Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Hi Teneya, I think it always hits me the hardest when a little one gets diagnosed with IgAN. As a mother myself, I know it has to break your heart to hear your son has a chronic illness. Walt already gave you a great reply which I trust was very encouraging, and I think you will find a number of parents here who have children with IgAN. I do think it seems like the young ones seem to respond very well to treatment. Just this week Crystal reported that her daughter is a success story. I really do pray that is the case with your son. Have they discussed treatments with you yet? We have some Moms whose children are just on Ace inhibitors, and others who have gone the route of Prednisone, depending on lab results at the time of diagnosis. I was first symptomatic as a teen, but I know I had protein in my urine that I can trace back to a severe illness when I was 5 years old. I am now in my 40s, and have been extremely active and had a fulfilling life including getting married, raising two children, having a successful career, being very active in my church and even to this day I run three or four days a week for three miles. I am currently down to 20% kidney function but still am working full time and am not on dialysis. I hope that gives you some encouragement that your son can too have a very full life. is another of our members, who unfortunately did reach end stage renal failure as a college student, but has had a successful transplant, is back in Nursing school full time and even recently engaged over her spring break. So, even if the worst does happen, those with IgAN tend to do very well. Please know that there are many people here who are just waiting to encourage you and share their experiences with you. Please don't hesitate to jump in and ask any questions you may have. Welcome again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Hi Teneya, I think it always hits me the hardest when a little one gets diagnosed with IgAN. As a mother myself, I know it has to break your heart to hear your son has a chronic illness. Walt already gave you a great reply which I trust was very encouraging, and I think you will find a number of parents here who have children with IgAN. I do think it seems like the young ones seem to respond very well to treatment. Just this week Crystal reported that her daughter is a success story. I really do pray that is the case with your son. Have they discussed treatments with you yet? We have some Moms whose children are just on Ace inhibitors, and others who have gone the route of Prednisone, depending on lab results at the time of diagnosis. I was first symptomatic as a teen, but I know I had protein in my urine that I can trace back to a severe illness when I was 5 years old. I am now in my 40s, and have been extremely active and had a fulfilling life including getting married, raising two children, having a successful career, being very active in my church and even to this day I run three or four days a week for three miles. I am currently down to 20% kidney function but still am working full time and am not on dialysis. I hope that gives you some encouragement that your son can too have a very full life. is another of our members, who unfortunately did reach end stage renal failure as a college student, but has had a successful transplant, is back in Nursing school full time and even recently engaged over her spring break. So, even if the worst does happen, those with IgAN tend to do very well. Please know that there are many people here who are just waiting to encourage you and share their experiences with you. Please don't hesitate to jump in and ask any questions you may have. Welcome again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 , You are such an inspiration to all of us! You completely knock my socks off. I never knew about you tracing your renal history back to being five! When you have (hah!) a spare moment, I would love to hear that story. Love, Cy Re: Welcome Teneya > Hi Teneya, > > I think it always hits me the hardest when a little one gets diagnosed with > IgAN. As a mother myself, I know it has to break your heart to hear your son > has a chronic illness. > > Walt already gave you a great reply which I trust was very encouraging, and I > think you will find a number of parents here who have children with IgAN. I > do think it seems like the young ones seem to respond very well to treatment. > Just this week Crystal reported that her daughter is a success story. I > really do pray that is the case with your son. > > Have they discussed treatments with you yet? We have some Moms whose > children are just on Ace inhibitors, and others who have gone the route of > Prednisone, depending on lab results at the time of diagnosis. > > I was first symptomatic as a teen, but I know I had protein in my urine that > I can trace back to a severe illness when I was 5 years old. I am now in my > 40s, and have been extremely active and had a fulfilling life including getting > married, raising two children, having a successful career, being very active > in my church and even to this day I run three or four days a week for three > miles. I am currently down to 20% kidney function but still am working full > time and am not on dialysis. I hope that gives you some encouragement that your > son can too have a very full life. > > is another of our members, who unfortunately did reach end stage renal > failure as a college student, but has had a successful transplant, is back in > Nursing school full time and even recently engaged over her spring break. > So, even if the worst does happen, those with IgAN tend to do very well. > > Please know that there are many people here who are just waiting to encourage > you and share their experiences with you. Please don't hesitate to jump in > and ask any questions you may have. > > Welcome again, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 , You are such an inspiration to all of us! You completely knock my socks off. I never knew about you tracing your renal history back to being five! When you have (hah!) a spare moment, I would love to hear that story. Love, Cy Re: Welcome Teneya > Hi Teneya, > > I think it always hits me the hardest when a little one gets diagnosed with > IgAN. As a mother myself, I know it has to break your heart to hear your son > has a chronic illness. > > Walt already gave you a great reply which I trust was very encouraging, and I > think you will find a number of parents here who have children with IgAN. I > do think it seems like the young ones seem to respond very well to treatment. > Just this week Crystal reported that her daughter is a success story. I > really do pray that is the case with your son. > > Have they discussed treatments with you yet? We have some Moms whose > children are just on Ace inhibitors, and others who have gone the route of > Prednisone, depending on lab results at the time of diagnosis. > > I was first symptomatic as a teen, but I know I had protein in my urine that > I can trace back to a severe illness when I was 5 years old. I am now in my > 40s, and have been extremely active and had a fulfilling life including getting > married, raising two children, having a successful career, being very active > in my church and even to this day I run three or four days a week for three > miles. I am currently down to 20% kidney function but still am working full > time and am not on dialysis. I hope that gives you some encouragement that your > son can too have a very full life. > > is another of our members, who unfortunately did reach end stage renal > failure as a college student, but has had a successful transplant, is back in > Nursing school full time and even recently engaged over her spring break. > So, even if the worst does happen, those with IgAN tend to do very well. > > Please know that there are many people here who are just waiting to encourage > you and share their experiences with you. Please don't hesitate to jump in > and ask any questions you may have. > > Welcome again, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 In a message dated 5/23/2004 7:39:07 PM Pacific Daylight Time, cyashleywebb@... writes: > I never knew about you tracing your renal history back to being five! > When you have (hah!) a spare moment, I would love to hear that story. > Love, > > Cy > Hi Cy, OK since you asked, here it is: When I was 5, I had gross hematuria and was very ill for nearly a month. At that time, I did not get a diagnosis. I never was checked again until a routine test as a teenager (around 15??) showed protein in my urine. I was referred to a Nephrologist who said it was nothing to worry about, probably the result of a recent strept infection, and I did not need to be monitored. I began having high blood pressure in the mid 70's, along with extremely high cholesterol, around 325 despite weighing about 115 (I am 120 now) at the time and being 5 ft 6.5 inches, and eating a very low fat diet. I was treated for the cholesterol, but not for the protein. Then I had two more episodes of hematuria in the late 70's, but was not referred for a biopsy until 1987. That one came back with " probable IgAN. " I was followed on an annual basis for close to 10 years, and was on just one BP med all that time, which was lisinopril. In 1997, I got a new Nephrologist when my old one retired, and he requested a new biopsy which gave a definitive diagnosis of IgAN. I was about 50% function in 97. I have never had any more episodes of gross hematuria since the late 70s, but BP has become harder to manage, with treatment requiring 4 BP meds a day now, plus the Zocor and Cellcept I take. Since 2000, I have been on Procrit for anemia, and fatigue has become harder to manage. I am currently at 20% renal function, but as you know still work full time, manage a house hold, run three miles 3-4 days a week, and participate in a Bible Study group one night a week. I have had to drop out of my other ministries over the past year and a half or so though. I was more active but these last 18 months, work takes about all I have. Weekends are mostly spend recovering from the energy I have expended during the week. I need 10+ hours of sleep a night now, but overall I think I am doing pretty well for the function I have left. Good thing both my girls are grown, and now I only have my youngest on summer breaks from college. I don't know how some of you at my level with young children do it. Just baby-sitting for friends or family for one evening wipes me out :-) That is my story, so now you know! Quote Link to comment Share on other sites More sharing options...
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