Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 I am so disappointed you didn't get better news. I know how hard it is to hope for good news and to be disappointed. Just know that we are here for you to support and encourage you, and that you can vent anytime you need to. One of the verses I keep on my computer is Romans 12:12 which says " be joyful in hope, patient in affliction, and faithful in prayer " That brings such comfort to me, and I hope it might bring you some comfort right now too. In a message dated 2/19/2004 4:38:52 PM Pacific Standard Time, yipee_ladybug@... writes: > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 I am so disappointed you didn't get better news. I know how hard it is to hope for good news and to be disappointed. Just know that we are here for you to support and encourage you, and that you can vent anytime you need to. One of the verses I keep on my computer is Romans 12:12 which says " be joyful in hope, patient in affliction, and faithful in prayer " That brings such comfort to me, and I hope it might bring you some comfort right now too. In a message dated 2/19/2004 4:38:52 PM Pacific Standard Time, yipee_ladybug@... writes: > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 I am so disappointed you didn't get better news. I know how hard it is to hope for good news and to be disappointed. Just know that we are here for you to support and encourage you, and that you can vent anytime you need to. One of the verses I keep on my computer is Romans 12:12 which says " be joyful in hope, patient in affliction, and faithful in prayer " That brings such comfort to me, and I hope it might bring you some comfort right now too. In a message dated 2/19/2004 4:38:52 PM Pacific Standard Time, yipee_ladybug@... writes: > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 I'm sorry to hear about that but I guess there's one more thing you can do. They said that laughter is the best medicine and even if it does not have any good effect on IgAN, at least it does your heart a lot of good...and to the baby too. That's what I do when I worry too much with my son's condition. I pray, tell him I love him, then look for a good joke or watch something funny. I hope you feel better. > >Reply-To: iga-nephropathy >To: iga-nephropathy >Subject: neph appt today >Date: Thu, 19 Feb 2004 23:47:10 -0000 >MIME-Version: 1.0 >X-Originating-IP: 24.71.223.143 >X-Sender: yipee_ladybug@... >Received: from n35.grp.scd.yahoo.com ([66.218.66.103]) by >mc3-f15.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Thu, 19 Feb 2004 >15:47:25 -0800 >Received: from [66.218.66.95] by n35.grp.scd.yahoo.com with NNFMP; 19 Feb >2004 23:47:16 -0000 >Received: (qmail 87581 invoked from network); 19 Feb 2004 23:47:12 -0000 >Received: from unknown (66.218.66.166) by m7.grp.scd.yahoo.com with QMQP; >19 Feb 2004 23:47:12 -0000 >Received: from unknown (HELO n2.grp.scd.yahoo.com) (66.218.66.75) by >mta5.grp.scd.yahoo.com with SMTP; 19 Feb 2004 23:47:12 -0000 >Received: from [66.218.67.181] by n2.grp.scd.yahoo.com with NNFMP; 19 Feb >2004 23:47:11 -0000 >X-Message-Info: JGTYoYF78jEyQ8ZXZSfe99OCpY/Q15U3 >X-eGroups-Return: >sentto-2346229-24562-1077234434-cyncparas=hotmail.com@... >X-Apparently-To: iga-nephropathy >Message-ID: <c13htu+a9fueGroups> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.218.66.75 >X-Yahoo-Profile: yipee_ladybug >Mailing-List: list iga-nephropathy ; contact >iga-nephropathy-owner >Delivered-To: mailing list iga-nephropathy >Precedence: bulk >List-Unsubscribe: <mailto:iga-nephropathy-unsubscribe > >Return-Path: >sentto-2346229-24562-1077234434-cyncparas=hotmail.com@... >X-OriginalArrivalTime: 19 Feb 2004 23:47:25.0077 (UTC) >FILETIME=[b9A16450:01C3F742] > >I had an appt with my neph today....my creatinine level has >increased again to 290. He's talking about putting me on high dose >Prednisone....if I'm not pregnant. > >As with every neph appt, I'm always numb and in shock from the >news. And angry and frustrated and discouraged and unhappy. Why >does it take 10 years to for my kidney function to drop 30% but only >2 years to drop 40% more? And is there anything in my lifestyle >that I could change to improve it? My neph shakes his head. >Nothing. There's nothing I can do but wait for kidney failure it >seems. I feel hopeless. > >I'm trying to think positive thoughts right now, but it's not really >happening. Anyways, I hope this vent will make me feel better. >Thanks for listening. > _________________________________________________________________ Stay informed on Election 2004 and the race to Super Tuesday. http://special.msn.com/msn/election2004.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 I'm sorry to hear about that but I guess there's one more thing you can do. They said that laughter is the best medicine and even if it does not have any good effect on IgAN, at least it does your heart a lot of good...and to the baby too. That's what I do when I worry too much with my son's condition. I pray, tell him I love him, then look for a good joke or watch something funny. I hope you feel better. > >Reply-To: iga-nephropathy >To: iga-nephropathy >Subject: neph appt today >Date: Thu, 19 Feb 2004 23:47:10 -0000 >MIME-Version: 1.0 >X-Originating-IP: 24.71.223.143 >X-Sender: yipee_ladybug@... >Received: from n35.grp.scd.yahoo.com ([66.218.66.103]) by >mc3-f15.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Thu, 19 Feb 2004 >15:47:25 -0800 >Received: from [66.218.66.95] by n35.grp.scd.yahoo.com with NNFMP; 19 Feb >2004 23:47:16 -0000 >Received: (qmail 87581 invoked from network); 19 Feb 2004 23:47:12 -0000 >Received: from unknown (66.218.66.166) by m7.grp.scd.yahoo.com with QMQP; >19 Feb 2004 23:47:12 -0000 >Received: from unknown (HELO n2.grp.scd.yahoo.com) (66.218.66.75) by >mta5.grp.scd.yahoo.com with SMTP; 19 Feb 2004 23:47:12 -0000 >Received: from [66.218.67.181] by n2.grp.scd.yahoo.com with NNFMP; 19 Feb >2004 23:47:11 -0000 >X-Message-Info: JGTYoYF78jEyQ8ZXZSfe99OCpY/Q15U3 >X-eGroups-Return: >sentto-2346229-24562-1077234434-cyncparas=hotmail.com@... >X-Apparently-To: iga-nephropathy >Message-ID: <c13htu+a9fueGroups> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.218.66.75 >X-Yahoo-Profile: yipee_ladybug >Mailing-List: list iga-nephropathy ; contact >iga-nephropathy-owner >Delivered-To: mailing list iga-nephropathy >Precedence: bulk >List-Unsubscribe: <mailto:iga-nephropathy-unsubscribe > >Return-Path: >sentto-2346229-24562-1077234434-cyncparas=hotmail.com@... >X-OriginalArrivalTime: 19 Feb 2004 23:47:25.0077 (UTC) >FILETIME=[b9A16450:01C3F742] > >I had an appt with my neph today....my creatinine level has >increased again to 290. He's talking about putting me on high dose >Prednisone....if I'm not pregnant. > >As with every neph appt, I'm always numb and in shock from the >news. And angry and frustrated and discouraged and unhappy. Why >does it take 10 years to for my kidney function to drop 30% but only >2 years to drop 40% more? And is there anything in my lifestyle >that I could change to improve it? My neph shakes his head. >Nothing. There's nothing I can do but wait for kidney failure it >seems. I feel hopeless. > >I'm trying to think positive thoughts right now, but it's not really >happening. Anyways, I hope this vent will make me feel better. >Thanks for listening. > _________________________________________________________________ Stay informed on Election 2004 and the race to Super Tuesday. http://special.msn.com/msn/election2004.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Unfortunately, that's usually how it is with kidney disease. You tend to lose kidney function faster the less function you have. This is because the remaining good nephrons have to do the work of the non-functional ones. This combines with the kidney disease itself and the higher blood pressure to wear them down even faster. I'm sure your nephrologist would love to be able to say, " Look, do this and it will help prevent it " . But they know from their experience with hundreds of patients that this is what happens. I don't know anything that can prevent it either (if there was, I wouldn't be on dialysis myself), but a proper pre-dialysis renal diet can certainly help to make you feel better in the meantime. If you're at about 30%, that's the right time to start (ask your neph to refer you to a renal dietician though - don't do it on your own). Pierre neph appt today > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I don't know why our bodies does what it does i have long given up trying to figure it out. But I do know that it is hard to stay postive, when you get no hope from the doctor. Some days I wonder why do I even bother to go when I know the routine I am going to hear. I hope that you cheer and remember that you are not alone in this fight. Martha In iga-nephropathy , " yipee_ladybug " <yipee_ladybug@y...> wrote: > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I don't know why our bodies does what it does i have long given up trying to figure it out. But I do know that it is hard to stay postive, when you get no hope from the doctor. Some days I wonder why do I even bother to go when I know the routine I am going to hear. I hope that you cheer and remember that you are not alone in this fight. Martha In iga-nephropathy , " yipee_ladybug " <yipee_ladybug@y...> wrote: > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I don't know why our bodies does what it does i have long given up trying to figure it out. But I do know that it is hard to stay postive, when you get no hope from the doctor. Some days I wonder why do I even bother to go when I know the routine I am going to hear. I hope that you cheer and remember that you are not alone in this fight. Martha In iga-nephropathy , " yipee_ladybug " <yipee_ladybug@y...> wrote: > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 I'm so sorry to hear that you didn't get good news. How soon will you be able to determine if you are pregnant or not? That feeling of hopelessness is a hard one to shake. No there may be nothing we can do to completely stop our bodies from failing to function correctly BUT your wait may be years before you hit full failure....look at the amount of living you can do in that time. And even with full failure there is still a lot more living to do. Those who post here who are on dialysis or have gone thru the rigors of transplant have shown me that this is not a death sentence...just a new way of life. It takes some getting used to, yes, but as long as you are breathing life continues. Hang in there...and remember we are all here for you. Amy neph appt today > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. > > > > 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 February 20, 2004 Report Share Posted February 20, 2004 I'm so sorry to hear that you didn't get good news. How soon will you be able to determine if you are pregnant or not? That feeling of hopelessness is a hard one to shake. No there may be nothing we can do to completely stop our bodies from failing to function correctly BUT your wait may be years before you hit full failure....look at the amount of living you can do in that time. And even with full failure there is still a lot more living to do. Those who post here who are on dialysis or have gone thru the rigors of transplant have shown me that this is not a death sentence...just a new way of life. It takes some getting used to, yes, but as long as you are breathing life continues. Hang in there...and remember we are all here for you. Amy neph appt today > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. > > > > 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 February 21, 2004 Report Share Posted February 21, 2004 Hi Lorrie, Welcome to our group! If you have had IgAN at least 12 years with no decrease in kidney function, you stand an excellent chance of being in the majority that never do progress to ESRD. It is shocking at first when we hear about a chronic illness, but I count my blessings that if we have to have something chronic, I can think of many worse conditions I could have been afflicted with, and I feel like that even though I am one who will unfortunately end up on in ESRD. Welcome again to our group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Hi Lorrie, Welcome to our group! If you have had IgAN at least 12 years with no decrease in kidney function, you stand an excellent chance of being in the majority that never do progress to ESRD. It is shocking at first when we hear about a chronic illness, but I count my blessings that if we have to have something chronic, I can think of many worse conditions I could have been afflicted with, and I feel like that even though I am one who will unfortunately end up on in ESRD. Welcome again to our group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Hi Lorrie, Welcome to our group! If you have had IgAN at least 12 years with no decrease in kidney function, you stand an excellent chance of being in the majority that never do progress to ESRD. It is shocking at first when we hear about a chronic illness, but I count my blessings that if we have to have something chronic, I can think of many worse conditions I could have been afflicted with, and I feel like that even though I am one who will unfortunately end up on in ESRD. Welcome again to our group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 I can totally understand what you are going through. I dread every appoitment that I have, for the fear that I am going to hear something else negative about my condition. I was diagnosed at a very young age and have been fortunate to not have a lot of problems. I was 20 years old and could not understand how I could have something that there was no cure for. I can remember crying for days. I am 32 now and have not had any decrease in kidney function. There is always hope and medical technology is better then ever. Try to stay positive! Lorrie > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 I can totally understand what you are going through. I dread every appoitment that I have, for the fear that I am going to hear something else negative about my condition. I was diagnosed at a very young age and have been fortunate to not have a lot of problems. I was 20 years old and could not understand how I could have something that there was no cure for. I can remember crying for days. I am 32 now and have not had any decrease in kidney function. There is always hope and medical technology is better then ever. Try to stay positive! Lorrie > I had an appt with my neph today....my creatinine level has > increased again to 290. He's talking about putting me on high dose > Prednisone....if I'm not pregnant. > > As with every neph appt, I'm always numb and in shock from the > news. And angry and frustrated and discouraged and unhappy. Why > does it take 10 years to for my kidney function to drop 30% but only > 2 years to drop 40% more? And is there anything in my lifestyle > that I could change to improve it? My neph shakes his head. > Nothing. There's nothing I can do but wait for kidney failure it > seems. I feel hopeless. > > I'm trying to think positive thoughts right now, but it's not really > happening. Anyways, I hope this vent will make me feel better. > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Hi , I too count my blessings that it is not something worse. I had a friend recently loose his father to kidney failure and I thank god every day that what I have is not worse. I appreciate you taking the time to e-mail me with your thoughts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Amy, I am so sorry your friend is going through a battle with cancer. One of my best friends is currently going through her second battle with breast cancer that came back. Believe me, that makes me very grateful to have IgAN, even though for me ESRD is a certainty now, not a maybe. Puts things into perspective. Interestingly, when I had my biopsy, when the results were given to me the doctor said " Well, the good news is that it is not cancer. " I was shocked because cancer never even entered my mind. I have always been grateful that I didn't know they were looking at that as a possibility until after I found out it wasn't cancer. I do hope your friend is doing OK with her treatment. In a message dated 2/22/2004 12:47:32 PM Pacific Standard Time, purr-fect@... writes: > you are so right. My husband has a friend who's wife was diagnosed > with kidney problems about the same time I was...unfortunately after much > testing hers was determined to be cancer. When both she and I were having > our diagnostic testing done we kept saying " well it least it's not > cancer... " then when her tests came back positive for cancer we were > devastated. I do count myself lucky to " only " have IgAN....even with my > high chance of going to ESRD. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Amy, I am so sorry your friend is going through a battle with cancer. One of my best friends is currently going through her second battle with breast cancer that came back. Believe me, that makes me very grateful to have IgAN, even though for me ESRD is a certainty now, not a maybe. Puts things into perspective. Interestingly, when I had my biopsy, when the results were given to me the doctor said " Well, the good news is that it is not cancer. " I was shocked because cancer never even entered my mind. I have always been grateful that I didn't know they were looking at that as a possibility until after I found out it wasn't cancer. I do hope your friend is doing OK with her treatment. In a message dated 2/22/2004 12:47:32 PM Pacific Standard Time, purr-fect@... writes: > you are so right. My husband has a friend who's wife was diagnosed > with kidney problems about the same time I was...unfortunately after much > testing hers was determined to be cancer. When both she and I were having > our diagnostic testing done we kept saying " well it least it's not > cancer... " then when her tests came back positive for cancer we were > devastated. I do count myself lucky to " only " have IgAN....even with my > high chance of going to ESRD. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Amy, I am so sorry your friend is going through a battle with cancer. One of my best friends is currently going through her second battle with breast cancer that came back. Believe me, that makes me very grateful to have IgAN, even though for me ESRD is a certainty now, not a maybe. Puts things into perspective. Interestingly, when I had my biopsy, when the results were given to me the doctor said " Well, the good news is that it is not cancer. " I was shocked because cancer never even entered my mind. I have always been grateful that I didn't know they were looking at that as a possibility until after I found out it wasn't cancer. I do hope your friend is doing OK with her treatment. In a message dated 2/22/2004 12:47:32 PM Pacific Standard Time, purr-fect@... writes: > you are so right. My husband has a friend who's wife was diagnosed > with kidney problems about the same time I was...unfortunately after much > testing hers was determined to be cancer. When both she and I were having > our diagnostic testing done we kept saying " well it least it's not > cancer... " then when her tests came back positive for cancer we were > devastated. I do count myself lucky to " only " have IgAN....even with my > high chance of going to ESRD. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Amy, I had a similar experience that helped put things in perspective in a major way a long time ago. I started having blood in the urine around 1978, but I really only started noticing some effects from it (high blood pressure, more proteinuria) sometime in 1990 or so. In the summer of 1991, I replaced another officer who was a good friend of mine during a big army field exercise, because he had been taken with what everyone thought was a flu or something. I was commanding the advance party that had been in the training area for a week already, and when the rest of the battalion showed up, he wasn't with it because he had been hospitalised a few days before. So I took over the job he was going to have during the exercise. Anyway, after the exercise, we found out he had kidney cancer. He died 2 years later, during the period when my nephrologist had ordered a kidney biopsy and I was waiting for the date to have it. I had to wait a couple of months, and once it was done, I had to wait another 6 weeks for the results to come back. When they confirmed it was " only " IgA nephropathy, it was actually a relief. I remember well thinking while I was waiting for the biopsy and then the results that I hoped it wasn't kidney cancer. Pierre Re: Re: neph appt today > It is shocking at first when we hear about a > > chronic illness, but I count my blessings that if we have to have > something > > chronic, I can think of many worse conditions I could have been afflicted > with, > > and I feel like that even though I am one who will unfortunately end up on > in > > ESRD. > > > you are so right. My husband has a friend who's wife was diagnosed > with kidney problems about the same time I was...unfortunately after much > testing hers was determined to be cancer. When both she and I were having > our diagnostic testing done we kept saying " well it least it's not > cancer... " then when her tests came back positive for cancer we were > devastated. I do count myself lucky to " only " have IgAN....even with my > high chance of going to ESRD. > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thank you , it is a great comfort to remember this verse. I do have much to be thankful for. I am generally positive about life: stay active in physical activity and in my (dance) community. But to hear news like this gives you a real downer. Sophia > I am so disappointed you didn't get better news. I know how hard it is to > hope for good news and to be disappointed. Just know that we are here for you > to support and encourage you, and that you can vent anytime you need to. > > One of the verses I keep on my computer is Romans 12:12 which says " be joyful > in hope, patient in affliction, and faithful in prayer " That brings such > comfort to me, and I hope it might bring you some comfort right now too. > > > > In a message dated 2/19/2004 4:38:52 PM Pacific Standard Time, > yipee_ladybug@y... writes: > > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thank you , it is a great comfort to remember this verse. I do have much to be thankful for. I am generally positive about life: stay active in physical activity and in my (dance) community. But to hear news like this gives you a real downer. Sophia > I am so disappointed you didn't get better news. I know how hard it is to > hope for good news and to be disappointed. Just know that we are here for you > to support and encourage you, and that you can vent anytime you need to. > > One of the verses I keep on my computer is Romans 12:12 which says " be joyful > in hope, patient in affliction, and faithful in prayer " That brings such > comfort to me, and I hope it might bring you some comfort right now too. > > > > In a message dated 2/19/2004 4:38:52 PM Pacific Standard Time, > yipee_ladybug@y... writes: > > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thank you , it is a great comfort to remember this verse. I do have much to be thankful for. I am generally positive about life: stay active in physical activity and in my (dance) community. But to hear news like this gives you a real downer. Sophia > I am so disappointed you didn't get better news. I know how hard it is to > hope for good news and to be disappointed. Just know that we are here for you > to support and encourage you, and that you can vent anytime you need to. > > One of the verses I keep on my computer is Romans 12:12 which says " be joyful > in hope, patient in affliction, and faithful in prayer " That brings such > comfort to me, and I hope it might bring you some comfort right now too. > > > > In a message dated 2/19/2004 4:38:52 PM Pacific Standard Time, > yipee_ladybug@y... writes: > > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi , Yes, I totally agree with that. I've not been able to laugh the first couple of days after the neph appt on Thursday....however, I was volunteering at the dance competition in town, and shared a few jokes and banter as we always do amongst volunteers. And I do feel better, having put things in perspective. Thanks, Sophia > I'm sorry to hear about that but I guess there's one more thing you can do. > They said that laughter is the best medicine and even if it does not have > any good effect on IgAN, at least it does your heart a lot of good...and to > the baby too. That's what I do when I worry too much with my son's > condition. I pray, tell him I love him, then look for a good joke or watch > something funny. > > I hope you feel better. > > > > > >From: " yipee_ladybug " <yipee_ladybug@y...> > >Reply-To: iga-nephropathy > >To: iga-nephropathy > >Subject: neph appt today > >Date: Thu, 19 Feb 2004 23:47:10 -0000 > >MIME-Version: 1.0 > >X-Originating-IP: 24.71.223.143 > >X-Sender: yipee_ladybug@y... > >Received: from n35.grp.scd.yahoo.com ([66.218.66.103]) by > >mc3-f15.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Thu, 19 Feb 2004 > >15:47:25 -0800 > >Received: from [66.218.66.95] by n35.grp.scd.yahoo.com with NNFMP; 19 Feb > >2004 23:47:16 -0000 > >Received: (qmail 87581 invoked from network); 19 Feb 2004 23:47:12 -0000 > >Received: from unknown (66.218.66.166) by m7.grp.scd.yahoo.com with QMQP; > >19 Feb 2004 23:47:12 -0000 > >Received: from unknown (HELO n2.grp.scd.yahoo.com) (66.218.66.75) by > >mta5.grp.scd.yahoo.com with SMTP; 19 Feb 2004 23:47:12 -0000 > >Received: from [66.218.67.181] by n2.grp.scd.yahoo.com with NNFMP; 19 Feb > >2004 23:47:11 -0000 > >X-Message-Info: JGTYoYF78jEyQ8ZXZSfe99OCpY/Q15U3 > >X-eGroups-Return: > >sentto-2346229-24562-1077234434-cyncparas=hotmail.com@r... > >X-Apparently-To: iga-nephropathy > >Message-ID: <c13htu+a9fu@e...> > >User-Agent: eGroups-EW/0.82 > >X-Mailer: Yahoo Groups Message Poster > >X-eGroups-Remote-IP: 66.218.66.75 > >X-Yahoo-Profile: yipee_ladybug > >Mailing-List: list iga-nephropathy ; contact > >iga-nephropathy-owner > >Delivered-To: mailing list iga-nephropathy > >Precedence: bulk > >List-Unsubscribe: <mailto:iga-nephropathy- unsubscribe > > >Return-Path: > >sentto-2346229-24562-1077234434-cyncparas=hotmail.com@r... > >X-OriginalArrivalTime: 19 Feb 2004 23:47:25.0077 (UTC) > >FILETIME=[b9A16450:01C3F742] > > > >I had an appt with my neph today....my creatinine level has > >increased again to 290. He's talking about putting me on high dose > >Prednisone....if I'm not pregnant. > > > >As with every neph appt, I'm always numb and in shock from the > >news. And angry and frustrated and discouraged and unhappy. Why > >does it take 10 years to for my kidney function to drop 30% but only > >2 years to drop 40% more? And is there anything in my lifestyle > >that I could change to improve it? My neph shakes his head. > >Nothing. There's nothing I can do but wait for kidney failure it > >seems. I feel hopeless. > > > >I'm trying to think positive thoughts right now, but it's not really > >happening. Anyways, I hope this vent will make me feel better. > >Thanks for listening. > > > > _________________________________________________________________ > Stay informed on Election 2004 and the race to Super Tuesday. > http://special.msn.com/msn/election2004.armx Quote Link to comment Share on other sites More sharing options...
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