Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Hi , You are so kind to answer even when I know you are facing so much yourself. I don't really understand about PD and hemodialysis and what it all means, but I do pray for you. Elisabet's not the only one worn out with this disease. We've been at this 3 years now. Three years of different meds at different levels, neph visits every 2 to 3 months, side effects, fatigue, more meds ... but we haven't found anything that keeps her protein down longer than 2 or 3 months. Then it always goes back up again. Even her cholesterol. She's been on Zetia for 6 months. It initially took her cholesterol down 100 points and now it's back up over 300 again. It seems no matter what we give her (headache meds too), it only works a short period, and then bang, whatever we were treating is worse than before. I guess what I was asking is: Is this normal? Will it just keep going like this for years? Is this a typical experience with this disease? Is this part of what I have to " accept " ? I keep holding out hope that they'll find something to bring down (and keep down) her protein. Not so much to make the disease go away, but that she can feel better. She is so miserable. She feels so bad, day after day after day. I don't know how to help her anymore. I'm not even sure I understand what it is that is making her feel bad. I know it's more than just her headaches. I've tried so hard to take the advice given here that IgA isn't the end of the world and you can live a great, active life no matter how bad it gets, and I just marvel at how well those of you facing transplant/dialysis handle everything. You guys are amazing. Sometimes, I wish I could talk to your moms :-) , you have often talked of acceptance. It's one thing to accept the disease, but I'm having such a hard time accepting the fact that she feels so bad all the time. I wonder if the pred. is part of why she feels so terrible. I've never been on pred let alone a high dose. She just seems so out of it at times. I was so hoping to get her off it, but with her ratio up ... who knows what her neph will say (we see him on Monday). She's quit exercising again. I know it makes her feel better, but at 13, she doesn't seem to have what it takes to keep exercising when she feels so rotten. Both her neph. and her neuro have told me she is not depressed. That she just has to learn to cope with how she feels. I feel guilty for complaining. I'm sorry for venting. So many of you are facing much more difficult things in your lives. May God Bless you all. B., Elisabet's mom, 13 > > Oh , > > I can almost hear the deep disappointment in your email that Elisabet's > ratio went up. Has she recently been ill with a viral illness? That could > explain the increase. Other than that, I am really at a loss as to why it > increased after going down to 0.89. What did her Neph have to say about it? > > I am just so sorry you did not get good news. It seems we often live from > one set of lab results to another. > > God bless you. > > > > In a message dated 8/18/2005 4:42:20 A.M. Pacific Daylight Time, > laura@s... writes: > > We got back Elisabet's lab results yesterday. Her protein/creatinine > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > months 1.5, now after 6 months 2.0. What does this mean? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 : I read your post and pictured my mom writing it. As a parent, it has to be very hard to watch this, and as a parent myself, I feel for you. There were times when the meds I tried worked and then stopped - it can be frustrating. I think that some of these meds may not work as well in children due to metabolism differences too. When I see my mom, I will ask her how she dealt with it. I mean, during my tx she had 2 of her 3 children in surgery. Personally, I would have been bouncing off the walls. She seemed like she was a rock, but I know inside she was a mess of emotions. I do know that she had some close friends whom she confided in, and who were there for her. Bjanes laura@...> wrote: Hi , You are so kind to answer even when I know you are facing so much yourself. I don't really understand about PD and hemodialysis and what it all means, but I do pray for you. Elisabet's not the only one worn out with this disease. We've been at this 3 years now. Three years of different meds at different levels, neph visits every 2 to 3 months, side effects, fatigue, more meds ... but we haven't found anything that keeps her protein down longer than 2 or 3 months. Then it always goes back up again. Even her cholesterol. She's been on Zetia for 6 months. It initially took her cholesterol down 100 points and now it's back up over 300 again. It seems no matter what we give her (headache meds too), it only works a short period, and then bang, whatever we were treating is worse than before. I guess what I was asking is: Is this normal? Will it just keep going like this for years? Is this a typical experience with this disease? Is this part of what I have to " accept " ? I keep holding out hope that they'll find something to bring down (and keep down) her protein. Not so much to make the disease go away, but that she can feel better. She is so miserable. She feels so bad, day after day after day. I don't know how to help her anymore. I'm not even sure I understand what it is that is making her feel bad. I know it's more than just her headaches. I've tried so hard to take the advice given here that IgA isn't the end of the world and you can live a great, active life no matter how bad it gets, and I just marvel at how well those of you facing transplant/dialysis handle everything. You guys are amazing. Sometimes, I wish I could talk to your moms :-) , you have often talked of acceptance. It's one thing to accept the disease, but I'm having such a hard time accepting the fact that she feels so bad all the time. I wonder if the pred. is part of why she feels so terrible. I've never been on pred let alone a high dose. She just seems so out of it at times. I was so hoping to get her off it, but with her ratio up ... who knows what her neph will say (we see him on Monday). She's quit exercising again. I know it makes her feel better, but at 13, she doesn't seem to have what it takes to keep exercising when she feels so rotten. Both her neph. and her neuro have told me she is not depressed. That she just has to learn to cope with how she feels. I feel guilty for complaining. I'm sorry for venting. So many of you are facing much more difficult things in your lives. May God Bless you all. B., Elisabet's mom, 13 > > Oh , > > I can almost hear the deep disappointment in your email that Elisabet's > ratio went up. Has she recently been ill with a viral illness? That could > explain the increase. Other than that, I am really at a loss as to why it > increased after going down to 0.89. What did her Neph have to say about it? > > I am just so sorry you did not get good news. It seems we often live from > one set of lab results to another. > > God bless you. > > > > In a message dated 8/18/2005 4:42:20 A.M. Pacific Daylight Time, > laura@s... writes: > > We got back Elisabet's lab results yesterday. Her protein/creatinine > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > months 1.5, now after 6 months 2.0. What does this mean? 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 August 19, 2005 Report Share Posted August 19, 2005 My mom's had a really hard time, too. When the doctor finally told me I'll most likely need a transplant, I called her expecting to hear encouragement. But with my sister and brother as the two best potential matches, she said, " don't blame anyone if they don't want to give you a kidney, " after all, my sister's in law school, etc etc etc. Of course I would never pressure anyone, but they've already offered, and it's not the comment you expect from your mom when first realise the inevitable. I had nightmares about it. Of course she would support us if we went into surgery, the idea of two of her kids under the knife at the same time just wigged her out. She really wants to give me her kidney but after 2 strokes I don't think they'll let her. That rips her apart too. She's a doll though, a real trooper through all this. ---------- From: Cohen[sMTP:garymattcohen@...] Sent: Friday, August 19, 2005 6:07 AM To: iga-nephropathy Subject: Re: What does this mean? : I read your post and pictured my mom writing it. As a parent, it has to be very hard to watch this, and as a parent myself, I feel for you. There were times when the meds I tried worked and then stopped - it can be frustrating. I think that some of these meds may not work as well in children due to metabolism differences too. When I see my mom, I will ask her how she dealt with it. I mean, during my tx she had 2 of her 3 children in surgery. Personally, I would have been bouncing off the walls. She seemed like she was a rock, but I know inside she was a mess of emotions. I do know that she had some close friends whom she confided in, and who were there for her. Bjanes laura@...> wrote: Hi , You are so kind to answer even when I know you are facing so much yourself. I don't really understand about PD and hemodialysis and what it all means, but I do pray for you. Elisabet's not the only one worn out with this disease. We've been at this 3 years now. Three years of different meds at different levels, neph visits every 2 to 3 months, side effects, fatigue, more meds ... but we haven't found anything that keeps her protein down longer than 2 or 3 months. Then it always goes back up again. Even her cholesterol. She's been on Zetia for 6 months. It initially took her cholesterol down 100 points and now it's back up over 300 again. It seems no matter what we give her (headache meds too), it only works a short period, and then bang, whatever we were treating is worse than before. I guess what I was asking is: Is this normal? Will it just keep going like this for years? Is this a typical experience with this disease? Is this part of what I have to " accept " ? I keep holding out hope that they'll find something to bring down (and keep down) her protein. Not so much to make the disease go away, but that she can feel better. She is so miserable. She feels so bad, day after day after day. I don't know how to help her anymore. I'm not even sure I understand what it is that is making her feel bad. I know it's more than just her headaches. I've tried so hard to take the advice given here that IgA isn't the end of the world and you can live a great, active life no matter how bad it gets, and I just marvel at how well those of you facing transplant/dialysis handle everything. You guys are amazing. Sometimes, I wish I could talk to your moms :-) , you have often talked of acceptance. It's one thing to accept the disease, but I'm having such a hard time accepting the fact that she feels so bad all the time. I wonder if the pred. is part of why she feels so terrible. I've never been on pred let alone a high dose. She just seems so out of it at times. I was so hoping to get her off it, but with her ratio up ... who knows what her neph will say (we see him on Monday). She's quit exercising again. I know it makes her feel better, but at 13, she doesn't seem to have what it takes to keep exercising when she feels so rotten. Both her neph. and her neuro have told me she is not depressed. That she just has to learn to cope with how she feels. I feel guilty for complaining. I'm sorry for venting. So many of you are facing much more difficult things in your lives. May God Bless you all. B., Elisabet's mom, 13 > > Oh , > > I can almost hear the deep disappointment in your email that Elisabet's > ratio went up. Has she recently been ill with a viral illness? That could > explain the increase. Other than that, I am really at a loss as to why it > increased after going down to 0.89. What did her Neph have to say about it? > > I am just so sorry you did not get good news. It seems we often live from > one set of lab results to another. > > God bless you. > > > > In a message dated 8/18/2005 4:42:20 A.M. Pacific Daylight Time, > laura@s... writes: > > We got back Elisabet's lab results yesterday. Her protein/creatinine > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > months 1.5, now after 6 months 2.0. What does this mean? 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 August 19, 2005 Report Share Posted August 19, 2005 Hi , Our prayers and thoughts are with you and Elisabeth. Take care of both of you. Elaine mom to , 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Hi , I'm dipping in and out of posts - and yours jumped out at me. I hear the worry underlying your post. I know I scan every lab result expecting it to be like Elisabet's. Fortunately, thus far, 's increases seem to occur only in the winter - and then they back down again. However, I also know we are very lucky thus far. It could be that Elisabet is steriod resistant - and that different drugs are called for. The progression you've described is similar to that of other steriod resistant kids on the NephKids site. Many kids are successful with other drugs. What does your neph say? Does he have any other ideas? Generally, six months at that high a dose is considered a reasonable trial. We've looked at sites where kids write in - and they were rather lacking. NephKids is a great site for all sorts of pediatric renal disorders. They're also moderated by MD's - which can be useful. There is a large handful of kids (all FSGS kids) on the Nephkids site that have experienced similar things. I hope your neph can come up with a different, SUCCESSFUL drug regimen. Cy What does this mean? > We got back Elisabet's lab results yesterday. Her protein/creatinine > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > months 1.5, now after 6 months 2.0. What does this mean? It seems > that whatever we give her, it works initially and then stops working. > Is this typical? Have others experienced this? > > She is pretty discouraged and worn out (mostly with how she feels - > which is lousy). They did take her off Prozac, it wasn't helping her > headaches anyway and probably was making her feel worse. She's got > some great friends, but I've wondered if it would be helpful for her > to " talk " to another kid that has gone through or is going through > this. Somebody mentioned a kids site a while back, but I lost the > link. Does anybody know what it is? > > B, Elisabet's mom > > > > > > 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 August 20, 2005 Report Share Posted August 20, 2005 Both her neph. and her neuro have told me she is > not depressed. That she just has to learn to cope with how she feels. > > I feel guilty for complaining. I'm sorry for venting. So many of you > are facing much more difficult things in your lives. May God Bless > you all. > > B., Elisabet's mom, 13 , I'm going to be blunt, a neph and a nuero are not therapists. It's easy to say she just needs to learn how to cope with how she feels, but it's sure isn't helpful. If you can swing it financially, find a therapist for Elisabet who can elaluate her for depression. She might also benefit from talking with a nuetral person. There may be things she'd like to say or share but feels she can't with you. You never know, she may be acutely aware of your feelings, your worries, and may be concerned if she shares how she feels she could be making things worse for you. Kids want to protect their parents- no matter how old we are ;-). Would you please do something for yourself, give yourself a break. We each do the best we can. Never be sorry for venting, we all need to do it now and then. take care, sfbay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Gevevieve, When I read your post it brought back alot of memories. My oldest son Brent received a kidney from his brother 21 months ago. These are my only 2 children. Brent was 28 and Matt was 24. I can't describe what it was like to see your only 2 children being rolled down the hall to surgery. How did my husband and I get through it? We had numerous prayers being lifted up for our family and a waiting room full of beautiful extended family members and church friends to support us. I, too, was like your mom. I wanted to be the donor. I went through the workup and was considered to be an appropriate donor. However, my son Matt was a perfect match. I,as the mother, was disappointed that I was not the chosen one. I felt like as a mother it was my responsibility to be able to fix things. Your mother's reaction is probably very natural. At first I didn't want to hear about a transplant, I was in denial, hoping if I ignored things the problem would go away. I also wanted to be the one in surgery so I would be asleep and would not have to deal with the emotional part of seeing both my sons go through this (I guess I was scared!). However things went great. Our 2 sons are closer than ever. Brent had a second son shortly after his transplant and surprised his donor brother by naming Chase after his very wonderful uncle. It has been wonderful to see Brent in his new life and I cannot describe the joy it has given his brother! Be patient with your mom. She is riding on an emotional rollcoaster much like you. Just know that things will work out and the strength will come to see each of you through the process. You have my prayers! Lynne Re: What does this mean? : I read your post and pictured my mom writing it. As a parent, it has to be very hard to watch this, and as a parent myself, I feel for you. There were times when the meds I tried worked and then stopped - it can be frustrating. I think that some of these meds may not work as well in children due to metabolism differences too. When I see my mom, I will ask her how she dealt with it. I mean, during my tx she had 2 of her 3 children in surgery. Personally, I would have been bouncing off the walls. She seemed like she was a rock, but I know inside she was a mess of emotions. I do know that she had some close friends whom she confided in, and who were there for her. Bjanes laura@...> wrote: Hi , You are so kind to answer even when I know you are facing so much yourself. I don't really understand about PD and hemodialysis and what it all means, but I do pray for you. Elisabet's not the only one worn out with this disease. We've been at this 3 years now. Three years of different meds at different levels, neph visits every 2 to 3 months, side effects, fatigue, more meds ... but we haven't found anything that keeps her protein down longer than 2 or 3 months. Then it always goes back up again. Even her cholesterol. She's been on Zetia for 6 months. It initially took her cholesterol down 100 points and now it's back up over 300 again. It seems no matter what we give her (headache meds too), it only works a short period, and then bang, whatever we were treating is worse than before. I guess what I was asking is: Is this normal? Will it just keep going like this for years? Is this a typical experience with this disease? Is this part of what I have to " accept " ? I keep holding out hope that they'll find something to bring down (and keep down) her protein. Not so much to make the disease go away, but that she can feel better. She is so miserable. She feels so bad, day after day after day. I don't know how to help her anymore. I'm not even sure I understand what it is that is making her feel bad. I know it's more than just her headaches. I've tried so hard to take the advice given here that IgA isn't the end of the world and you can live a great, active life no matter how bad it gets, and I just marvel at how well those of you facing transplant/dialysis handle everything. You guys are amazing. Sometimes, I wish I could talk to your moms :-) , you have often talked of acceptance. It's one thing to accept the disease, but I'm having such a hard time accepting the fact that she feels so bad all the time. I wonder if the pred. is part of why she feels so terrible. I've never been on pred let alone a high dose. She just seems so out of it at times. I was so hoping to get her off it, but with her ratio up ... who knows what her neph will say (we see him on Monday). She's quit exercising again. I know it makes her feel better, but at 13, she doesn't seem to have what it takes to keep exercising when she feels so rotten. Both her neph. and her neuro have told me she is not depressed. That she just has to learn to cope with how she feels. I feel guilty for complaining. I'm sorry for venting. So many of you are facing much more difficult things in your lives. May God Bless you all. B., Elisabet's mom, 13 > > Oh , > > I can almost hear the deep disappointment in your email that Elisabet's > ratio went up. Has she recently been ill with a viral illness? That could > explain the increase. Other than that, I am really at a loss as to why it > increased after going down to 0.89. What did her Neph have to say about it? > > I am just so sorry you did not get good news. It seems we often live from > one set of lab results to another. > > God bless you. > > > > In a message dated 8/18/2005 4:42:20 A.M. Pacific Daylight Time, > laura@s... writes: > > We got back Elisabet's lab results yesterday. Her protein/creatinine > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > months 1.5, now after 6 months 2.0. What does this mean? 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 August 20, 2005 Report Share Posted August 20, 2005 B, I think that you are pretty amazing mom, trying to help your daughter cope with the meds. Prednisone can wreak a lot of havoc in their side effects. I can't really recommend anything except trying to maintain a positive attitude. Having to take meds totally suck, and really, having sickness totally sucks too, as I am sure many will agree here. If this is what we have to deal with, however, it is not giving up to accept it. Rather, accepting is really step one of a new journey to managing my disease so that I can enjoy my life, despite the challenges. I know that Elisabet, being only 13, this could be very hard for her to understand. Doing something fun as exercise may be helpful to encourage her to exercise, b/c I do think exercise helps alleviate symptoms and promote a positive attitude. It will still be a struggle, I hope that these suggestions might help you and Elisabet. *hugs* Sophia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Hi B, Sorry for the delay in getting back to you. I hear the heartache in your post and I can understand how both you and Bilsabet are worn down by this. Have you heard back from the Neph on her results yet? I think you had an appointment today but I am way behind in postings yet again. I know that when I took Prednisone for a very short while, I felt terrible on it. I hope some of what she is experiencing is due to the meds and perhaps an adjustment will help. I pray strength and perseverance for you and Elisabet. Re: What does this mean? Hi , Elisabet's not the only one worn out with this disease. We've been at this 3 years now. Three years of different meds at different levels, neph visits every 2 to 3 months, side effects, fatigue, more meds ... but we haven't found anything that keeps her protein down longer than 2 or 3 months. Then it always goes back up again. Even her cholesterol. She's been on Zetia for 6 months. It initially took her cholesterol down 100 points and now it's back up over 300 again. It seems no matter what we give her (headache meds too), it only works a short period, and then bang, whatever we were treating is worse than before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Hi Lynne, Thanks for the note. I'm glad to hear things worked out so well for your family, and I hope with time mine will have the same outcome. We've always been pretty close, and this has really shaken everyone up, especially with my mom getting sick too. She keeps saying, " I gave you your first kidneys, I'll give you your next one! " I don't discourage her, I figure if it works out, great, if it doesn't, I'm not the one to make that decision. I'm just scared for her with her own medical conditions....but I know the transplant teams are trained to recognize who is fit for surgery and who is not. Anyway, thanks again. It's nice to hear perspective from the other side, especially from someone who's been there but isn't necessarily involved in my ordeal. It's easy to overreact when it's your own family! Thanks so much for sharing your experience. I hope mine works out just as well. take care, genevieve ---------- From: Lynne [sMTP:r.jenkins@...] Sent: Saturday, August 20, 2005 12:31 AM To: iga-nephropathy Subject: Re: What does this mean? Gevevieve, When I read your post it brought back alot of memories. My oldest son Brent received a kidney from his brother 21 months ago. These are my only 2 children. Brent was 28 and Matt was 24. I can't describe what it was like to see your only 2 children being rolled down the hall to surgery. How did my husband and I get through it? We had numerous prayers being lifted up for our family and a waiting room full of beautiful extended family members and church friends to support us. I, too, was like your mom. I wanted to be the donor. I went through the workup and was considered to be an appropriate donor. However, my son Matt was a perfect match. I,as the mother, was disappointed that I was not the chosen one. I felt like as a mother it was my responsibility to be able to fix things. Your mother's reaction is probably very natural. At first I didn't want to hear about a transplant, I was in denial, pictured my mom writing it. As a parent, it has to be very hard to watch this, and as a parent myself, I feel for you. There were times when the meds I tried worked and then stopped - it can be frustrating. I think that some of these meds may not work as well in children due to metabolism differences too. When I see my mom, I will ask her how she dealt with it. I mean, during my tx she had 2 of her 3 children in surgery. Personally, I would have been bouncing off the walls. She seemed like she was a rock, but I know inside she was a mess of emotions. I do know that she had some close friends whom she confided in, and who were there for her. Bjanes laura@...> wrote: Hi , You are so kind to answer even when I know you are facing so much yourself. I don't really understand about PD and hemodialysis and what it all means, but I do pray for you. Elisabet's not the only one worn out with this disease. We've been at this 3 years now. Three years of different meds at different levels, neph visits every 2 to 3 months, side effects, fatigue, more meds ... but we haven't found anything that keeps her protein down longer than 2 or 3 months. Then it always goes back up again. Even her cholesterol. She's been on Zetia for 6 months. It initially took her cholesterol down 100 points and now it's back up over 300 again. It seems no matter what we give her (headache meds too), it only works a short period, and then bang, whatever we were treating is worse than before. I guess what I was asking is: Is this normal? Will it just keep going like this for years? Is this a typical experience with this disease? Is this part of what I have to " accept " ? I keep holding out hope that they'll find something to bring down (and keep down) her protein. Not so much to make the disease go away, but that she can feel better. She is so miserable. She feels so bad, day after day after day. I don't know how to help her anymore. I'm not even sure I understand what it is that is making her feel bad. I know it's more than just her headaches. I've tried so hard to take the advice given here that IgA isn't the end of the world and you can live a great, active life no matter how bad it gets, and I just marvel at how well those of you facing transplant/dialysis handle everything. You guys are amazing. Sometimes, I wish I could talk to your moms :-) , you have often talked of acceptance. It's one thing to accept the disease, but I'm having such a hard time accepting the fact that she feels so bad all the time. I wonder if the pred. is part of why she feels so terrible. I've never been on pred let alone a high dose. She just seems so out of it at times. I was so hoping to get her off it, but with her ratio up ... who knows what her neph will say (we see him on Monday). She's quit exercising again. I know it makes her feel better, but at 13, she doesn't seem to have what it takes to keep exercising when she feels so rotten. Both her neph. and her neuro have told me she is not depressed. That she just has to learn to cope with how she feels. I feel guilty for complaining. I'm sorry for venting. So many of you are facing much more difficult things in your lives. May God Bless you all. B., Elisabet's mom, 13 > > Oh , > > I can almost hear the deep disappointment in your email that Elisabet's > ratio went up. Has she recently been ill with a viral illness? That could > explain the increase. Other than that, I am really at a loss as to why it > increased after going down to 0.89. What did her Neph have to say about it? > > I am just so sorry you did not get good news. It seems we often live from > one set of lab results to another. > > God bless you. > > > > In a message dated 8/18/2005 4:42:20 A.M. Pacific Daylight Time, > laura@s... writes: > > We got back Elisabet's lab results yesterday. Her protein/creatinine > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > months 1.5, now after 6 months 2.0. What does this mean? 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 August 23, 2005 Report Share Posted August 23, 2005 Hi Genevieve I can pretty much guarantee that nobody gets past the transplant surgeon's approval if they are not totally fit to donate a kidney. It's the single most thorough examination most people ever have. Not that this is the case here, but there is also a pretty serious psychological evaluation which many people don't pass. This one is intended to ensure the kidney is being donated for the right reasons and without any family pressure. When a potential donor gets past all that, you can be sure he or she is fit for both the surgery and for life with just one kidney. Pierre RE: What does this mean? > Hi Lynne, > Thanks for the note. I'm glad to hear things worked out so well for your > family, and I hope with time mine will have the same outcome. We've always > been pretty close, and this has really shaken everyone up, especially with > my mom getting sick too. She keeps saying, " I gave you your first kidneys, > I'll give you your next one! " I don't discourage her, I figure if it works > out, great, if it doesn't, I'm not the one to make that decision. I'm just > scared for her with her own medical conditions....but I know the > transplant teams are trained to recognize who is fit for surgery and who > is not. > > Anyway, thanks again. It's nice to hear perspective from the other side, > especially from someone who's been there but isn't necessarily involved in > my ordeal. It's easy to overreact when it's your own family! Thanks so > much for sharing your experience. I hope mine works out just as well. > > take care, > genevieve > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hi Pierre, Good to know. I'll just stand back and see what happens now....let go and let God, as they say. Thanks for passing this along. genevieve ---------- From: Pierre Lachaine[sMTP:pgl-groups@...] Sent: Tuesday, August 23, 2005 4:37 AM To: iga-nephropathy Subject: Re: What does this mean? Hi Genevieve I can pretty much guarantee that nobody gets past the transplant surgeon's approval if they are not totally fit to donate a kidney. It's the single most thorough examination most people ever have. Not that this is the case here, but there is also a pretty serious psychological evaluation which many people don't pass. This one is intended to ensure the kidney is being donated for the right reasons and without any family pressure. When a potential donor gets past all that, you can be sure he or she is fit for both the surgery and for life with just one kidney. Pierre RE: What does this mean? > Hi Lynne, > Thanks for the note. I'm glad to hear things worked out so well for your > family, and I hope with time mine will have the same outcome. We've always > been pretty close, and this has really shaken everyone up, especially with > my mom getting sick too. She keeps saying, " I gave you your first kidneys, > I'll give you your next one! " I don't discourage her, I figure if it works > out, great, if it doesn't, I'm not the one to make that decision. I'm just > scared for her with her own medical conditions....but I know the > transplant teams are trained to recognize who is fit for surgery and who > is not. > > Anyway, thanks again. It's nice to hear perspective from the other side, > especially from someone who's been there but isn't necessarily involved in > my ordeal. It's easy to overreact when it's your own family! Thanks so > much for sharing your experience. I hope mine works out just as well. > > take care, > genevieve > > 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 August 23, 2005 Report Share Posted August 23, 2005 , Elaine, , Sophia, Rita, Cy, , Betsy, and sorry if I missed anybody else, Thanks to each of you for responding to my post last week. I was feeling so frustrated and worn down. It was really comforting to know you all understand. I appreciated all of your replies. Sorry it's taken me this long to respond. I was waiting to see Elisabet's neph, so I would know where things stand. As of yesterday's visit, he is weaning her off pred, with a 10 week taper down. I was surprised it would be so " fast " . He told us twice before that the wean would take 6-12 months. When I asked him about it, he explained that the slow wean was only if it was working. Since the pred. didn't reduce her protein, he said he can taper her down quickly. Makes sense. I just didn't understand that until now. Elisabet is thrilled to be getting off pred. I'm convinced that it has really contributed to her feeling so depressed and miserable. Even with her headaches, she felt a lot better before going on pred. If it's not working, I'm glad to have her off it. As for her ratio, even though it's creeping up again, he said no new meds at this point. He said he would like to increase her Diovan, but her b/p isn't high enough. We'll do labs in 2 months and see where things are as she weans off the pred. She starts yet a new headache medicine this week, so we'll see if things improve on that front. Thanks for the encouragement, B, Elisabet's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Hi Betsy, I'm just curious; at what age was your son diagnosed? Was he on lots of medication as a teenager? I guess many people on this board were not treated as teens even if they were diagnosed because IgA was thought to be benign. So I'm curious to hear your son's story. If I remember correctly, he was eventually transplanted with your kidney (please forgive me if I'm wrong). I'm sure you've been a wonderful support to him all along. Elisabet is going to be weaning off pred. and although we're sorry it didn't work, we're relieved to have her off it. B, Elisabet's mom > > > We got back Elisabet's lab results yesterday. Her protein/creatinine > > ratio is 2.0. She's been on 80mg prednisone (eod) for 6 months. In > > Feb. her ratio was 2.14. After two months her ratio was 0.89, after 4 > > months 1.5, now after 6 months 2.0. What does this mean? It seems > > that whatever we give her, it works initially and then stops working. > > Is this typical? Have others experienced this? > > > > She is pretty discouraged and worn out (mostly with how she feels - > > which is lousy). They did take her off Prozac, it wasn't helping her > > headaches anyway and probably was making her feel worse. She's got > > some great friends, but I've wondered if it would be helpful for her > > to " talk " to another kid that has gone through or is going through > > this. Somebody mentioned a kids site a while back, but I lost the > > link. Does anybody know what it is? > > > > B, Elisabet's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Thanks Cy, I'm so glad 's numbers have held low and stable. It's a great encouragment to the rest of us that it can happen. I don't know if Elisabet is steroid resistant or not, but at least if the pred is not working, we're happy to get her off it. We were surprised her neph doesn't want to try anything else (we really expected more powerful drugs), but very relieved too. She needs a break and now she's going to get one, for the next 3 months anyway. :-) I've actually been lurking on the NephKids site for several months now. I've never seen a post from a parent with a child with IgA, so I've been hesitant to ask any questions. It seems the children on that site are so very seriously ill (so many transplanted toddlers and babies). Wow, I feel for those parents. Makes my life look easy. B, Elisabet's mom > Hi , > > I'm dipping in and out of posts - and yours jumped out at me. I hear the > worry underlying your post. I know I scan every lab result expecting it to > be like Elisabet's. Fortunately, thus far, 's increases seem to occur > only in the winter - and then they back down again. However, I also know we > are very lucky thus far. > > It could be that Elisabet is steriod resistant - and that different drugs > are called for. The progression you've described is similar to that of > other steriod resistant kids on the NephKids site. Many kids are successful > with other drugs. What does your neph say? Does he have any other ideas? > Generally, six months at that high a dose is considered a reasonable trial. > > We've looked at sites where kids write in - and they were rather lacking. > NephKids is a great site for all sorts of pediatric renal disorders. > They're also moderated by MD's - which can be useful. There is a large > handful of kids (all FSGS kids) on the Nephkids site that have experienced > similar things. > > I hope your neph can come up with a different, SUCCESSFUL drug regimen. > > Cy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 Thanks , I think you are amazing to keep up with the postings at all. I posted a summary of her neph visit. We are trusting that she is going to feel better after a while. I pray the same for you. B, Elisabet's mom > Hi B, > > Sorry for the delay in getting back to you. I hear the heartache in > your post and I can understand how both you and Elisabet are worn down by this. > > Have you heard back from the Neph on her results yet? I think you had > an appointment today but I am way behind in postings yet again. I know > that when I took Prednisone for a very short while, I felt terrible on > it. I hope some of what she is experiencing is due to the meds and > perhaps an adjustment will help. > > I pray strength and perseverance for you and Elisabet. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Hi B, I am very glad Elisabet will be weaned off the Prednisone. I'll bet she will feel much better once she is off it. When I was on the plane yesterday, I read an article in a magazine about Melatonin helping with headaches. Now, I am not a doctor, but it might be worth asking. Apparently there is some research that Melatonin at night helps to significantly reduce both the frequency and duration of even migraines. I hope that the new mediation help her headaches. In a message dated 8/23/2005 7:07:31 P.M. Pacific Daylight Time, laura@... writes: As of yesterday's visit, he is weaning her off pred, with a 10 week taper down. I was surprised it would be so " fast " . He told us twice before that the wean would take 6-12 months. When I asked him about it, he explained that the slow wean was only if it was working. Since the pred. didn't reduce her protein, he said he can taper her down quickly. Makes sense. I just didn't understand that until now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Hi , Glad to hear that Elizabet is getting a break from the steroids. Hopefully, it will help with some of the other issues as well. I would not be hesitant to ask questions on NephKids. There are a handful of other IgAN kids there - but like you they're not that vocal. It can be very useful have another opinion from their moderators - especially when treatments don't seem to be working.. Manu did his share of electronic handholding with me back when was on cyclo and during the pred IVs. I so dread the day he steps down from being moderator. We had the privilege of meeting him when he was in town for a wedding last year. Dr. Sue has also been very helpful, off line, to friends of mine who wanted a second opinion. They are both great resources with hearts of gold. Best wishes for an easy taper! Cy Re: What does this mean? > Thanks Cy, > > I'm so glad 's numbers have held low and stable. It's a great > encouragment to the rest of us that it can happen. I don't know if > Elisabet is steroid resistant or not, but at least if the pred is not > working, we're happy to get her off it. We were surprised her neph > doesn't want to try anything else (we really expected more powerful > drugs), but very relieved too. She needs a break and now she's going > to get one, for the next 3 months anyway. :-) > > I've actually been lurking on the NephKids site for several months > now. I've never seen a post from a parent with a child with IgA, so > I've been hesitant to ask any questions. It seems the children on > that site are so very seriously ill (so many transplanted toddlers and > babies). Wow, I feel for those parents. Makes my life look easy. > > B, Elisabet's mom > > 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 August 24, 2005 Report Share Posted August 24, 2005 As I've said before, the prednisone didn't work for me either. I too was weaned off of it quickly and honestly felt no side effects from the taper - just incredible relief to be off of it. I also feel that it contributed to my depression....I think everyone is different, but for me it was very difficult to face myself in the mirror...I had gained so much weight from it and was so uncomfortable about that. I hope and pray that Elisabet's depression will lift soon. Please keep us posted on how she's doing. Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 My son was diagnosed at 13, after having a few episodes of very dark urine. He initially was on Prednisone, ACE inhibitor, and fish oil but was tapered off the pred after about a year because it didn't seem to make any difference. We were all so pleased with the discontinuation of the pred. He remained fairly stable until he turned 18 and then suddenly developed the anemia of CRF when his creatinine was only at 2.0. But then he declined fairly rapidly over the next year and a half, and when he was 19 they began talking about dialysis or transplant. He lasted until he was 21 and had the transplant (you're right - my kidney) over the summer between his jr. and sr. year in college. I think he was sorry afterwards that he didn't go ahead with the transplant sooner, but the decline was gradual enough that he lost track of how bad he felt. After the surgery, the transformation was miraculous. Betsy > Hi Betsy, > > I'm just curious; at what age was your son diagnosed? Was he on lots > of medication as a teenager? I guess many people on this board were > not treated as teens even if they were diagnosed because IgA was > thought to be benign. So I'm curious to hear your son's story. If I > remember correctly, he was eventually transplanted with your kidney > (please forgive me if I'm wrong). I'm sure you've been a wonderful > support to him all along. > > Elisabet is going to be weaning off pred. and although we're sorry it > didn't work, we're relieved to have her off it. > > B, Elisabet's mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2005 Report Share Posted August 24, 2005 Hi Betsy, That is so encouraging to me to hear that felt so much better after his transplant. I hope I experience the same thing! Re: What does this mean? My son was diagnosed at 13, after having a few episodes of very dark urine. He initially was on Prednisone, ACE inhibitor, and fish oil but was tapered off the pred after about a year because it didn't seem to make any difference. We were all so pleased with the discontinuation of the pred. He remained fairly stable until he turned 18 and then suddenly developed the anemia of CRF when his creatinine was only at 2.0. But then he declined fairly rapidly over the next year and a half, and when he was 19 they began talking about dialysis or transplant. He lasted until he was 21 and had the transplant (you're right - my kidney) over the summer between his jr. and sr. year in college. I think he was sorry afterwards that he didn't go ahead with the transplant sooner, but the decline was gradual enough that he lost track of how bad he felt. After the surgery, the transformation was miraculous. Betsy > Hi Betsy, > > I'm just curious; at what age was your son diagnosed? Was he on lots > of medication as a teenager? I guess many people on this board were > not treated as teens even if they were diagnosed because IgA was > thought to be benign. So I'm curious to hear your son's story. If I > remember correctly, he was eventually transplanted with your kidney > (please forgive me if I'm wrong). I'm sure you've been a wonderful > support to him all along. > > Elisabet is going to be weaning off pred. and although we're sorry it > didn't work, we're relieved to have her off it. > > B, Elisabet's mom > > 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 August 25, 2005 Report Share Posted August 25, 2005 I find that Betsy's experience with this is invaluable. We have plenty of parents of children with IgAN, but we don't have many who have had time to go the whole route from childhood IgAN to adulthood, at least not yet. Pierre Re: What does this mean? > > My son was diagnosed at 13, after having a few episodes of very dark > urine. He initially was on Prednisone, ACE inhibitor, and fish oil > but was tapered off the pred after about a year because it didn't > seem to make any difference. We were all so pleased with the > discontinuation of the pred. He remained fairly stable until he > turned 18 and then suddenly developed the anemia of CRF when his > creatinine was only at 2.0. But then he declined fairly rapidly over > the next year and a half, and when he was 19 they began talking about > dialysis or transplant. He lasted until he was 21 and had the > transplant (you're right - my kidney) over the summer between his jr. > and sr. year in college. I think he was sorry afterwards that he > didn't go ahead with the transplant sooner, but the decline was > gradual enough that he lost track of how bad he felt. After the > surgery, the transformation was miraculous. > > Betsy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 I'm sure you'll be amazed. I hope it's soon! Betsy > Hi Betsy, > > That is so encouraging to me to hear that felt so much better > after his transplant. I hope I experience the same thing! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Thanks, Pierre. I'm glad to be of some help here. And is now really into adulthood: as of yesterday, he is the proud co-owner of a 30 year mortgage (and the house that goes with it) and has a fiance. He proposed to , his girlfriend of 6 years who has gone through some very tough times with him and has been wonderfully loyal and dear. It's another terrific milestone in his post-transplant life. Betsy > I find that Betsy's experience with this is invaluable. We have > plenty of > parents of children with IgAN, but we don't have many who have had > time to > go the whole route from childhood IgAN to adulthood, at least not yet. > Pierre > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi B., I'm glad to hear that the dr has decided to wean her off pred. It's pretty harsh drug to take, and if it isn't working, it's better to be weaned off of it. I hope this will improve Elisabet and reduce all those headaches and other problems she has encountered. Sophia > , Elaine, , Sophia, Rita, Cy, , Betsy, and sorry if I > missed anybody else, > > Thanks to each of you for responding to my post last week. I was > feeling so frustrated and worn down. It was really comforting to > know you all understand. I appreciated all of your replies. Sorry > it's taken me this long to respond. I was waiting to see Elisabet's > neph, so I would know where things stand. > > As of yesterday's visit, he is weaning her off pred, with a 10 week > taper down. I was surprised it would be so " fast " . He told us twice > before that the wean would take 6-12 months. When I asked him about > it, he explained that the slow wean was only if it was working. Since > the pred. didn't reduce her protein, he said he can taper her down > quickly. Makes sense. I just didn't understand that until now. > > Elisabet is thrilled to be getting off pred. I'm convinced that it > has really contributed to her feeling so depressed and miserable. Even > with her headaches, she felt a lot better before going on pred. If > it's not working, I'm glad to have her off it. As for her ratio, even > though it's creeping up again, he said no new meds at this point. He > said he would like to increase her Diovan, but her b/p isn't high > enough. We'll do labs in 2 months and see where things are as she > weans off the pred. She starts yet a new headache medicine this week, > so we'll see if things improve on that front. > > Thanks for the encouragement, > B, Elisabet's mom Quote Link to comment Share on other sites More sharing options...
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