Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Hello Well no at the moment I have not done any real dialysis training the neph says that I am tolerating this low level of function quite well they discussed the different options with me and it looks like I will go on the overnight APD machine when it finally happens. I have definately seen the renal dietician , but then again I do weigh in at over 22 stones () It was a useful meeting though they obviously went through all the High Potassium and Phosphate foods Coke Potatoes Fruits Fruit Juices Banannas Dried Fruit Coffee etc etc etc they did not mention anything to me about a low protein Diet but some people do say that this does help to keep function longer my one problem at the moment is the anemia caused by poor function. The neph said I might have to permanently go on the E P O Injections which I really did not like the sound of (Me = Coward) but luckily they said they would first try me on a course of four Iron injections directly into the vein/bloodstream, well I had this done over a period of 2 weeks and it seemed to do the trick, so no more EPO which was a relief Another Interesting thing is the use of MAXEPA fish oil tablets because no one ever even mentioned it to me when I went for my regular monthly checkups, but by checking out this forum and associated USA websites I discovered that it is fairly common in the US for Fish Oil to be PRESCRIBED for IGA patients. perhaps they keep quiet about it because it would cost too much to give it to every UK kidney patient. I got my GP to send a letter to the Consultant Neph about this and now I am on 2 MAXEPA per day, don't know if it helps but it sure can't hurt at this low dose The research into Fish Oil is not proven at all and it seems to work best in the very early stages of the disease, so I might be a bit late using it but like I said to the Consultant it is like clutching at straws, i would try anything to slow the progression and maybe give myself a bit more time. One thing that is not very good at the Royal London is that every time I go for a checkup I seem to get a different Neph No Continuity but they all seem pretty OK He He It is funny what you said about comparing the rules in the UK, really funny because it seems to me that the rules are not just different between USA and UK but they are different between London and Birmingham and from Neph to Neph Doc to Doc and Con to Con Doh !!!!!! the general rules of treatment for our stage of the disease are pretty constant IE LOW POTASSIUM CONTROLLED PHOSPHATE AND KEEP HIS BLOOD PRESSURE UNDER CONTROL <130/80 but it kind of seems that everyone has his own ideas about the details drugs etc etc etc etc as of now I think I have been diagnosed for over eight years and slowly declining during that time Sorry it took me a while to reply thanks for the reply and all the best of luck to you Cheers from Danny D johnfurness2001 wrote:Hi Danny You mentioned that your cr. is about 410 at present, have you received any dialysis training yet or are you on any renal diet? I am from the outskirts of Birmingham, at roughly the same level as you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal dietician yet, just wondering if this is the UK norm or wether its the hospital that I attend. Thanks for your reply, its unfortunate, but nice to hear from someone else from the UK, as the rules should be similar. Regards To change your settings for the group, or to leave the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 I may be a bit on the slow side - but what does a stone actually convert into? Hi Danny > You mentioned that your cr. is about 410 at present, have you > received any dialysis training yet or are you on any renal diet? > > I am from the outskirts of Birmingham, at roughly the same level as > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > dietician yet, just wondering if this is the UK norm or wether its > the hospital that I attend. > Thanks for your reply, its unfortunate, but nice to hear from someone > else from the UK, as the rules should be similar. > Regards > > > > > To change your settings for the group, > or to leave the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Ingrid, Glad you asked...I actually laughed out loud, because I don't have the faintest clue at to what a stone means in volume/weight. , don't you dare start in... it sure sounds like slang to me (us, that is Ingrid and me) )Connie, USA Re: For Furness I may be a bit on the slow side - but what does a stone actually convert into? Hi Danny > You mentioned that your cr. is about 410 at present, have you > received any dialysis training yet or are you on any renal diet? > > I am from the outskirts of Birmingham, at roughly the same level as > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > dietician yet, just wondering if this is the UK norm or wether its > the hospital that I attend. > Thanks for your reply, its unfortunate, but nice to hear from someone > else from the UK, as the rules should be similar. > Regards > > > > > To change your settings for the group, > or to leave the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Don't look at me. Canadians don't know what a " stone " is either : ) Pierre Re: For Furness > > > I may be a bit on the slow side - but what does a stone actually > convert into? > > Hi Danny > > You mentioned that your cr. is about 410 at present, have you > > received any dialysis training yet or are you on any renal diet? > > > > I am from the outskirts of Birmingham, at roughly the same level as > > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > > dietician yet, just wondering if this is the UK norm or wether its > > the hospital that I attend. > > Thanks for your reply, its unfortunate, but nice to hear from > someone > > else from the UK, as the rules should be similar. > > Regards > > > > > > > > > > To change your settings for the group, > > or to leave the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 14 pounds to be precise? Or have I completely missed the boat! Re: For Furness Don't look at me. Canadians don't know what a " stone " is either : ) Pierre Re: For Furness > > > I may be a bit on the slow side - but what does a stone actually > convert into? > > Hi Danny > > You mentioned that your cr. is about 410 at present, have you > > received any dialysis training yet or are you on any renal diet? > > > > I am from the outskirts of Birmingham, at roughly the same level as > > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > > dietician yet, just wondering if this is the UK norm or wether its > > the hospital that I attend. > > Thanks for your reply, its unfortunate, but nice to hear from > someone > > else from the UK, as the rules should be similar. > > Regards > > > > > > > > > > To change your settings for the group, > > or to leave the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Thank you - for not laughing as one OTHER did! Ingrid Hi Danny > > > You mentioned that your cr. is about 410 at present, have you > > > received any dialysis training yet or are you on any renal diet? > > > > > > I am from the outskirts of Birmingham, at roughly the same level as > > > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > > > dietician yet, just wondering if this is the UK norm or wether its > > > the hospital that I attend. > > > Thanks for your reply, its unfortunate, but nice to hear from > > someone > > > else from the UK, as the rules should be similar. > > > Regards > > > > > > > > > > > > > > > To change your settings for the group, > > > or to leave the group, go to our Yahoo Group > > > home page: > > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 That my friends is the international lesson for today! Connie, USA Re: For Furness Thank you - for not laughing as one OTHER did! Ingrid Hi Danny > > > You mentioned that your cr. is about 410 at present, have you > > > received any dialysis training yet or are you on any renal diet? > > > > > > I am from the outskirts of Birmingham, at roughly the same level as > > > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > > > dietician yet, just wondering if this is the UK norm or wether its > > > the hospital that I attend. > > > Thanks for your reply, its unfortunate, but nice to hear from > > someone > > > else from the UK, as the rules should be similar. > > > Regards > > > > > > > > > > > > > > > To change your settings for the group, > > > or to leave the group, go to our Yahoo Group > > > home page: > > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 Come on Connie everyone knows its a large pebble or roughly 6 kilos! ;-) Re: For Furness > > > I may be a bit on the slow side - but what does a stone actually > convert into? > > Hi Danny > > You mentioned that your cr. is about 410 at present, have you > > received any dialysis training yet or are you on any renal diet? > > > > I am from the outskirts of Birmingham, at roughly the same level as > > you. I am 6'5 " and weigh 16.5 st, but have not been seen by a renal > > dietician yet, just wondering if this is the UK norm or wether its > > the hospital that I attend. > > Thanks for your reply, its unfortunate, but nice to hear from > someone > > else from the UK, as the rules should be similar. > > Regards > > > > > > > > > > To change your settings for the group, > > or to leave the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > Quote Link to comment Share on other sites More sharing options...
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