Guest guest Posted November 3, 2004 Report Share Posted November 3, 2004 Hi , I am SO sorry that I have offended you. I simply did not see any earlier email asking about diet. I try to read each and every single email and I try very very hard to make sure every single email gets someone to respond to it. Sometimes Yahoo misses an email for some reason and it is not forwarded to me. Please always know if you did not get a response, it is either that I am on business travel and only have access to email in the evening that day, or I simply missed it. I can promise you I do not ever ever intentionally not respond to any email. Please accept my deepest apologies. I do work full time still, travel about 30% of the time and am extremely tired often now that my function is down to 18%, but I say this not to excuse missing an email, but to ask for patience if it takes me a little longer to respond some days. In this case, I did not see an email asking about diet at all, so it was not even a case where I was too tired or away. I apologize again for offending you. To answer your question about diet though, it really all depends on your individual lab results. A low protein diet is pretty standard, but beyond that, the restrictions are given according to your lab results. For example, for about 15 years I was only restricted on protein. Then about 5 years ago I started having problems with my potassium levels running very high, sometimes extremely high to where I got called to report to the ER so now I am on potassium restriction which means many fruits and veggies such as bananas, oranges, potatoes, broccoli, spinach, tomatoes and I could go on and on are limited. More recently in the last year of two, my phosphorus levels have been climbing so I have to watch high phosphorus foods such as nuts and dairy products as well as avoiding colas. I am sorry I can't be more specific, but without knowing all your lab results it is hard to know what you should limit in your diet. It would be a good idea to ask your Neph, and if restrictions are recommended, I found it very helpful to consult a renal dietitian. One caution is to never change your diet without first consulting with your Nephrologist first. Does this help? Please let me know if I ever miss another email. I promise to try very hard not to :-) In a message dated 11/3/2004 9:45:18 PM Eastern Standard Time, Hallam writes: > > >Hi , >If you won't respond to any of my email questions, Why keep me on your igan chat line? >ly I am finding this very undemocratic, and communist, in as much as I joined for some kind of feed-back, to my questions. >Maybe you did not recieve my email on what diet is appropriate for igan >patients? If this is the case, I appologise for the above criticism. >Awaiting your response. > >W4JC@... wrote: >Hi Connie and Ralph, > >Here is the link for the GRF calculator. Remember to put his weight in kg, >not pounds. > >http://nephron.com/mdrd/default.html > >This one is the inverse creatinine plotting tool which you can also use. > > >http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.htm > >l > >Hope this helps. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 You are so right, Pierre, I think he needs to apologize to , the stalwart question answerer on this site, and probably the sweetest person too. W In a message dated 11/4/2004 9:25:22 AM Eastern Standard Time, pgl-groups@... writes: Let me make this perfectly clear. I can understand people not feeling well and occasionally having it cloud their judgment, but messages like 's are totally out of line, and there is no reason whatsoever for to apologize - NONE - certainly not , of all people, who is the single most devoted member of this community. We aren't a business. We are a patient support group. Sometimes, out of thousands of messages, it's quite possible that some don't get answered. If they don't, ask again. It's as simple as that. We don't guarantee an answer for anything. Nobody is " owed " a reply. We try to be a friendly place and to ensure everyone gets a reply, but, if it's just going to be a place where , Cy and myself answer questions and everyone else asks them, there won't be a group. Pierre Re: Apology from to > > Hi , > > I am SO sorry that I have offended you. I simply did not see any earlier email asking about diet. I try to read each and every single email and I try very very hard to make sure every single email gets someone to respond to it. > > Sometimes Yahoo misses an email for some reason and it is not forwarded to me. Please always know if you did not get a response, it is either that I am on business travel and only have access to email in the evening that day, or I simply missed it. I can promise you I do not ever ever intentionally not respond to any email. Please accept my deepest apologies. I do work full time still, travel about 30% of the time and am extremely tired often now that my function is down to 18%, but I say this not to excuse missing an email, but to ask for patience if it takes me a little longer to respond some days. In this case, I did not see an email asking about diet at all, so it was not even a case where I was too tired or away. I apologize again for offending you. > > To answer your question about diet though, it really all depends on your individual lab results. A low protein diet is pretty standard, but beyond that, the restrictions are given according to your lab results. For example, for about 15 years I was only restricted on protein. Then about 5 years ago I started having problems with my potassium levels running very high, sometimes extremely high to where I got called to report to the ER so now I am on potassium restriction which means many fruits and veggies such as bananas, oranges, potatoes, broccoli, spinach, tomatoes and I could go on and on are limited. More recently in the last year of two, my phosphorus levels have been climbing so I have to watch high phosphorus foods such as nuts and dairy products as well as avoiding colas. > > I am sorry I can't be more specific, but without knowing all your lab results it is hard to know what you should limit in your diet. It would be a good idea to ask your Neph, and if restrictions are recommended, I found it very helpful to consult a renal dietitian. One caution is to never change your diet without first consulting with your Nephrologist first. > > Does this help? > > Please let me know if I ever miss another email. I promise to try very hard not to :-) > > > > In a message dated 11/3/2004 9:45:18 PM Eastern Standard Time, Hallam writes: > > > > > > >Hi , > >If you won't respond to any of my email questions, Why keep me on your igan chat line? > >ly I am finding this very undemocratic, and communist, in as much as I joined for some kind of feed-back, to my questions. > >Maybe you did not recieve my email on what diet is appropriate for igan > >patients? If this is the case, I appologise for the above criticism. > >Awaiting your response. > > > >W4JC@... wrote: > >Hi Connie and Ralph, > > > >Here is the link for the GRF calculator. Remember to put his weight in kg, > >not pounds. > > > >http://nephron.com/mdrd/default.html > > > >This one is the inverse creatinine plotting tool which you can also use. > > > > > >http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index ..htm > > > >l > > > >Hope this helps. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Let me make this perfectly clear. I can understand people not feeling well and occasionally having it cloud their judgment, but messages like 's are totally out of line, and there is no reason whatsoever for to apologize - NONE - certainly not , of all people, who is the single most devoted member of this community. We aren't a business. We are a patient support group. Sometimes, out of thousands of messages, it's quite possible that some don't get answered. If they don't, ask again. It's as simple as that. We don't guarantee an answer for anything. Nobody is " owed " a reply. We try to be a friendly place and to ensure everyone gets a reply, but, if it's just going to be a place where , Cy and myself answer questions and everyone else asks them, there won't be a group. Pierre Re: Apology from to > > Hi , > > I am SO sorry that I have offended you. I simply did not see any earlier email asking about diet. I try to read each and every single email and I try very very hard to make sure every single email gets someone to respond to it. > > Sometimes Yahoo misses an email for some reason and it is not forwarded to me. Please always know if you did not get a response, it is either that I am on business travel and only have access to email in the evening that day, or I simply missed it. I can promise you I do not ever ever intentionally not respond to any email. Please accept my deepest apologies. I do work full time still, travel about 30% of the time and am extremely tired often now that my function is down to 18%, but I say this not to excuse missing an email, but to ask for patience if it takes me a little longer to respond some days. In this case, I did not see an email asking about diet at all, so it was not even a case where I was too tired or away. I apologize again for offending you. > > To answer your question about diet though, it really all depends on your individual lab results. A low protein diet is pretty standard, but beyond that, the restrictions are given according to your lab results. For example, for about 15 years I was only restricted on protein. Then about 5 years ago I started having problems with my potassium levels running very high, sometimes extremely high to where I got called to report to the ER so now I am on potassium restriction which means many fruits and veggies such as bananas, oranges, potatoes, broccoli, spinach, tomatoes and I could go on and on are limited. More recently in the last year of two, my phosphorus levels have been climbing so I have to watch high phosphorus foods such as nuts and dairy products as well as avoiding colas. > > I am sorry I can't be more specific, but without knowing all your lab results it is hard to know what you should limit in your diet. It would be a good idea to ask your Neph, and if restrictions are recommended, I found it very helpful to consult a renal dietitian. One caution is to never change your diet without first consulting with your Nephrologist first. > > Does this help? > > Please let me know if I ever miss another email. I promise to try very hard not to :-) > > > > In a message dated 11/3/2004 9:45:18 PM Eastern Standard Time, Hallam writes: > > > > > > >Hi , > >If you won't respond to any of my email questions, Why keep me on your igan chat line? > >ly I am finding this very undemocratic, and communist, in as much as I joined for some kind of feed-back, to my questions. > >Maybe you did not recieve my email on what diet is appropriate for igan > >patients? If this is the case, I appologise for the above criticism. > >Awaiting your response. > > > >W4JC@... wrote: > >Hi Connie and Ralph, > > > >Here is the link for the GRF calculator. Remember to put his weight in kg, > >not pounds. > > > >http://nephron.com/mdrd/default.html > > > >This one is the inverse creatinine plotting tool which you can also use. > > > > > >http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index ..htm > > > >l > > > >Hope this helps. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Pierre: Well said! --Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 I am very new to the group so forgive my presumption...but I receive a good thousand IGAN support group emails a month. Not so sure I see 's missing one (or for that matter, deliberately choosing not to reply to one, many, or all)email as problematic. I found the " communist, " comment frankly offensive and fundamentally inappropriate for a forum of this type. That said, I will address the underlying diet question from my perspective. I was DXd a little more than a year ago with IGAN having measured Cr clearances leading to about 22% function currently. At this point I am on a low protein, avoid pottassium, avoid phosphorous (and take TUMS when I eat) sort of diet. Giving up meats and other protein souces wasn't that hard...I simply cheat occasionally. At this point I am eating so little anyway that no one seems overly worried about anything OTHER than potassium. The penalties for violating the K rules are very severe in the form of a brown liquid that a) tastes HORRID and causes very high sample throughput instantly...rather like swallowing a bottle of Tabasco would lead to but without the burning. This throughput continues for a full day, so I am very careful surrounding bananas and the like. That said, the K foods pre-diagnosis constituted 30% of my diet, so giving them up and smiling about it has literally taken a year to manage. My food preferences have changed dramatically, even if some changes weren't mandated. Smelly foods of all kinds are now absolutely inedible, even though previously I loved cheesy gooey pasta now I just cant abide such. I now crave sweets, whereas I never did before; and interestingly things that have pleasant odors (i.e. mint) will have those odors refelected in the next days fluid output to an extent I find hard to believe. I used to love eggs and now can barely tolerate them; I used to love fish (i.e. tuna from the can) and now can't stand that. Milk is poisonous, but I still crave ice cream once in a while. ly I can literallly go for days without eating anything, though my nephrologist is very displeased with this. However, I still weigh 200 pounds (down from 270) and nutritional status is still great (as measured by blood protein profiles), so I am not that worried. I have been told the K retention is the result of the 40mg of Lisinopril I take daily and should be moderated by the just added 40 mg of Lasix per day. Hardest to give up was the diet Pepsi/diet Coke that served as my one and only caffiene source. On a related note, does anyone have a decent rememdy for the persistent itching????? My eyelids in particular (figure that one out).....Benadryl makes me sleepy and lotions are hard to manage. I still work, so the itching is becoming rather embarrasing and somewhat difficult to control... I am grateful that this community exists, and hope that we all can continue to maintain a degree of civility in the face of what really are fairly miserable circumstances for us all. cheers, Bart Re: Apology from to Hi , I am SO sorry that I have offended you. I simply did not see any earlier email asking about diet. I try to read each and every single email and I try very very hard to make sure every single email gets someone to respond to it. Sometimes Yahoo misses an email for some reason and it is not forwarded to me. Please always know if you did not get a response, it is either that I am on business travel and only have access to email in the evening that day, or I simply missed it. I can promise you I do not ever ever intentionally not respond to any email. Please accept my deepest apologies. I do work full time still, travel about 30% of the time and am extremely tired often now that my function is down to 18%, but I say this not to excuse missing an email, but to ask for patience if it takes me a little longer to respond some days. In this case, I did not see an email asking about diet at all, so it was not even a case where I was too tired or away. I apologize again for offending you. To answer your question about diet though, it really all depends on your individual lab results. A low protein diet is pretty standard, but beyond that, the restrictions are given according to your lab results. For example, for about 15 years I was only restricted on protein. Then about 5 years ago I started having problems with my potassium levels running very high, sometimes extremely high to where I got called to report to the ER so now I am on potassium restriction which means many fruits and veggies such as bananas, oranges, potatoes, broccoli, spinach, tomatoes and I could go on and on are limited. More recently in the last year of two, my phosphorus levels have been climbing so I have to watch high phosphorus foods such as nuts and dairy products as well as avoiding colas. I am sorry I can't be more specific, but without knowing all your lab results it is hard to know what you should limit in your diet. It would be a good idea to ask your Neph, and if restrictions are recommended, I found it very helpful to consult a renal dietitian. One caution is to never change your diet without first consulting with your Nephrologist first. Does this help? Please let me know if I ever miss another email. I promise to try very hard not to :-) In a message dated 11/3/2004 9:45:18 PM Eastern Standard Time, Hallam writes: > > >Hi , >If you won't respond to any of my email questions, Why keep me on your igan chat line? >ly I am finding this very undemocratic, and communist, in as much as I joined for some kind of feed-back, to my questions. >Maybe you did not recieve my email on what diet is appropriate for igan >patients? If this is the case, I appologise for the above criticism. >Awaiting your response. > >W4JC@... wrote: >Hi Connie and Ralph, > >Here is the link for the GRF calculator. Remember to put his weight in kg, >not pounds. > >http://nephron.com/mdrd/default.html > >This one is the inverse creatinine plotting tool which you can also use. > > >http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index ..htm > >l > >Hope this helps. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Not much can be done about itching as far as I know, if it's caused by the renal insufficiency, except really avoiding high phosphorus foods with a vengeance. There is one oddball antihistamine that is sometimes prescribed for occasional use. It's called Atarax. I've tried it, and it does work, although, like Benadryl, it's a little sedating (not as much as Benadryl, I found). If the itching is specifically affecting the eyes, I've just used Clear Eyes Allergy, a shelf product available in any pharmacy, and I find it helps a lot, even if the problem is not really an allergy, as such. You could always just try it. Pierre RE: Apology from to > > I am very new to the group so forgive my presumption...but I receive a good > thousand IGAN support group emails a month. > > Not so sure I see 's missing one (or for that matter, deliberately > choosing not to reply to one, many, or all)email as problematic. I found > the " communist, " comment frankly offensive and fundamentally inappropriate > for a forum of this type. > > That said, I will address the underlying diet question from my perspective. > > I was DXd a little more than a year ago with IGAN having measured Cr > clearances leading to about 22% function currently. At this point I am on a > low protein, avoid pottassium, avoid phosphorous (and take TUMS when I eat) > sort of diet. Giving up meats and other protein souces wasn't that hard...I > simply cheat occasionally. At this point I am eating so little anyway that > no one seems overly worried about anything OTHER than potassium. The > penalties for violating the K rules are very severe in the form of a brown > liquid that a) tastes HORRID and causes very high sample throughput > instantly...rather like swallowing a bottle of Tabasco would lead to but > without the burning. This throughput continues for a full day, so I am very > careful surrounding bananas and the like. That said, the K foods > pre-diagnosis constituted 30% of my diet, so giving them up and smiling > about it has literally taken a year to manage. > > My food preferences have changed dramatically, even if some changes weren't > mandated. Smelly foods of all kinds are now absolutely inedible, even > though previously I loved cheesy gooey pasta now I just cant abide such. I > now crave sweets, whereas I never did before; and interestingly things that > have pleasant odors (i.e. mint) will have those odors refelected in the next > days fluid output to an extent I find hard to believe. I used to love eggs > and now can barely tolerate them; I used to love fish (i.e. tuna from the > can) and now can't stand that. Milk is poisonous, but I still crave ice > cream once in a while. ly I can literallly go for days without eating > anything, though my nephrologist is very displeased with this. However, I > still weigh 200 pounds (down from 270) and nutritional status is still great > (as measured by blood protein profiles), so I am not that worried. > > I have been told the K retention is the result of the 40mg of Lisinopril I > take daily and should be moderated by the just added 40 mg of Lasix per day. > > Hardest to give up was the diet Pepsi/diet Coke that served as my one and > only caffiene source. > > On a related note, does anyone have a decent rememdy for the persistent > itching????? My eyelids in particular (figure that one out).....Benadryl > makes me sleepy and lotions are hard to manage. I still work, so the > itching is becoming rather embarrasing and somewhat difficult to control... > > I am grateful that this community exists, and hope that we all can continue > to maintain a degree of civility in the face of what really are fairly > miserable circumstances for us all. > > cheers, Bart > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 > >Hi Connie and Ralph, > > > >Here is the link for the GRF calculator. Remember to put his weight in kg, > >not pounds. > > > >http://nephron.com/mdrd/default.html > > > >This one is the inverse creatinine plotting tool which you can also use. > > > > > >http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools /index > .htm > > > >l > > > >Hope this helps. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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