Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 Hi, JoAnne. Glad you found this support group. The support and knowledge you will find here is amazing. It has been a tremendous source of comfort for me. I'm 40 and was diagnosed last July. I also needed two surgeries. That's because the frozen section biopsy taken during the surgery indicated that the nodule was benign. A week later my surgeon called and said the right half had to be removed TOMORROW!!! So I had two thyroid surgeries, one week apart. This was followed by radioiodine treatment six weeks later. I'm now preparing for my next scan which will be in the middle of April. (The reason the right half had to be removed was because the initial biopsy on the left side was incorrect- it was NOT benign). So began my thyroid adventures!! I also have three kids (ages 10,8,2). Once you learn about the disease, it does become manageable. We have to remain vigilant for the rest of our lives but it is do-able and treatable and life DOES return to normal. (whatever that is!) Good luck to you. n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 Hi, JoAnne. Glad you found this support group. The support and knowledge you will find here is amazing. It has been a tremendous source of comfort for me. I'm 40 and was diagnosed last July. I also needed two surgeries. That's because the frozen section biopsy taken during the surgery indicated that the nodule was benign. A week later my surgeon called and said the right half had to be removed TOMORROW!!! So I had two thyroid surgeries, one week apart. This was followed by radioiodine treatment six weeks later. I'm now preparing for my next scan which will be in the middle of April. (The reason the right half had to be removed was because the initial biopsy on the left side was incorrect- it was NOT benign). So began my thyroid adventures!! I also have three kids (ages 10,8,2). Once you learn about the disease, it does become manageable. We have to remain vigilant for the rest of our lives but it is do-able and treatable and life DOES return to normal. (whatever that is!) Good luck to you. n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 Hi, JoAnne. Glad you found this support group. The support and knowledge you will find here is amazing. It has been a tremendous source of comfort for me. I'm 40 and was diagnosed last July. I also needed two surgeries. That's because the frozen section biopsy taken during the surgery indicated that the nodule was benign. A week later my surgeon called and said the right half had to be removed TOMORROW!!! So I had two thyroid surgeries, one week apart. This was followed by radioiodine treatment six weeks later. I'm now preparing for my next scan which will be in the middle of April. (The reason the right half had to be removed was because the initial biopsy on the left side was incorrect- it was NOT benign). So began my thyroid adventures!! I also have three kids (ages 10,8,2). Once you learn about the disease, it does become manageable. We have to remain vigilant for the rest of our lives but it is do-able and treatable and life DOES return to normal. (whatever that is!) Good luck to you. n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Welcome B!! Your post sounds so full of enthusiasm and eagerness....I think you'll be really happy with the support you find here! Bette in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 We're grateful to have YOU, too! Welcome and just chime in when you can. >I do not have a problem really losing the weight but keeping it off >has obviously been a problem. Yea, that seems to be a trend. For me, it was always important to see " the big picture. " That getting to my goal weight wasn't the main goal, but rather being a " healthy person " was my main goal, which required I eat well each day and exercise. There was no time limitation on improving my overall health, it was going to go on as long as I live. But, as a nice side efffect, keeping up those healthy habits made the weight come off and I hit my goal weight. >I tend from past experience to get 'comfortable' at a weight of >150....and then start to slip into my old habits. Because of my >body shape I can wear 12 pants and some 10's at that weight. My goal is to actually REACH my goal and to NOT backslide. > I have had this same problem in the past. It is part of the reason I stayed around that weight (150) for almost a year (after losing 20 pounds) before I got SERIOUS and got on down to my goal weight. (I'm 5'4 " .) April : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 We're grateful to have YOU, too! Welcome and just chime in when you can. >I do not have a problem really losing the weight but keeping it off >has obviously been a problem. Yea, that seems to be a trend. For me, it was always important to see " the big picture. " That getting to my goal weight wasn't the main goal, but rather being a " healthy person " was my main goal, which required I eat well each day and exercise. There was no time limitation on improving my overall health, it was going to go on as long as I live. But, as a nice side efffect, keeping up those healthy habits made the weight come off and I hit my goal weight. >I tend from past experience to get 'comfortable' at a weight of >150....and then start to slip into my old habits. Because of my >body shape I can wear 12 pants and some 10's at that weight. My goal is to actually REACH my goal and to NOT backslide. > I have had this same problem in the past. It is part of the reason I stayed around that weight (150) for almost a year (after losing 20 pounds) before I got SERIOUS and got on down to my goal weight. (I'm 5'4 " .) April : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 We're grateful to have YOU, too! Welcome and just chime in when you can. >I do not have a problem really losing the weight but keeping it off >has obviously been a problem. Yea, that seems to be a trend. For me, it was always important to see " the big picture. " That getting to my goal weight wasn't the main goal, but rather being a " healthy person " was my main goal, which required I eat well each day and exercise. There was no time limitation on improving my overall health, it was going to go on as long as I live. But, as a nice side efffect, keeping up those healthy habits made the weight come off and I hit my goal weight. >I tend from past experience to get 'comfortable' at a weight of >150....and then start to slip into my old habits. Because of my >body shape I can wear 12 pants and some 10's at that weight. My goal is to actually REACH my goal and to NOT backslide. > I have had this same problem in the past. It is part of the reason I stayed around that weight (150) for almost a year (after losing 20 pounds) before I got SERIOUS and got on down to my goal weight. (I'm 5'4 " .) April : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Thank you Jing. I appreciate your kind words. Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Thank you Jing. I appreciate your kind words. Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Hi Esther, I just wanted you to know that the rust colored and foamy urine is pretty common when someone with IgAN has a viral illness. It is referred to as a flare up. The good news is that usually the labs return to their baseline after the illness is over. I hope he feels better soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Esther, Welcome to the group, I'm glad you found us. However I am very sorry to hear of your son's possible diagnosis. Many people have given you some great info already. Let me add that I did exactly what you are doing now when I found out I might have this disease. I started asking lots of questions and looked up the worst case scenarios....but you can drive yourself nuts with that if you don't treat it as simply an information gathering exercise. You should just ride things out until you have a firm diagnosis in hand with lab values to go on. A few weeks of waiting isn't going to make a major change in the grand scheme of things, though I know it's hard not to do things to help him " right now " . I'm a mom too and I know it's hard to see our kids sick, I can only imagine how it is to see them chronically ill. Remember though that IgAN isn't a death sentence, only 30-50% of us will reach end stage and kids tend to be a bit more resilient with regards to this disease. Once your doctor has all the labs and biopsy report in hand he will tailor a plan of action to your son. Each of us progresses at a different rate so what works for one of us might actually harm another of us. This disease has to be managed on a case to case basis. There are a few things we tend to share like high blood pressure and low sodium diets due to that...but not all of us have high blood pressure either so there is no one right way of treatment. Please feel free to continue to ask questions and welcome again to the group. Amy G. New to the Group Aloha: My name is Esther and I am new here. I found this group looking for info for my 13 year old son. He was recently diagnosed as having glomerulonephritis/IGA/Berger's Disease. We don't know much about it but am learning fast. He goes for a kidney biopsy next Friday. Could you please tell me if it is " normal " for this disease to just appear virtually out of nowhere? My son was very healthy before this happened. Anyway, it's nice to be here. I've been reading the archives and everyone seems very friendly and helpful. Esther in HI 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 December 8, 2004 Report Share Posted December 8, 2004 Hi Esther! Sorry to be belated in my welcome message, but... welcome! I was diagnosed with IGAN when I was 13. With luck they will quickly find something that will work for your son and none of you will have to worry about it much. I've had it for eight years with no problems. My parents worried a lot at first too, especially since it was so uncommon, but luckily they didn't have to worry long. I'm on fish oil and a BP med. Glad your son went through the biopsy okay. I was such a stressed-out kid back then, I stayed completely awake and alert even through the happy drugs. I was convinced they were going to reach in and poke a huge hole in my kidney! It's funny to me now. With luck, these experiences will be similarly light subjects for you and your son sometime soon. Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Hi Esther! Sorry to be belated in my welcome message, but... welcome! I was diagnosed with IGAN when I was 13. With luck they will quickly find something that will work for your son and none of you will have to worry about it much. I've had it for eight years with no problems. My parents worried a lot at first too, especially since it was so uncommon, but luckily they didn't have to worry long. I'm on fish oil and a BP med. Glad your son went through the biopsy okay. I was such a stressed-out kid back then, I stayed completely awake and alert even through the happy drugs. I was convinced they were going to reach in and poke a huge hole in my kidney! It's funny to me now. With luck, these experiences will be similarly light subjects for you and your son sometime soon. Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Hi Esther! Sorry to be belated in my welcome message, but... welcome! I was diagnosed with IGAN when I was 13. With luck they will quickly find something that will work for your son and none of you will have to worry about it much. I've had it for eight years with no problems. My parents worried a lot at first too, especially since it was so uncommon, but luckily they didn't have to worry long. I'm on fish oil and a BP med. Glad your son went through the biopsy okay. I was such a stressed-out kid back then, I stayed completely awake and alert even through the happy drugs. I was convinced they were going to reach in and poke a huge hole in my kidney! It's funny to me now. With luck, these experiences will be similarly light subjects for you and your son sometime soon. Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 IgAN appear " out of nowhere " ? Yes. Some people have lots of visible blood in the urine and heavy proteinuria, some have nothing at all except for what can be found in a urinalysis and blood work. The latter may not even know they have anything. But, for either group, it does seem to come out of nowhere. Some have it discovered while they have a sore throat or something like that. I suspect that everyone for whom it's discovered has probably had it quietly developing a long while without even knowing. Then, some event like a routine medical, or visible blood in the urine in conjunction with a sore throat just happens to make it more apparent that something is not right. Pierre New to the Group > > > Aloha: > My name is Esther and I am new here. I found this group looking for > info for my 13 year old son. He was recently diagnosed as having > glomerulonephritis/IGA/Berger's Disease. We don't know much about > it but am learning fast. He goes for a kidney biopsy next Friday. > Could you please tell me if it is " normal " for this disease to just > appear virtually out of nowhere? My son was very healthy before > this happened. > Anyway, it's nice to be here. I've been reading the archives and > everyone seems very friendly and helpful. > Esther in HI > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 > Hi Kathleen > > Congratulations on getting your fistula done. It may sound strange to > congratulate someone for that, but, it shows that you have a good > nephrologist, and that you accept the situation you are faced with. You know, even after waiting for it to happen for well over 20 years I was still kind of shaky and disturbed when my neph told me it was time. Not surprising, I know. About a week later my husband and I took our summer vacation, two weeks of road trip and ferry rides up the Inside Passage. It gave us both time to be together and get used to the idea of " wow, this is really it " before having to go in and get the surgery done. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 > Hi Kathleen > > Congratulations on getting your fistula done. It may sound strange to > congratulate someone for that, but, it shows that you have a good > nephrologist, and that you accept the situation you are faced with. You know, even after waiting for it to happen for well over 20 years I was still kind of shaky and disturbed when my neph told me it was time. Not surprising, I know. About a week later my husband and I took our summer vacation, two weeks of road trip and ferry rides up the Inside Passage. It gave us both time to be together and get used to the idea of " wow, this is really it " before having to go in and get the surgery done. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 > > Aloha Kathleen and welcome. I'm new too. I joined in order to help my 13 year old boy who was diagnosed with glomerulonephritis/IGA. > Nice to meet you, > Esther in HI I am so glad you have this group for support. I always wondered how my parents felt when I first got sick at age 9 - and made it through! That first 18 months were pretty stressful and we've never discussed it. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 > > Aloha Kathleen and welcome. I'm new too. I joined in order to help my 13 year old boy who was diagnosed with glomerulonephritis/IGA. > Nice to meet you, > Esther in HI I am so glad you have this group for support. I always wondered how my parents felt when I first got sick at age 9 - and made it through! That first 18 months were pretty stressful and we've never discussed it. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 > > Aloha Kathleen and welcome. I'm new too. I joined in order to help my 13 year old boy who was diagnosed with glomerulonephritis/IGA. > Nice to meet you, > Esther in HI I am so glad you have this group for support. I always wondered how my parents felt when I first got sick at age 9 - and made it through! That first 18 months were pretty stressful and we've never discussed it. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 We have a few members who have IgAN and HSP so you are in good company on the HSP part of things. And kidney failure is kidney failure no matter what caused it so again you are more than welcome here. ) > > It's nice to meet you and I hope you can find the support you need within our ranks. > > Amy G. I can't tell you how nice it is to know that others out there have some of the same things I do or did. I've never run across anyone else who'd had HSP, much less even heard of it. Thanks for the welcome, I've already spent a couple of hours roaming through the archives. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 We have a few members who have IgAN and HSP so you are in good company on the HSP part of things. And kidney failure is kidney failure no matter what caused it so again you are more than welcome here. ) > > It's nice to meet you and I hope you can find the support you need within our ranks. > > Amy G. I can't tell you how nice it is to know that others out there have some of the same things I do or did. I've never run across anyone else who'd had HSP, much less even heard of it. Thanks for the welcome, I've already spent a couple of hours roaming through the archives. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Hi, My name is and I have just finished treatment for stage II breast cancer, node negative. I am getting ready to begin Arimitex and was wondering if anyone had any feedback on the side effects. I also have neuropathy in both of my feet and was wondering if those of you that have had this have found it improving over time. I received 3 treatments of 5-FU, Epirubicin and Cytoxan and 3 treatments of Taxotere. Just as I was completing my radiation treatments my husband was diagnosed with throat cancer. He has just finished his last radiation treatment and we are praying for a good prognosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 , Welcome to the group. I had CMF and didn't have any problems. I do know some of the women do have neuropathy from some of the chemos. I am sorry to hear about your husband. I will keep you both in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161 Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my ornaments at www.geocities.com/chucky5741/bcornament.html Lots of breast cancer info and gifts at: www.cancerclub.com New to the Group Hi, My name is and I have just finished treatment for stage II breast cancer, node negative. I am getting ready to begin Arimitex and was wondering if anyone had any feedback on the side effects. I also have neuropathy in both of my feet and was wondering if those of you that have had this have found it improving over time. I received 3 treatments of 5-FU, Epirubicin and Cytoxan and 3 treatments of Taxotere. Just as I was completing my radiation treatments my husband was diagnosed with throat cancer. He has just finished his last radiation treatment and we are praying for a good prognosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Hi – My mother had throat cancer and received radiation treatments for it. Although her throat hurt and she had problems eating, the radiation did the trick. Unfortunately she has passed now, but she died cancer free. New to the Group Hi, My name is and I have just finished treatment for stage II breast cancer, node negative. I am getting ready to begin Arimitex and was wondering if anyone had any feedback on the side effects. I also have neuropathy in both of my feet and was wondering if those of you that have had this have found it improving over time. I received 3 treatments of 5-FU, Epirubicin and Cytoxan and 3 treatments of Taxotere. Just as I was completing my radiation treatments my husband was diagnosed with throat cancer. He has just finished his last radiation treatment and we are praying for a good prognosis. Quote Link to comment Share on other sites More sharing options...
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