Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 I say do whatever helps you stay on program. If that means saving points for evening eating/snacking, then so be it. As long as its reasonable, there is nothing wrong with tailoring your daily points to fit your schedule/preferences. I also enjoy nighttime snacking. I usually have 2-3 points for breakfast, 6-8 points for lunch, 2 points for afternoon snack, and the rest of mine at night, eating all my activity points. My fav is a skinny cow sundae: I put a skinny cow in a bowl, top it with a couple of tablespoons of FF cool whip and a teaspoon of chocolate sprinkes for a delicious 3 point dessert I can eat with a spoon. April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 I've known some folks who have done that. Most people snack at night and have bigger dinners, so it makes it easier for them. Gymmie in Cali The difference between fit and fat is " I " What you eat between Thanksgiving and Christmas isn't as important as what you eat between Christmas and Thanksgiving God loves us in good times and in bad times. But He is even more real in our lives when we are having tough times. Coach Joe Gibbs -- Re: Hi All My WW leader said that we can start counting our daily points starting in the evening if we feel like we're more of a night-eater. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 > > My WW leader said that we can start counting our daily points starting > in the evening if we feel like we're more of a night-eater. Like start > your " day " at 4 pm and end at 3:59pm the next day. Apparently this way > of counting points is ok with WW 'cause she wouldn't suggest it if > wasn't. That might eliminate your guilt over eating late, which there > is nothing wrong w/ anyways. I agree. Our ww leader says what matters is how many points you consume in a 24 hour period. The time of day that 24 hour period starts is up to the individual. Terri in WI > > > > > >> > >> I really do not know if this is good, but I have been eating lighter > >> during the day so that I have points to munch during the night we I > >> seem to crave food more. I hope to get away from this one day but > >> for now that is what is helping me to stick to the program. > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 TY! It seems harder to lose the weight after you have a baby. > Woohooo!! Congratulations ! > Maureen > > Hi all > > > Sorry, I have been MIA. I was doing this at home and it wasn't > working and now I'm attending meetings. I lost 15 pounds in 7 weeks! > Only one more to 10% and 15 more to goal! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 LOL!! Tell me about it! I have had three....13 years, 12 years, and 5 years. I am still working to get all the weight off, of course I didn't start really losing until last year. Maureen Hi all > > > Sorry, I have been MIA. I was doing this at home and it wasn't > working and now I'm attending meetings. I lost 15 pounds in 7 weeks! > Only one more to 10% and 15 more to goal! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 Way to go, ! Glad that you've found something that's working for you! in OKC <>< 238/181.8/165 > Sorry, I have been MIA. I was doing this at home and it wasn't > working and now I'm attending meetings. I lost 15 pounds in 7 weeks! > Only one more to 10% and 15 more to goal! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 LOL. I still tell people that I have baby fat to lose, but they all laugh when they realize that he is 11 years old. I don't think that I can use that excuse forever, so I will stay OP. Rhonda LOL!! Tell me about it! I have had three....13 years, 12 years, and 5 years. I am still working to get all the weight off, of course I didn't start really losing until last year. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Hi Chelle, Welcome to the group, I'm glad you found us! Actually the people on prednisone are just more outspoken it seems...LOL...me for one. Not many of us are on it and it's normally reserved for those with high protein spills (over 3000mg/24hrs), and even then it's only used on a case by case basis. It's not a drug to be taken lightly. I'm also on fish oil (I do 6 caps daily) and there have been studies that show it can help. Check out a good amount of info regarding fish oil on our sister site at www.igan.ca Here's the direct link to the fish oil article http://www.igan.ca/id67.htm It's one of those things that can't hurt and might help so some nephs feel it's worth a shot. You also find some who think the research isn't conclusive enough and don't recommend it. I think the best thing you can do for yourself is what you have been doing. Keep up with your regular checkups and labwork, keep your blood pressure under control and follow any dietary recommendations made by your neph. Keeping your b/p under control is the ONE thing we can control. If left unchecked high blood pressure can cause kidney damage in and of itself, so good control of that is key to preserving kidney function in the long term. If you've had this disease for many years and are still getting " Things look good " comments from your neph then you are probably in the 50-70% of us who will never reach end stage. IgAN isn't a direct ticket to end stage renal failure, only 30-50% of us will end up there and many of that group will take 20 years or more to get there. Welcome again to the group and have a very Happy Thanksgiving! Amy G. Hi All Hello, I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. Happy Thanks Giving, Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 Hi Chelle, Welcome to the group, I'm glad you found us! Actually the people on prednisone are just more outspoken it seems...LOL...me for one. Not many of us are on it and it's normally reserved for those with high protein spills (over 3000mg/24hrs), and even then it's only used on a case by case basis. It's not a drug to be taken lightly. I'm also on fish oil (I do 6 caps daily) and there have been studies that show it can help. Check out a good amount of info regarding fish oil on our sister site at www.igan.ca Here's the direct link to the fish oil article http://www.igan.ca/id67.htm It's one of those things that can't hurt and might help so some nephs feel it's worth a shot. You also find some who think the research isn't conclusive enough and don't recommend it. I think the best thing you can do for yourself is what you have been doing. Keep up with your regular checkups and labwork, keep your blood pressure under control and follow any dietary recommendations made by your neph. Keeping your b/p under control is the ONE thing we can control. If left unchecked high blood pressure can cause kidney damage in and of itself, so good control of that is key to preserving kidney function in the long term. If you've had this disease for many years and are still getting " Things look good " comments from your neph then you are probably in the 50-70% of us who will never reach end stage. IgAN isn't a direct ticket to end stage renal failure, only 30-50% of us will end up there and many of that group will take 20 years or more to get there. Welcome again to the group and have a very Happy Thanksgiving! Amy G. Hi All Hello, I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. Happy Thanks Giving, Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2004 Report Share Posted November 25, 2004 Chelle, I just wanted to say welcome to the group! ~Dana Hi All Hello, I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. Happy Thanks Giving, Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2004 Report Share Posted November 25, 2004 Hi Welcome to the group. I didn't pay much personal attention to my IgAN for well over a decade. I only became more interested after my biopsy in 1993. When it's the usual slowly-progressive kind of IgAN as it is for the majority of people, I don't think it makes much difference, until you start getting under 50% kidney function territory. Fish oil has been relatively common for IgAN patients (though certainly not all of them) since the first study published by Dr. Donadio in 1994 or so. I've written about it on www.igan.ca , as another member already mentioned. It might or might not help in the long run, but it does not seem to be harmful, so far anyway. Keep in mind I'm talking in the context of IgAN. There are other kidney diseases where being on prednisone is a fact of life. Prednisone is a powerful, heavy-hitter of a drug. The common wisdom has been that the benefits don't outweigh the risks unless proteinuria is more than mild (<1000mg/day), maybe more than moderate (>1000mg/day), and approaching or into nephrotic range (3500mg/day). So, some people are on prednisone and others are not. Moreover, nephrologists differ on when it becomes sensible to use prednisone. Some recent studies seem to point to some benefit in mild IgAN. But, I find these things come and go in cycles. Personally, I think that, unless there's nephrotic range proteinuria, the significant problems that prednisone causes may not be worth it. You can't be on it permanently, and as soon as it's discontinued, the proteinuria may start coming back. So, you could easily spend a good part of your life dealing with the problems of prednisone in that kind of scenario, on one course of prednisone after another. I personally think it's most useful to beat down an episode of nephrotic range proteinuria. On the other hand, I wouldn't argue the point if someone does want to be on it and has a nephrologist who is more aggressive about its use. There is evidence for and against, kind of like there is for fish oil.. Sometimes, I find it odd to see how easily prednisone is doled out for kidney disease by some nephrologists for what are often marginal or uncertain benefits, and yet it's so drastically limited for people who have diseases like asthma for which oral prednisone can make dramatic, obvious improvements. I'm on dialysis now, since 2002, but it took at least 25 years to get there from the first time blood was discovered in a urine sample. During that time, I NEVER had heavy proteinuria, in fact, I never really had proteinuria much higher than 1000mg/day. Yet, I still ended up on dialysis. Would I if I had been on prednisone? Who knows. Maybe it would have bought me a few extra years, I don't know. But I do know that I led a pretty normal life with virtually no symptoms except high blood pressure during those 25 years. I'm not sure I could say the same if I had been on prednisone during that time. I actually was on prednisone for a week at a time a couple of times during the 1990's, but it had nothing to do with my kidneys, and it wasn't exactly a pleasant experience. The only treatment I ever had was blood pressure medication. Now, there's two ways to look at it. I had a great 25 years until I needed dialysis, or I could have gone on even longer with some more aggressive treatment (maybe, maybe not). This is something I will never know. Nobody will ever know, because none of the " treatments " being used for IgAN have absolute, clear-cut benefits in the long run, as far as is currently known. It's my impression that some nephs are more aggressive these days though. Good luck in finding a new neph. Pierre Hi All > > > Hello, > > I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. > > I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. > > I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. > > Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. > > I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. > > As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. > > Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. > > Happy Thanks Giving, > > Chelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2004 Report Share Posted November 25, 2004 > Hi Chelle, Glad you found this site. There are a lot of articles on how fish oil can prevent kidney function from declining in studies, I would definately stick with it and probably just as important is keeping your BP controlled. I was unfortunate in that when I was diagnosed I was at 20 % function already. christine > Hello, > > I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. > > I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. > > I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. > > Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. > > I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. > > As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. > > Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. > > Happy Thanks Giving, > > Chelle > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2004 Report Share Posted November 26, 2004 Hi Amy, Thanks so much for the fish oil article! That was really helpful to my understanding of what it does. It's interesting how varied the results are on its effectiveness. For some reason, despite some skepticism out there, fish oil was the first thing my doctor recommended to me. I guess he had good experiences with it... perhaps. I'm curious now. Anyway, I have really had good luck with it. Don't know how it happened to work for me, but I'm glad that it has. I also like it because it has no side-effects for me. It's supposed to have other health benefits too, but I haven't noticed anything specifically. Amy, if you are already taking some fish oil, do you suppose you might ask your neph about increasing your amount? I don't know if it would help since you have such high protein, but I do recommend it. I've noticed that my dose is twice what yours is, so perhaps the increase could be beneficial. Although, I'm not sure exactly what my total amount is. I just know iI take six capsules at night and six in the morning. I know there are different amounts per different types of capsules, so I'll check on the exact amount for you. Regardless, maybe more is better, maybe not. It's just my random suggestion given my own experience. I do wonder about this line from the article however. It was the thing that had me most concerned. " ...At present, the most recent thinking is that while fish oil may slow progression of the disease at first, it may not do anything in the longer term... " This makes me worry that, even though I'm controlled right now, I may not always be. Nevertheless, I suppose it's not something to worry about just yet, maybe just something to talk about with my new doc? Anyway, thanks again for the article. Also, thanks for your warm welcome. Everyone's been really great on here! Chelle Hi All Hello, I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. Happy Thanks Giving, Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2004 Report Share Posted November 26, 2004 Hi Pierre, Wow, a lot of info there! I've heard, from you and from many others, that Prednisone is pretty rough to be on, so I'm glad that it wasn't my doc's first choice. Now, you said you weren't and anything but bp meds for many years. How did that happen? I mean, did you try other treatments and they not work, or were you just naturally mild for a long time IGA-wise? I know that my doc at first told me that I likely had a mild form and wouldn't need any treatment at all. This was great news to my family and I at first, but didn't last. Some time after, my doc tested me another time or two and then changed his mind. He said it was likely a more aggressive form. He had me do a kidney biopsy in order to determine for sure. BTW, a kidney biopsy at 13 seemed like a really big traumatic deal. *smile*. Anyway, the point of that story was, is it typical to have different levels of IGA? Are there different types or just different symptoms higher or lower in severity? I'm curious because I noticed that my doc only gave me a bp med and the fish oil after the biopsy. What was it that would have made him decide? Sorry if this sounds a little clueless, but I am curious. Thanks for listening to my questions all. Also thanks to Rita and Donna and the others who wrote me nice welcome messages as well. Thanks guys! Chelle Hi All > > > Hello, > > I'm and I'm new to the list. I've been reading the list for a few days now and am already impressed with how much information and support is shared. > > I'm a junior in college and have had IGA since I was 13. I was so excited to find this list and discover how many others there are with this condition. I am the only one I've known all this time since I've been diagnosed. > > I mainly joined since I've moved to a new city and state where I have to be on a search for a new nephrologist. I've had the one doctor all along for about nine years now. He was great, but now that I have to look for someone new, I'm realizing how little I know about my kidneys or about IGA. I was just a kid when I was diagnosed and I mainly just let my parents and my doctor figure things out. I implicitly trusted everyone and let them worry about IGA and what it meant. I've really been lucky all this time so I figure whatever they had decided was just fine. Even since going to college and moving out, I spent years where I just did my thing and had my exam at the doc every four months or so and never thought twice about anything. > > Now that I'm reading this list and seeing how well-informed everyone here is, I'm be beginning to realize how little I know and how incredibly lucky I've been health-wise considering. I do the 24 hour urine thing about every six months. Even so, I sheepishly admit that I have absolutely no idea what my protein, creatanine, or kidney function levels are. I always get the results, but don't pay attention, if the doc says they are fine... then they are fine by me. I'm planning to study my last batch (from May) once I get all the boxes unpacked from my move however. I believe my creatanine and function were really good, but I have more protein than I should. My doc has always seemed fine with this, but should I be? That's why I'm seeking you guys... I want to be informed and learn what I can from the experience of others. > > I have taken Omega 3 fish oil for about eight years. I take twelve capsules per day and they seem to do the trick. This seems like a real non-solution, but my doc recommended it and it seems to work. I also take one pill for high blood pressure. It's called Avapro, and as long as I stay on it my bp is really good. Has anyone on here had any experience with taking fish oil for their IGA? Everyone seems to be taking Prednisone or something similar, and so I was curious if the fish oil thing is uncommon or something. > > As I look for a new kidney doc, I wonder what I should know and what I should be looking for. I also worry that, even though what I'm doing currently seems to work and my kidnes seem to be doing well, is there something else I should be doing? I don't want to be on dyalasus in ten years or so, and so I really want to be more informed. > > Okay guys, sorry this intro is really long. I look forward to talking with all of you and getting to know everyone better. > > Happy Thanks Giving, > > Chelle > 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 November 28, 2004 Report Share Posted November 28, 2004 Hi Chelle, There is the most common type of IgAN, which is fairly benign and as Amy has shared with you 50-70% never reach end stage with this type. There is also a more aggressive IgAN, and if you have been followed this long and have fairly stable labs, you do not have this type. Other than that, we are just in different stages of progression, or have differing levels of protein spill which is usually what triggers the Prednisone treatment as Pierre explained so well in his email. Hope this helps. > > Hi Pierre, > > Wow, a lot of info there! > > I've heard, from you and from many others, that Prednisone is pretty rough to be on, so I'm glad that it wasn't my doc's first choice. Now, you said you weren't and anything but bp meds for many years. How did that happen? I mean, did you try other treatments and they not work, or were you just naturally mild for a long time IGA-wise? I know that my doc at first told me that I likely had a mild form and wouldn't need any treatment at all. This was great news to my family and I at first, but didn't last. Some time after, my doc tested me another time or two and then changed his mind. He said it was likely a more aggressive form. He had me do a kidney biopsy in order to determine for sure. BTW, a kidney biopsy at 13 seemed like a really big traumatic deal. *smile*. > > Anyway, the point of that story was, is it typical to have different levels of IGA? Are there different types or just different symptoms higher or lower in severity? I'm curious because I noticed that my doc only gave me a bp med and the fish oil after the biopsy. What was it that would have made him decide? Sorry if this sounds a little clueless, but I am curious. > > Thanks for listening to my questions all. Also thanks to Rita and Donna and the others who wrote me nice welcome messages as well. Thanks guys! > > Chelle > > > Hi All > > > > > > > > Hello, > > > > I'm and I'm new to the list. I've been reading the list for a > few days now and am already impressed with how much information and support > is shared. > > > > I'm a junior in college and have had IGA since I was 13. I was so excited > to find this list and discover how many others there are with this > condition. I am the only one I've known all this time since I've been > diagnosed. > > > > I mainly joined since I've moved to a new city and state where I have to > be on a search for a new nephrologist. I've had the one doctor all along > for about nine years now. He was great, but now that I have to look for > someone new, I'm realizing how little I know about my kidneys or about IGA. > I was just a kid when I was diagnosed and I mainly just let my parents and > my doctor figure things out. I implicitly trusted everyone and let them > worry about IGA and what it meant. I've really been lucky all this time so > I figure whatever they had decided was just fine. Even since going to > college and moving out, I spent years where I just did my thing and had my > exam at the doc every four months or so and never thought twice about > anything. > > > > Now that I'm reading this list and seeing how well-informed everyone here > is, I'm be beginning to realize how little I know and how incredibly lucky > I've been health-wise considering. I do the 24 hour urine thing about every > six months. Even so, I sheepishly admit that I have absolutely no idea what > my protein, creatanine, or kidney function levels are. I always get the > results, but don't pay attention, if the doc says they are fine... then they > are fine by me. I'm planning to study my last batch (from May) once I get > all the boxes unpacked from my move however. I believe my creatanine and > function were really good, but I have more protein than I should. My doc > has always seemed fine with this, but should I be? That's why I'm seeking > you guys... I want to be informed and learn what I can from the experience > of others. > > > > I have taken Omega 3 fish oil for about eight years. I take twelve > capsules per day and they seem to do the trick. This seems like a real > non-solution, but my doc recommended it and it seems to work. I also take > one pill for high blood pressure. It's called Avapro, and as long as I stay > on it my bp is really good. Has anyone on here had any experience with > taking fish oil for their IGA? Everyone seems to be taking Prednisone or > something similar, and so I was curious if the fish oil thing is uncommon or > something. > > > > As I look for a new kidney doc, I wonder what I should know and what I > should be looking for. I also worry that, even though what I'm doing > currently seems to work and my kidnes seem to be doing well, is there > something else I should be doing? I don't want to be on dyalasus in ten > years or so, and so I really want to be more informed. > > > > Okay guys, sorry this intro is really long. I look forward to talking > with all of you and getting to know everyone better. > > > > Happy Thanks Giving, > > > > Chelle > > > > > > > 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 1, 2005 Report Share Posted February 1, 2005 No, we go to Childrens Hospital of Detroit > Lori: > I am so sorry to hear that 's labs aren't looking good. If I were > you, I sure would call and tell them that you are feeling confused and > concerned, and you would appreciate a call from your neph. You need to > have a decent explanation of what is going on. > I hate to admit this, but I've forgotten, do you go to Cincy Children's?? > , mom to Rob, 15 > > On Tue, 01 Feb 2005 02:56:43 -0000 " littlell523 " <littlell523@y...> > writes: > > Hi everyone, Haven't been able to visit much this past couple of > weeks, we have been really busy. How is everyone doing? Here I > thought we were doing great and then went to the neph last > Thursday. Well, this was the first time that we had seen this > doctor, bedside manner he doesn't have. is now down to 50mg > of pred for a month and then 40mg the next month, after telling me > this he then said " We don't know if she is getting better, her levels > are all higher than when she left the hospital, so I need to run > more tests on her " . Her BP has been really good, but then the doctor > says " you will hear from us in about 4-5 days and we will probably > being putting her on a BP medicine for the protien spills, so you > will really have to start watching her BP closer " . And then he left, > no thank you, no, let me explain, nothing. What the heck!! Am I > missing something here. So, once again I feel like I'm on the > roller coaster, just when things were sort of getting on an even > level. What do you guys think?? Should I call and talk with her > other doctor that we have known since she went into the hospital? > > > Lori > Mother of 12 year old > > > > > > 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 June 2, 2005 Report Share Posted June 2, 2005 Thanks Donna.. How are you doing? Jodee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Thanks Donna.. How are you doing? Jodee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Donna, Good to hear from you, let us know how w/i goes... Gail Donna wrote: Hi, guys! Thought I'd try to do a quick post. I'm reading everything, it just seems like as soon as I start to post, I have to get up and go do something else. Barb...let us know what you find out with your MRI...hope it turns out to be something easily fixed. Jodee...congrats on the job, that has to be a load off your mind! Gail...I've been off plan for a couple of weeks now...thought I'd get back on this week, but haven't. Friday is WI, so maybe I can get motivated again by then. Coco...I could sure use some of your exercising motivation...whew...I get tired just thinking about it! Jon...where are you????????? Everybody else....sorry I left out anyone...my alzheimers is kicking in again! love you all, D. Donna Don't argue with an idiot; people watching may not be able to tell the difference. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Betsy, I am so sorry for your loss....my prayers are with you and your family...if you need someone to talk to, reach me on yahoo under dawnabelle75 on yahoo. I m her for amything you need hun...we all need to stick together and support each other thru asll the hard times as well as the good...thats what frioends are for! huggs and prayers, Dawn Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Betsy, I am so sorry for your loss....my prayers are with you and your family...if you need someone to talk to, reach me on yahoo under dawnabelle75 on yahoo. I m her for amything you need hun...we all need to stick together and support each other thru asll the hard times as well as the good...thats what frioends are for! huggs and prayers, Dawn Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Betsy, I am so sorry for your loss....my prayers are with you and your family...if you need someone to talk to, reach me on yahoo under dawnabelle75 on yahoo. I m her for amything you need hun...we all need to stick together and support each other thru asll the hard times as well as the good...thats what frioends are for! huggs and prayers, Dawn Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
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