Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Hi B, I think I really went along pretty well until the late 80s when I started to have elevated BP, but even then for a decade from 87 to 97 I was just on Lisinopril for BP and was otherwise very asymptomatic. I really started to decline around 2000 and am currently at 18%. The first 25 or so years were really trouble free for me in terms of IgAN. The last few years once I hit 30% and below, it became harder to manage but really I count my blessings and thank God for His sustaining strength. He has used this for His glory so I cannot complain. I hope Elisabet remains stable much longer than I did! Thank you for your prayers for Jim and his family. This continues to be very difficult for all of us. Re: I'm new here - ? for Dear , For those of us with children who have IgA (especially girls) it is very encouraging to hear that even though you had symptoms early on, that you still married, had two children, worked, ran etc. I guess I can't help wondering at what stage did your IgA require more intense medical treatment (BP meds, Prednisone, Cellcept, etc.) I think you actually said once that you were never on Prednisone (forgive me, I can't remember). It's hard not to wonder sometimes about the future (although my husband and I try really hard not to go there, but to trust God instead) for our daughter. For the kids that go into remission after prednisone or other treatment, does is typically come back as they get older? I know no one can say how any one person will progress. I'd be curious to hear from people that were diagnosed and treated as children that are adults now. I guess our concern is that the earlier one is diagnosed, the more likely they are to reach ESRD eventually, just given how many years lay ahead. Still praying for Jim and his family, B, Elisabet's mom, 12 ------------------------- To Cwaelty, I'm so sorry to hear about your daughter. My daughter was diagnosed two years ago when she was 10. You've found a great resouce in this site. There's a wealth of information in this group and on the sister site: www.igan.ca It sounds like you are working with great doctors too. I found educating myself about the disease really helped us cope with the diagnosis. Best wishes to you and your daughter. B. > > Hi CWAELTY, > > A very warm welcome to the group to you and your daughter. I was younger > than your daughter when I first had symptoms of IgAN and HSP. That was over 30 > years ago and I am still not yet on dialysis. I hope she can stay stable > for decades to come too. > > I married, raised two daughters, worked full time, was very active in my > church, lead and participated Bible Studies and up to the past month or so ran > 3-4 miles four days a week. I am currently at 18% function, and having some > problems but not really until the past couple of years. I hope that is of > some encouragement to you. > > Welcome again! > > > > In a message dated 3/27/2005 8:00:46 A.M. Pacific Standard Time, > cwaelty@c... writes: > > > Hello everyone, Happy Easter > My daughter was just diagnosed with HSP / IGA Nephropathy, 16 years > old, other wise a very healthy vibrant young girl. My heart is > breaking and I now need to find out as much information on IGAN as > soon as possible. We are dealing with Childrens Hospital in Boston > and s Hopkins in Baltimore land. Any help and info would be > greatly appreciated. > Thank you To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 ESRD means End stage renal disease. It us used in reference to your kidney reaching a point where they can no longer adequately support life and intervention (either dialysis or a transplant) are required. With IgAN, some 30-50% reach ESRD, which means the majority (50-70%) do not. RE: I'm new here - ? for Good morning In your post you mentioned " ESRD " could you please tell me what that means? Thank you Cathy Quote Link to comment Share on other sites More sharing options...
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