Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Hi Everyone! I went back to Emory yesterday for my doctor visit for week 18 of the STEP Trial. I had PFTs, 6MW, questionaires, blood tests, and saw Dr. . & Tamra. All in all, I am still basically the same, some numbers are up a tiny little bit. I walked 290 meters whereas on August 1st I walked 280 meters and I finished the walk both times on room air with no drop in sats below 83. I had a 3 minute rrecovery to 95 both times. And I drove myself, by myself to Atlanta for the appointment and everyone was shocked that no one brought me. Today I am tired but I feel fine. I am taking the day off! (LOL) I met the doctor yesterday while I was at Emory who is the principal investigator oon the study involving a patient and spouse ( or household partner). Joe & Joanie are in this study already. This study seeks to find a cause of IPF. They will be looking for evidence of infection with three herpes viruses that do not normally cause diseases in people with a healthy immune system--Epstein-Barr virus, cytomegalovirus, and human herpes virus 8. Eddie has agreed to be in this study which I would like to ask this doctor if we can wait until January or after to start. I posted a few weeks ago about cytomegalovirus, which is a virus which I suffered from in 1984 when was 17 months old. I am excited to see that this virus is possibly the cause of my IPF. That is why I want to be in the study. The spouse is considered a "control" he or she has the healthy immune system. Hope everyone has a good day today and hope that everyone in the path of Hurricane Ike is safe. Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Jane .. good news about your tests! You can stand more of that I'm sure. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Study Visit Week 18 Hi Everyone! I went back to Emory yesterday for my doctor visit for week 18 of the STEP Trial. I had PFTs, 6MW, questionaires, blood tests, and saw Dr. . & Tamra. All in all, I am still basically the same, some numbers are up a tiny little bit. I walked 290 meters whereas on August 1st I walked 280 meters and I finished the walk both times on room air with no drop in sats below 83. I had a 3 minute rrecovery to 95 both times. And I drove myself, by myself to Atlanta for the appointment and everyone was shocked that no one brought me. Today I am tired but I feel fine. I am taking the day off! (LOL) I met the doctor yesterday while I was at Emory who is the principal investigator oon the study involving a patient and spouse ( or household partner). Joe & Joanie are in this study already. This study seeks to find a cause of IPF. They will be looking for evidence of infection with three herpes viruses that do not normally cause diseases in people with a healthy immune system--Epstein-Barr virus, cytomegalovirus, and human herpes virus 8. Eddie has agreed to be in this study which I would like to ask this doctor if we can wait until January or after to start. I posted a few weeks ago about cytomegalovirus, which is a virus which I suffered from in 1984 when was 17 months old. I am excited to see that this virus is possibly the cause of my IPF. That is why I want to be in the study. The spouse is considered a "control" he or she has the healthy immune system. Hope everyone has a good day today and hope that everyone in the path of Hurricane Ike is safe. Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Jane, Stable and better is great. You are just a super woman going by yourself. I know the drive home was tiring. Rest today. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi Everyone!I went back to Emory yesterday for my doctor visit for week 18 of the STEP Trial. I had PFTs, 6MW, questionaires, blood tests, and saw Dr. . & Tamra. All in all, I am still basically the same, some numbers are up a tiny little bit. I walked 290 meters whereas on August 1st I walked 280 meters and I finished the walk both times on room air with no drop in sats below 83. I had a 3 minute rrecovery to 95 both times. And I drove myself, by myself to Atlanta for the appointment and everyone was shocked that no one brought me. Today I am tired but I feel fine. I am taking the day off! (LOL)I met the doctor yesterday while I was at Emory who is the principal investigator oon the study involving a patient and spouse ( or household partner). Joe & Joanie are in this study already. This study seeks to find a cause of IPF. They will be looking for evidence of infection with three herpes viruses that do not normally cause diseases in people with a healthy immune system--Epstein-Barr virus, cytomegalovirus, and human herpes virus 8. Eddie has agreed to be in this study which I would like to ask this doctor if we can wait until January or after to start. I posted a few weeks ago about cytomegalovirus, which is a virus which I suffered from in 1984 when was 17 months old. I am excited to see that this virus is possibly the cause of my IPF. That is why I want to be in the study. The spouse is considered a "control" he or she has the healthy immune system. Hope everyone has a good day today and hope that everyone in the path of Hurricane Ike is safe.ToodlesJane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Jane, Happy to hear that you remain stable! The study they are conducting at Emory is very interesting. These viruses are among the most common known to mankind. Virtually everyone in the US is exposed to these at some point in their lives. Everyone who's ever had an oral cold sore has been exposed to a variety of herpes. I had Epstein-Barr in the form of infectious mononucleosis when I was a Junior in high school. Now that I know my immune system is abnormal it does make one wonder if the Epstein Barr planted the seeds of my fibrosis all those years ago. It really is fascinating stuff isn't it? I hope you and Eddy get into the study and can start at the time you want. Can't wait to see you at Peggy's!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Study Visit Week 18 Hi Everyone! I went back to Emory yesterday for my doctor visit for week 18 of the STEP Trial. I had PFTs, 6MW, questionaires, blood tests, and saw Dr. . & Tamra. All in all, I am still basically the same, some numbers are up a tiny little bit. I walked 290 meters whereas on August 1st I walked 280 meters and I finished the walk both times on room air with no drop in sats below 83. I had a 3 minute rrecovery to 95 both times. And I drove myself, by myself to Atlanta for the appointment and everyone was shocked that no one brought me. Today I am tired but I feel fine. I am taking the day off! (LOL) I met the doctor yesterday while I was at Emory who is the principal investigator oon the study involving a patient and spouse ( or household partner). Joe & Joanie are in this study already. This study seeks to find a cause of IPF. They will be looking for evidence of infection with three herpes viruses that do not normally cause diseases in people with a healthy immune system--Epstein- Barr virus, cytomegalovirus, and human herpes virus 8. Eddie has agreed to be in this study which I would like to ask this doctor if we can wait until January or after to start. I posted a few weeks ago about cytomegalovirus, which is a virus which I suffered from in 1984 when was 17 months old. I am excited to see that this virus is possibly the cause of my IPF. That is why I want to be in the study. The spouse is considered a "control" he or she has the healthy immune system. Hope everyone has a good day today and hope that everyone in the path of Hurricane Ike is safe. Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl 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.