Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Welcome to the group Kristi. You've already gotten some great replies, so I won't repeat anything. I wrote the igan.ca website, so I hope it's not TOO informative Without seeing any numbers, your igan is probably very mild at present, and your nephrologist probably sees no reason to talk about some of the more dire consequences that might happens sometime in the distant future. If you had rapidly-progressive igan, it would be a different matter. Why worry someone for something that might never happen? I only started dialysis in 2002. The first appearance of IgAN symptoms was in 1977 or 78. In retrospect, I'm glad I spent most of the period in between not worrying about it. Personally, I think a recommendation for iffy surgery like a tonsillectomy, without an obvious need for it, should perhaps be the subject of a second opinion. We have both the IgAN Cafe and this email group, primarily because in the beginning, I didn't want to be completely dependent on Yahoo Groups. Both are active, and some people prefer one or the other. Some people like the email group format, and some prefer the web-based message board format. Most people only actively post on one. In the Cafe, you can more easily read all the back messages - and there is a ton of useful information buried in those, so it's useful to read even if you only participate in the email group. The email group has a lot more actual registered subscribers though, and more collective experience. The Cafe doesn't send you email, but the email group, if set for email, generates a lot of email in your inbox at times, and, once a message has been sent, it can't be edited. In the Cafe, I easily maintain it so that subject lines are kept relevant to the content of the message, etc., and I can move messages around into the appropriate forum. The Cafe also keeps all members email addresses completely private. With an email group, the very nature of it makes email addresses visible to others who receive the messages. Most people who participate in email groups don't consider that to be a problem. So, it's up to you. Whatever you prefer. Pierre hello all > Recently joined, thought I should introduce myself. > > I go for a biopsy Wednesday to confirm IgA Nephropathy. Found the igan.ca site after my last visit with the doc, and it has definitely been informative. Maybe too informative?! I think I have Pollyanna for a nephrologist. When he told me I probably had IgA, all he said was that it was the best possible diagnosis and I would live 'til I was 90 without any problems. 'Course when I got home I just had to go see what I could find on the Internet . And so far I've learned that it seems to be more of a case of there's no way to predict what will happen. > > Anyway, I do want to thank everyone in advance for the answers to all the questions I'm sure I'll have if this comes back positive. > > For my first question . . . The website has the following information: > > " Since there is no real evidence that having a tonsillectomy improves the long-term outcome of IgAN, and it is not considered an effective treatment, very few nephrologists will agree with patient requests to recommend one. " > > I'm a bit confused, because the one thing that my nephrologist did say is that if this comes back positive the first thing that he wants to do is take out my tonsils. I don't really have strong feelings on it one way or another. I do have chronic sore throats, but ever since my thyroid meds seem to have straightened out my immune system I rarely get seriously ill. Would a second opinion re: the tonsils be recommended? > > Also, with the email group vs. the cafe . . . (having done neither before) .. . . do people normally belong to both and post in both, or just one? > > Thanks again - > Kristi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Welcome to the group Kristi. You've already gotten some great replies, so I won't repeat anything. I wrote the igan.ca website, so I hope it's not TOO informative Without seeing any numbers, your igan is probably very mild at present, and your nephrologist probably sees no reason to talk about some of the more dire consequences that might happens sometime in the distant future. If you had rapidly-progressive igan, it would be a different matter. Why worry someone for something that might never happen? I only started dialysis in 2002. The first appearance of IgAN symptoms was in 1977 or 78. In retrospect, I'm glad I spent most of the period in between not worrying about it. Personally, I think a recommendation for iffy surgery like a tonsillectomy, without an obvious need for it, should perhaps be the subject of a second opinion. We have both the IgAN Cafe and this email group, primarily because in the beginning, I didn't want to be completely dependent on Yahoo Groups. Both are active, and some people prefer one or the other. Some people like the email group format, and some prefer the web-based message board format. Most people only actively post on one. In the Cafe, you can more easily read all the back messages - and there is a ton of useful information buried in those, so it's useful to read even if you only participate in the email group. The email group has a lot more actual registered subscribers though, and more collective experience. The Cafe doesn't send you email, but the email group, if set for email, generates a lot of email in your inbox at times, and, once a message has been sent, it can't be edited. In the Cafe, I easily maintain it so that subject lines are kept relevant to the content of the message, etc., and I can move messages around into the appropriate forum. The Cafe also keeps all members email addresses completely private. With an email group, the very nature of it makes email addresses visible to others who receive the messages. Most people who participate in email groups don't consider that to be a problem. So, it's up to you. Whatever you prefer. Pierre hello all > Recently joined, thought I should introduce myself. > > I go for a biopsy Wednesday to confirm IgA Nephropathy. Found the igan.ca site after my last visit with the doc, and it has definitely been informative. Maybe too informative?! I think I have Pollyanna for a nephrologist. When he told me I probably had IgA, all he said was that it was the best possible diagnosis and I would live 'til I was 90 without any problems. 'Course when I got home I just had to go see what I could find on the Internet . And so far I've learned that it seems to be more of a case of there's no way to predict what will happen. > > Anyway, I do want to thank everyone in advance for the answers to all the questions I'm sure I'll have if this comes back positive. > > For my first question . . . The website has the following information: > > " Since there is no real evidence that having a tonsillectomy improves the long-term outcome of IgAN, and it is not considered an effective treatment, very few nephrologists will agree with patient requests to recommend one. " > > I'm a bit confused, because the one thing that my nephrologist did say is that if this comes back positive the first thing that he wants to do is take out my tonsils. I don't really have strong feelings on it one way or another. I do have chronic sore throats, but ever since my thyroid meds seem to have straightened out my immune system I rarely get seriously ill. Would a second opinion re: the tonsils be recommended? > > Also, with the email group vs. the cafe . . . (having done neither before) .. . . do people normally belong to both and post in both, or just one? > > Thanks again - > Kristi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Hi Kristi, Fatigue is a common complaint among those of us diagnosed with IgAN. That underlying fatigue can worsen though if and when anemia sets in. I know I had fatigue for a good 5-7 years or so before I became anemic, at which point I was so fatigued I had to cut back to half time work for a while. Once corrected with Procrit though, I was able to resume my normal schedule. Based on my experience, I can say the fatigue was not originally related to anemia, and at that point my renal function was pretty good, so I don't think it was related to that either. My guess is that it is just part of IgAN. It didn't really start in me until I was about 50% though, so there may be some connection to decrease in renal function, but I think it is mainly just due to IgAN itself in my opinion. I have to say that I am not a doctor though. I don't have any experience with hypothyroidism though, so I can't comment on how that would impact it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Hi Kristi, Fatigue is a common complaint among those of us diagnosed with IgAN. That underlying fatigue can worsen though if and when anemia sets in. I know I had fatigue for a good 5-7 years or so before I became anemic, at which point I was so fatigued I had to cut back to half time work for a while. Once corrected with Procrit though, I was able to resume my normal schedule. Based on my experience, I can say the fatigue was not originally related to anemia, and at that point my renal function was pretty good, so I don't think it was related to that either. My guess is that it is just part of IgAN. It didn't really start in me until I was about 50% though, so there may be some connection to decrease in renal function, but I think it is mainly just due to IgAN itself in my opinion. I have to say that I am not a doctor though. I don't have any experience with hypothyroidism though, so I can't comment on how that would impact it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Hi Kristi, Fatigue is a common complaint among those of us diagnosed with IgAN. That underlying fatigue can worsen though if and when anemia sets in. I know I had fatigue for a good 5-7 years or so before I became anemic, at which point I was so fatigued I had to cut back to half time work for a while. Once corrected with Procrit though, I was able to resume my normal schedule. Based on my experience, I can say the fatigue was not originally related to anemia, and at that point my renal function was pretty good, so I don't think it was related to that either. My guess is that it is just part of IgAN. It didn't really start in me until I was about 50% though, so there may be some connection to decrease in renal function, but I think it is mainly just due to IgAN itself in my opinion. I have to say that I am not a doctor though. I don't have any experience with hypothyroidism though, so I can't comment on how that would impact it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Welcome . good job on the 18 lbs. thatds great. I haven't really been sticking to dieting well lating so I reallycan't answer about the cravings, but I have heard they go away. Anita Hello All > I wanted to take the time to introduce myself and tell you how > excited I am to belong to a weight-loss support group. So here goes, > I live in San Diego and run a Family Childcare in my home. I also go > to school part time in the evenings. I'm married and have three > children and one grandchild. I started my diet the first week of June > 2004. As of today I've lost 18lbs. I gained most of my weight after I > had my last child, who is now 16! I don't feel hungry on the diet I'm > on, but I often have cravings for high fat, high sugar foods. I had > hoped that by this point these cravings would have gone away. Do they > ever go away? Or are these feelings something I'm going to have to > battle the rest of my life? > I am very much interested in sharing recipes, especially for dinner. > Right now I am looking for a low-cal Lasagna recipe that includes > meat. > > Stay well, > > > P.S. How do you get colored,fancy text? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Welcome . good job on the 18 lbs. thatds great. I haven't really been sticking to dieting well lating so I reallycan't answer about the cravings, but I have heard they go away. Anita Hello All > I wanted to take the time to introduce myself and tell you how > excited I am to belong to a weight-loss support group. So here goes, > I live in San Diego and run a Family Childcare in my home. I also go > to school part time in the evenings. I'm married and have three > children and one grandchild. I started my diet the first week of June > 2004. As of today I've lost 18lbs. I gained most of my weight after I > had my last child, who is now 16! I don't feel hungry on the diet I'm > on, but I often have cravings for high fat, high sugar foods. I had > hoped that by this point these cravings would have gone away. Do they > ever go away? Or are these feelings something I'm going to have to > battle the rest of my life? > I am very much interested in sharing recipes, especially for dinner. > Right now I am looking for a low-cal Lasagna recipe that includes > meat. > > Stay well, > > > P.S. How do you get colored,fancy text? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Welcome . good job on the 18 lbs. thatds great. I haven't really been sticking to dieting well lating so I reallycan't answer about the cravings, but I have heard they go away. Anita Hello All > I wanted to take the time to introduce myself and tell you how > excited I am to belong to a weight-loss support group. So here goes, > I live in San Diego and run a Family Childcare in my home. I also go > to school part time in the evenings. I'm married and have three > children and one grandchild. I started my diet the first week of June > 2004. As of today I've lost 18lbs. I gained most of my weight after I > had my last child, who is now 16! I don't feel hungry on the diet I'm > on, but I often have cravings for high fat, high sugar foods. I had > hoped that by this point these cravings would have gone away. Do they > ever go away? Or are these feelings something I'm going to have to > battle the rest of my life? > I am very much interested in sharing recipes, especially for dinner. > Right now I am looking for a low-cal Lasagna recipe that includes > meat. > > Stay well, > > > P.S. How do you get colored,fancy text? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 , Welcome to the family! Way to go on the 18 pounds you have lost so far. What plan are you following? I have heard that if you reduce your intake of refined sugars that the cravins will eventually go away or be very rare. To get the color text it is in the email I have. I just highlight it and then change the font and color. As for a recipe, you might check www.weightwatchers.com We also have a recipe group The Lighter SIde. Check the links section for the addy. www.dwlz.com has some recipes too. HTH! Look forward to getting to know you better. Post when you can. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 , Welcome to the family! Way to go on the 18 pounds you have lost so far. What plan are you following? I have heard that if you reduce your intake of refined sugars that the cravins will eventually go away or be very rare. To get the color text it is in the email I have. I just highlight it and then change the font and color. As for a recipe, you might check www.weightwatchers.com We also have a recipe group The Lighter SIde. Check the links section for the addy. www.dwlz.com has some recipes too. HTH! Look forward to getting to know you better. Post when you can. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 , Welcome to the family! Way to go on the 18 pounds you have lost so far. What plan are you following? I have heard that if you reduce your intake of refined sugars that the cravins will eventually go away or be very rare. To get the color text it is in the email I have. I just highlight it and then change the font and color. As for a recipe, you might check www.weightwatchers.com We also have a recipe group The Lighter SIde. Check the links section for the addy. www.dwlz.com has some recipes too. HTH! Look forward to getting to know you better. Post when you can. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 , Welcome to the family. And congrats on the 18 pounds thus far. That is awesome!I look forward to getting to know you.As far as the color changes, if you have outlook express, you can just click on the A and it will let you change colors.Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 , Welcome to the family. And congrats on the 18 pounds thus far. That is awesome!I look forward to getting to know you.As far as the color changes, if you have outlook express, you can just click on the A and it will let you change colors.Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Coco, I am kind of following Dr. Phil's plan. Basically you are supposed to eat protein with every meal, 2oz with breakfast, and 3-4 oz for lunch and dinner, 2 servings of non-fat or low- fat dairy, at least 4 servings of non-starchy vegetables, 2 fruit servings and limited added fat, 1 tablespoon daily. If you are a man you get 3 servings of starchy carbohydrate, a woman gets only 2. Your starchy carbohydrates are supposed to be high in fiber and made from whole grains. And of course you are not supposed to have any added sugar. Well I can't emotionally handle only having 2 starches a day so I usually have a starch with every meal. I try and make sure that most of those starches have plenty of fiber, (i.e. whole wheat tortilla, brown rice etc.) I also don't take a protein with my breakfast which is usually a high fiber cereal and non fat milk. I also have this thing for Yoplait non-fat lemon cream pie flavored yogurt. It is non fat, but it does have about 1 tablespoon of sugar per serving. I often don't eat both daily fruit servings, instead substituting non-fat chocolate pudding (I like jello brand devils food in the dairy case) or 4oz of reduced calorie frozen yogurt. Because I live in the land of perpetual thinness it is easy to find yogurt shops that have reduced calorie products. I want to make changes to my diet that will last me over the long haul. I am comfortable with the portions of this diet and make adjustments so that I won't feel deprived and do something silly like eat a quart of Ben and Jerry's. So far the weight (after the first week or so) has been coming off at around 1 to 1.5 lb's per week. I am active but have not started exercising again. I want to start walking next week and go back to strength training after my vacation. I do better with slow changes rather than trying to do everything all at once. The one great thing about getting older is you finally have figured out what will or what will not work for you. I try and make three of my meals contain seafood and I have two vegetarian meals a week. I limit my pork/beef consumption to 3-4 times a week. I weigh my portions to make sure that I don't fool myself. I eat a lot of chicken. This is probably much more information than you wanted, but couldn't figure out another way of explain what I do because I am not really following one particular plan. Stay healthy, Re: Hello All , Welcome to the family! Way to go on the 18 pounds you have lost so far. What plan are you following? I have heard that if you reduce your intake of refined sugars that the cravins will eventually go away or be very rare. To get the color text it is in the email I have. I just highlight it and then change the font and color. As for a recipe, you might check www.weightwatchers.com We also have a recipe group The Lighter SIde. Check the links section for the addy. www.dwlz.com has some recipes too. HTH! Look forward to getting to know you better. Post when you can. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Welcome to this amazing group, . If you find a way to get rid of the cravings, PLEASE let me know! :-) I know you will find this group to be very supportive - of the weight loss and non-weight loss issues. Hello All I wanted to take the time to introduce myself and tell you how excited I am to belong to a weight-loss support group. So here goes, I live in San Diego and run a Family Childcare in my home. I also go to school part time in the evenings. I'm married and have three children and one grandchild. I started my diet the first week of June 2004. As of today I've lost 18lbs. I gained most of my weight after I had my last child, who is now 16! I don't feel hungry on the diet I'm on, but I often have cravings for high fat, high sugar foods. I had hoped that by this point these cravings would have gone away. Do they ever go away? Or are these feelings something I'm going to have to battle the rest of my life?I am very much interested in sharing recipes, especially for dinner. Right now I am looking for a low-cal Lasagna recipe that includes meat.Stay well,P.S. How do you get colored,fancy text? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Welcome to this amazing group, . If you find a way to get rid of the cravings, PLEASE let me know! :-) I know you will find this group to be very supportive - of the weight loss and non-weight loss issues. Hello All I wanted to take the time to introduce myself and tell you how excited I am to belong to a weight-loss support group. So here goes, I live in San Diego and run a Family Childcare in my home. I also go to school part time in the evenings. I'm married and have three children and one grandchild. I started my diet the first week of June 2004. As of today I've lost 18lbs. I gained most of my weight after I had my last child, who is now 16! I don't feel hungry on the diet I'm on, but I often have cravings for high fat, high sugar foods. I had hoped that by this point these cravings would have gone away. Do they ever go away? Or are these feelings something I'm going to have to battle the rest of my life?I am very much interested in sharing recipes, especially for dinner. Right now I am looking for a low-cal Lasagna recipe that includes meat.Stay well,P.S. How do you get colored,fancy text? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Welcome to this amazing group, . If you find a way to get rid of the cravings, PLEASE let me know! :-) I know you will find this group to be very supportive - of the weight loss and non-weight loss issues. Hello All I wanted to take the time to introduce myself and tell you how excited I am to belong to a weight-loss support group. So here goes, I live in San Diego and run a Family Childcare in my home. I also go to school part time in the evenings. I'm married and have three children and one grandchild. I started my diet the first week of June 2004. As of today I've lost 18lbs. I gained most of my weight after I had my last child, who is now 16! I don't feel hungry on the diet I'm on, but I often have cravings for high fat, high sugar foods. I had hoped that by this point these cravings would have gone away. Do they ever go away? Or are these feelings something I'm going to have to battle the rest of my life?I am very much interested in sharing recipes, especially for dinner. Right now I am looking for a low-cal Lasagna recipe that includes meat.Stay well,P.S. How do you get colored,fancy text? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hi , Welcome to the group. I'm the lone male voice, and I'm in the Philly suburbs. Congrats on the 18 lbs so far, and I'm looking forward to hearing about even more. Jon "Do not wait for ideal circumstances, nor the best opportunities; they will never come." - Janet E. Stuart -----Original Message-----From: denise Sent: Wednesday, July 14, 2004 5:37 PMTo: ourweightlossjourney Subject: Hello AllI wanted to take the time to introduce myself and tell you how excited I am to belong to a weight-loss support group. So here goes, I live in San Diego and run a Family Childcare in my home. I also go to school part time in the evenings. I'm married and have three children and one grandchild. I started my diet the first week of June 2004. As of today I've lost 18lbs. I gained most of my weight after I had my last child, who is now 16! I don't feel hungry on the diet I'm on, but I often have cravings for high fat, high sugar foods. I had hoped that by this point these cravings would have gone away. Do they ever go away? Or are these feelings something I'm going to have to battle the rest of my life?I am very much interested in sharing recipes, especially for dinner. Right now I am looking for a low-cal Lasagna recipe that includes meat.Stay well,P.S. How do you get colored,fancy text? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hi , Welcome to the group. I'm the lone male voice, and I'm in the Philly suburbs. Congrats on the 18 lbs so far, and I'm looking forward to hearing about even more. Jon "Do not wait for ideal circumstances, nor the best opportunities; they will never come." - Janet E. Stuart -----Original Message-----From: denise Sent: Wednesday, July 14, 2004 5:37 PMTo: ourweightlossjourney Subject: Hello AllI wanted to take the time to introduce myself and tell you how excited I am to belong to a weight-loss support group. So here goes, I live in San Diego and run a Family Childcare in my home. I also go to school part time in the evenings. I'm married and have three children and one grandchild. I started my diet the first week of June 2004. As of today I've lost 18lbs. I gained most of my weight after I had my last child, who is now 16! I don't feel hungry on the diet I'm on, but I often have cravings for high fat, high sugar foods. I had hoped that by this point these cravings would have gone away. Do they ever go away? Or are these feelings something I'm going to have to battle the rest of my life?I am very much interested in sharing recipes, especially for dinner. Right now I am looking for a low-cal Lasagna recipe that includes meat.Stay well,P.S. How do you get colored,fancy text? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , I have Dr. Phil's book too. There is a lot of good info in there. Keep up the good work and keep us posted on your progress. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , I have Dr. Phil's book too. There is a lot of good info in there. Keep up the good work and keep us posted on your progress. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , I have Dr. Phil's book too. There is a lot of good info in there. Keep up the good work and keep us posted on your progress. ~Coco~ 294.6/292.6/1?? Weight Watchers 6/21/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 I am not a breast cancer patient, but a mammographer that truly cares and understands. I am working towards becoming a breast care coordinator and would love any input from all of you. Quote Link to comment Share on other sites More sharing options...
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