as far as the life expectancy issue goes - five years ago this week> I was told I had five years, maybe seven if I was lucky. And, 14 years> ago my parents were told it was very unlikely I'd survive my bowel> surgery, that the chances were I'd bleed out during surgery (because of> the bleeding problems with HPS.) My family even made plans with the> funeral home, bought a plot etc. Here I am!> > www.heatherkirkwood.blogspot.com> <http://www.heatherkirkwood.blogspot.com>> > Hermansky-Pudlak Syndrome albinism/PF 06> Quote Link to comment Share on other sites More sharing options...
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