Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 Emma Glad to see you got the same number of tubes of blood taken I did 18 months ago there. 22 is still my record, though UTSW took 13 or 14 last time. Yes, the CT scans that seem to be the protocol within the IPF centers are much different and much more informative. I'm guessing you started with Cathy Brown who I think is wonderful. I also liked Dr. Strek. I know you're anxious about next week but I think you'll find just having good information from them will be very helpful to you. Dr. Strek's reports are detailed and straight forward and tell you clearly what she believes and why. > > Good Morning Friends, > Just wanted to let you know I spent most of yesterday at the University of Chicago Pulmonary Center and I was so impressed. Started out with an hour meeting with the head nurse just talking about my medical history then on to get a CT scan like none I have ever had before. From there I spent a hour in the PFT lab breathing and walking and so on. The last appt. was the lab where they took 22 tubes of blood. I asked her if I got a blood transfusion when she finished! > The nurse said the entire pulmonary team will meet on Monday and go over all my records (the file I brought with and all the new tests) and then I go back next Wednesday for a meeting with Dr. Strek. I must say I feel very nervous but I am taking my husband and two daughters for support. > We got out of Chicago just in time as they were getting a winter storm as we left for Indianapolis. We are getting the same storm now in Indy but we are safe at home. > > So glad I found all of you!! > > Patti, 59, Indianapolis, IPF 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 Yes Bruce......I did meet with Cathy Brown......very informative meeting......I was discouraged with the PFT.....I usually don't cough during them but for some reason I started coughing during the first set of tests so I know I did just terrible. I will let you know what I find out when I meet Dr. Strek on Wednesday. Thanks for all your replies to everyone.....you are very knowledgeable and I enjoying reading your posts. Patti, 59, Indianapolis, IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 Patti: I think you are referring to the University of Chicago. If so Kathy Brown is an RN and the MDP you mention is the Number 2 Doctor on pulmonary staff. If I am right on the above I met with Kathy Brown on Dec 8. I only remenber Kathy. She really tried to educate me-- a big improvement over anyone else I have discussed IPF with. I am attempting to enroll in one of the four study groups for IPF the U of C is conducting. I do not want to participate in the Panther Study and I really do not care if I get only a placebal (sp). I would like to know how fast my IPF is progressing and what I might do to slow it down. Prior to Kathy, I have found no one interested in giving guidance-- only you have been DXs with IPFand we will see in three or six months. You should use Prednisone and as my first year past--absolutely no Prednisone, never ever. Actually Prednisone stopped my month long totally uncontrolable caugh in the beginning and it help me eat food when I was losing weight and did not want to eat. I was given a CRT-Skan, a breathing test, a six minute walk and I donated 18 blood samples. I am worried about the Skan as my lungs were not clear due the effort I made getting to Chicago. Kathy showed me my Skan and my earlier Skans were not made available to me. I was impressed by how very professional the U. of C. staff was. I will meet with my MDP on January 11. It was more like the light of day compared to the fog I have experienced in my home area. Burns IPF 10-2008. Holland, Michigan Subject: Re: Chicago TripTo: Breathe-Support Date: Friday, December 11, 2009, 11:23 AM Yes Bruce......I did meet with Cathy Brown......very informative meeting..... .I was discouraged with the PFT.....I usually don't cough during them but for some reason I started coughing during the first set of tests so I know I did just terrible. I will let you know what I find out when I meet Dr. Strek on Wednesday. Thanks for all your replies to everyone.... .you are very knowledgeable and I enjoying reading your posts. Patti, 59, Indianapolis, IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 , Can you believe I was there the same day as you, Dec 8th. Perhaps we passed each other as I had all the same tests. I was so impressed with University of Chicago. It was a long drive up from Indianapolis but within just minutes with Cathy Brown, I felt I was in the right place. I return on Weds for all my results. At this time I am not on O2 or any medications and I still feel just fine but my stats have dropped this year. I shall let you know. I signed up for just one study with Dr. North. How come you got away with only 18 tubes of blood....they took 22 from me!! Patti, 59, Indianapolis, IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Patti: I need a medical dictionary and my once good writing skills. My brother died with IPF after having a lung trans-plant 7-2008. He was an MD, schooled at IU in Indy. He was a super doctor much more intelligent than me. He lasted only 22 months with IPF. He did not reach age 70. I learned I had IPF 10-2007. Now I wished I had tried harder to learn about IPF from him. He was not afraid of Pred, and he developed severe osteo problems. We think my Mother and Father both died with Farmer's Lung. They lasted 15 years or more with serious lung problems. Our family lived in Ligonier, IN. I sometimes wish I had Farmer's lung instead of IPF. I have some upper respiratory problems I do understand. I am taking shots for allergies--something new to me after IPF. I exercise my arms and legs on a stationary 30 minutes each day. I can still blow out the six minute walk. However, the white stuff in my lungs and nasal-cavities gives me some miserable hours each day. I had a mold problem in my house this summer for about three months and saving my house did not help with IPF. I make an effort to learn why some folks survive longer with IPF than others. It is a big mystery to me. I will be interested in what you learn. Thanks for replying to me. Burns. Subject: Re: Re: Chicago TripTo: Breathe-Support Date: Saturday, December 12, 2009, 10:32 AM , Can you believe I was there the same day as you, Dec 8th. Perhaps we passed each other as I had all the same tests. I was so impressed with University of Chicago. It was a long drive up from Indianapolis but within just minutes with Cathy Brown, I felt I was in the right place. I return on Weds for all my results. At this time I am not on O2 or any medications and I still feel just fine but my stats have dropped this year. I shall let you know. I signed up for just one study with Dr. North. How come you got away with only 18 tubes of blood....they took 22 from me!! Patti, 59, Indianapolis, IPF 2007 Quote Link to comment Share on other sites More sharing options...
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