Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Dave: Actually, Rob is doing fairly well right now. With the gross hematuria having subsided and him having some microscopic hematuria, but his BUN and creatinine are perfect. I am on a support group board for the juvenile ankylosing spondylitis, (a form of juvenile arthritis), he at one time couldn't walk, and now is walking and doing fairly well but still has daily pain. He is on growth hormone, provided free by Lilly ($48,000 a year!) and his asthma is behaving itself for now! So I am counting my blessings. I have learned quite a lot from all of you about IGAN and since we think this is what Rob likely has, I am sticking around to continue educating myself. Since his labs are good we are holding off on a biopsy. He goes back to the nephrologist next month> They are seeing him every 3 months to check a UA and labs...so I think we are on top of things. He has had an IVP, renal ultrasound, CT of the kidneys, 24 hour urine, and gets monthly labs due to all the meds he is on for the other issues, so we are just holding steady. Thanks for your kindness and Take care!!! I have grown fond of all of you though I am really a lurker. I try to keep up with all thats going on and I think of you all and pray for you often. I'll be lurkin' around! and Rob 14, juvenile ankylosing spondylitis, growth issues, possible IGAN, asthma On Mon, 16 Feb 2004 00:26:36 -0000 " Dave " writes: > Hey , > > Sounds like you've got a load of things there - people on this board > are always here to help you through it ok? ) > > Dave > Re: 1000! - , , Connie, Cy, , > Walt, Dave > > > Pierre and all: > I have only been on this list for a few short months, and my son > is not > officially diagnosed with IGAN (no biopsy yet, labs are good, > gross > hematuria has ceased), but I have chosen to stay around. You all > are such > a source of inspiration to me in all areas of my life, not just my > son's > illnesses. > Bravo and applause! To a great bunch of people, working to help > each > other, despite their own trials. > and Rob 14, juvenile ankylosing spondylitis, growth issues, > possible IGAN, asthma > > On Fri, 13 Feb 2004 08:40:12 -0500 " Pierre L \(groups\) " > writes: > > By the way, > > > > I also want to emphasize again the role of and in > the > > early > > success of this group. Right from the beginning, and for most of > the > > group's > > existence, was instrumental in tirelessly answering every > > > message that > > came in and providing people with emotional support. Soon, > > > joined the > > team and quickly became indispensable as well. As the group and > the > > workload > > grew, we gradually added more moderators. Connie, Cy, and > > > Walt and > > more recently Dave also can be credited with much of the success > of > > this > > group. > > > > Because of all of them, it all runs so smoothly that most > members > > never > > realize the work that is done behind the scenes. > > > > , , Connie, , Walt, Cy and Dave, I simply cannot > > > thank you > > enough for all of your efforts. And of course, we have many > members > > who > > aren't officially moderators but who nevertheless are very > > important > > contributors of information and support to others. > > > > And finally, thanks to all of our members. You are the best > group of > > people > > I've ever been associated with in anything I've ever done. > > > > Pierre > > > > > > > > > > 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 5, 2004 Report Share Posted March 5, 2004 Hiya Martha, Yeah I haven't had a biopsy yet either - I am back at Neph in May and we'll talk about it again. I get very different views from my family doc and my neph so I'm just gonna talk to her and then see her view and then decide what to do! I don't see it as a biggie either way, so long as my labs are ok, do I need a label? Do I need what my scarring is? I don't know - being an accountant I can see a speadsheet coming I can see the formula now .... @if(scarring > 0.5, panic,sigh) Dave Re: 1000! - , , Connie, Cy, , > Walt, Dave > > > Pierre and all: > I have only been on this list for a few short months, and my son > is not > officially diagnosed with IGAN (no biopsy yet, labs are good, > gross > hematuria has ceased), but I have chosen to stay around. You all > are such > a source of inspiration to me in all areas of my life, not just my > son's > illnesses. > Bravo and applause! To a great bunch of people, working to help > each > other, despite their own trials. > and Rob 14, juvenile ankylosing spondylitis, growth issues, > possible IGAN, asthma > > On Fri, 13 Feb 2004 08:40:12 -0500 " Pierre L \(groups\) " > writes: > > By the way, > > > > I also want to emphasize again the role of and in > the > > early > > success of this group. Right from the beginning, and for most of > the > > group's > > existence, was instrumental in tirelessly answering every > > > message that > > came in and providing people with emotional support. Soon, > > > joined the > > team and quickly became indispensable as well. As the group and > the > > workload > > grew, we gradually added more moderators. Connie, Cy, and > > > Walt and > > more recently Dave also can be credited with much of the success > of > > this > > group. > > > > Because of all of them, it all runs so smoothly that most > members > > never > > realize the work that is done behind the scenes. > > > > , , Connie, , Walt, Cy and Dave, I simply cannot > > > thank you > > enough for all of your efforts. And of course, we have many > members > > who > > aren't officially moderators but who nevertheless are very > > important > > contributors of information and support to others. > > > > And finally, thanks to all of our members. You are the best > group of > > people > > I've ever been associated with in anything I've ever done. > > > > Pierre > > > > > > > > > > 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 5, 2004 Report Share Posted March 5, 2004 Hiya Martha, Yeah I haven't had a biopsy yet either - I am back at Neph in May and we'll talk about it again. I get very different views from my family doc and my neph so I'm just gonna talk to her and then see her view and then decide what to do! I don't see it as a biggie either way, so long as my labs are ok, do I need a label? Do I need what my scarring is? I don't know - being an accountant I can see a speadsheet coming I can see the formula now .... @if(scarring > 0.5, panic,sigh) Dave Re: 1000! - , , Connie, Cy, , > Walt, Dave > > > Pierre and all: > I have only been on this list for a few short months, and my son > is not > officially diagnosed with IGAN (no biopsy yet, labs are good, > gross > hematuria has ceased), but I have chosen to stay around. You all > are such > a source of inspiration to me in all areas of my life, not just my > son's > illnesses. > Bravo and applause! To a great bunch of people, working to help > each > other, despite their own trials. > and Rob 14, juvenile ankylosing spondylitis, growth issues, > possible IGAN, asthma > > On Fri, 13 Feb 2004 08:40:12 -0500 " Pierre L \(groups\) " > writes: > > By the way, > > > > I also want to emphasize again the role of and in > the > > early > > success of this group. Right from the beginning, and for most of > the > > group's > > existence, was instrumental in tirelessly answering every > > > message that > > came in and providing people with emotional support. Soon, > > > joined the > > team and quickly became indispensable as well. As the group and > the > > workload > > grew, we gradually added more moderators. Connie, Cy, and > > > Walt and > > more recently Dave also can be credited with much of the success > of > > this > > group. > > > > Because of all of them, it all runs so smoothly that most > members > > never > > realize the work that is done behind the scenes. > > > > , , Connie, , Walt, Cy and Dave, I simply cannot > > > thank you > > enough for all of your efforts. And of course, we have many > members > > who > > aren't officially moderators but who nevertheless are very > > important > > contributors of information and support to others. > > > > And finally, thanks to all of our members. You are the best > group of > > people > > I've ever been associated with in anything I've ever done. > > > > Pierre > > > > > > > > > > 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...
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