Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Well there certainly is hope for him Suzanne. I had 2/3 of my glomeruli with " extensive glomerulosclerosis " when I had my biopsy, and I'm still kicking years later. I do think the most important aspect of treatment for this is good blood pressure control that is consistent. I'm very interested in what his nephrologist will say to the tonsillectomy idea. Let us know what the " verdict " is. And good luck. Pierre Re: tonsillectomy > Yes, > > He definitely has permanent damage....40% at least is damaged. His > doctor figures he has had if for quite some time. His doctor has him > on the predinsone treatments in hopes of slowing down the > progression...but we know it is pretty experimental and who knows if > it will actually help him. As for the tonsillectomy....that would > only be a measure to possibly slow down further deterioration...and > like you said there is a lot of conflicting evidence...but it will be > interesting to see what his doc says when we ask him about it. His > doctor has 4 IGAN patients on the prednisone/high dose steriod > program. I just hope we can get another 5-10 years out of those > kidneys of his. His doc told him he may have 10-15 years left before > dialysis/transplant....but who knows...... > > Suzanne > > > eGroups Sponsor > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Any product that uses the word salt is likely to be based on potassium salts. Any such product is contraindicated for people taking ACE inhibitors and also those taking an angiotensin II receptor blocker. This is because these drugs tend to elevate potassium. The potassium itself isn't harmful, except if a person has elevated serum potassium levels. Besides all of that, potassium chloride is very, very corrosive on the digestive system. Pierre Re: Re: tonsillectomy > > > > > > > I greatly value every members input into this group. I'm sure > > > > Cyndi didn't > > > > intend her statement to be degrading, although I can see how > > it > > > > could be > > > > interpreted that way. It would be best if we do not allow > > > > ourselves to get > > > > into a discussion about the value of tonsillectomies, beyond > > what > > has > > > > already been stated. We know that there are people who believe > > in > > > > them, and > > > > those who don't. We could argue endlessly about the merits of > > whatever > > > > evidence is available. Until some new clinical trial comes > > along, > > > > there is > > > > really nothing that can be said that hasn't already been said, > > at > > some > > > > point. Please refer to the message archive if necessary. The > > only > > > > thing I > > > > would add is that the adjective " desperate " can be applied to > > > > newlie-diagnosed patients with mild IgAN as much as it can to > > > > those among us > > > > who are more advanced into the disease. > > > > Pierre > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 I would love to know how the Korean's handle this disease. We have no answers so it would be great for you to explore what they do and let us know if there are any other options besides fish oil. Best of Luck!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Interestingly, there is some debate going on right now in the mysterious world of nephrology as to whether proteinuria is the right indicator to use when doing a clinical trial to assess the efficacy of a treatment on renal disease. This debate is in the context of ACE inhibitors at the moment, but it would apply to any other treatment as well. The question is, does the fact that something reduces proteinuria a bit have any effect on the long term outcome of a disease like IgA nephropathy. Unfortunately, there is no answer to that at present. Experts have until now only been assuming that lowering proteinuria equates with a better outcome. As far as I can tell, one problem with the tonsillectomy studies from Japan is that they appear to be observational trials and not matched against completely untreated controls. Of course, I imagine it would be pretty hard to do a controlled, double-blind clinical trial on something like a tonsillectomy, since you can't give a placebo tonsillectomy. Other studies combine so many treatments at the same time, that's it is almost impossible to sort out what does what. This is just like when you are first diagnosed with IgAN and you walk out of the nephrologist's office with a prescription for an ACE inhibitor, AND instructions to start taking 12 grams of fish oil per day and perhaps a steroid or other immunosuppressant, AND you get your ENT to schedule a tonsillectomy. Next set of labs, if there is any improvement, you can't know what is responsible for it, so you have to continue everything indefinitely, even though some of the treatments might be useless for your particular case. Also, I have to wonder how would any of those results match up against a treatment group that took only an ACE inhibitor plus whatever other BP med needed to control the blood pressure down to 120/80? So far, double-blind controlled clinical trials testing ACE inhibitors and angiotensin II receptor blockers have shown pretty good results. Not trying to be critical, just bringing up some questions and/or observations. Pierre Re: tonsillectomy Of course...I hadn't even read Marty's post yet...I suspect anyone with any serious disease is desperate...We all want to squeeze out as many "quality" days as possible...I find this disease degrading because "I" want to assign blame, and be grumpy but I can'tIf any studies of import come out I hope whomever will send me an email...guerrerocyndi@...> > Cyndi said: > > > > I think some of the people that ended up on dialysis waited till > too late in the game. They were desperate people trying anything. > > > > > > > > Previously, I had said: Also, I tried the tonsillectomy quite late > in the game.> > > > Cyndi, for your information, I was not a desperate person trying > anything. I was unaware of the news about tonsillectomies possibly > being beneficial until about 6 months before having the tonsillectomy > performed. Working full time and being very busy it took me about six > months to get the surgery arranged. > > > > One should be careful about generalizing about people and comments > like yours above can sound degrading to people on the list (such as > myself) who are just trying to help other IgAN sufferers.> > > > Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 I want to agree with all that Pierre has to say. Mark, it's going to be ok, your wife is going to be around along time. I was diagnosed May 22, and have so far been able to lower my protein by diet (at least that's what I contribute it too!). I have gone from 3950 to 2434 in just 2 weeks. Hopefully when I go back in September, it will have come down even more. My neph. has had me cut back on my red meat consumption, and I now eat alot of chicken and fish. You two might talk to her neph. and she if that is an option. I am lucky that the high protein is all that I am experiencing, all other levels are normal. Good luck, and both of you need to keep adding to that retirement fund......you'll need it when you take her on that second honeymoon in 30 or so years! Think positive thoughts Nowlin payroll department - Tyson Foods, Inc. 2201 W. 2nd. Street Pine Bluff, AR 71601 - fax lisa.a.nowlin@... solocam@... > Re: Re: tonsillectomy > > Welcome to the group Mark. Even though there isn't that much known about > this disease, compared to many other diseases, it certainly is easy to > become overwhelmed by information when we look for it, isn't it? > > Any effect from fish oil is over a long term, so I don't think it would > make > any difference if you waited until you and your wife can see the > nephrologist. I only say this because in some rare cases, where a person > has > very high blood pressure, fish oil has been known to make it worse (even > though many sources say fish oil can lower blood pressure). Also, some > doctors might say exercise in order to reduce blood pressure isn't > advisable > until the high blood pressure is actually under control. It depends on how > high it is to begin with. If you can monitor her blood pressure with an > electronic BP machine, it might help to reassure you. So, I'm not saying > not > to do any of those things, but only to proceed with some caution until you > can discuss it with the nephrologist. IgA nephropathy really won't do very > much over a period of a few days or even weeks. > > 4 grams of protein in 24 hours is on the high side, to be sure, but it's > not > necessarily an indication of the stage of IgAN. Creatinine clearance is > the > real indicator. Some people have acute episodes where proteinuria is high > like that, and then it goes back down to a more reasonable level. Perhaps > your wife's situation is not as bad as it sounds now. > > I do have a word of warning for you though. When you mention that you have > bought " salt-free " salt, hopefully it's not one that is based on potassium > chloride. Check the label. If it is, this isn't a good thing to use when a > person has kidney disease (and especially if a person is taking an ACE > inhibitor). > > Yes, probably all of us have been through the initial shock, except > perhaps > people like me who had only very, very mild symptoms from the beginning. > But, I'm betting that you and Soonyoung will still be able to have a long, > long life together. > > Good luck. > Pierre > > > Re: Re: tonsillectomy > > > > > I greatly value every members input into this group. I'm sure > > > Cyndi didn't > > > intend her statement to be degrading, although I can see how it > > > could be > > > interpreted that way. It would be best if we do not allow > > > ourselves to get > > > into a discussion about the value of tonsillectomies, beyond what has > > > already been stated. We know that there are people who believe in > > > them, and > > > those who don't. We could argue endlessly about the merits of whatever > > > evidence is available. Until some new clinical trial comes along, > > > there is > > > really nothing that can be said that hasn't already been said, at some > > > point. Please refer to the message archive if necessary. The only > > > thing I > > > would add is that the adjective " desperate " can be applied to > > > newlie-diagnosed patients with mild IgAN as much as it can to > > > those among us > > > who are more advanced into the disease. > > > Pierre > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 My blood pressure is normally on the low side anyway. I have an underactive thyroid, and after being put on medication it has brought it up to the more normal range, usually around 110 to 115 over 70. I too tried counting protein grams, and thought I would starve to death! I thought I should keep it around 30 a day, and that is nearly impossible. I guess each neph. will go a different route. I walk 2 miles a day which helps when my legs start to swell just a bit. My doc. wants me to get up every 2 hours and walk for about 10 minutes, but on really hectic days it is hard for me to do that. Right now the doctor says to just cut back on the red meat and salt, which I am doing. Are you in the States or in Korea? Nowlin payroll department - Tyson Foods, Inc. 2201 W. 2nd. Street Pine Bluff, AR 71601 - fax lisa.a.nowlin@... solocam@... > Re: Re: tonsillectomy > > > > Welcome to the group Mark. Even though there isn't that much known > about > > this disease, compared to many other diseases, it certainly is easy to > > become overwhelmed by information when we look for it, isn't it? > > > > Any effect from fish oil is over a long term, so I don't think it > would > > make > > any difference if you waited until you and your wife can see the > > nephrologist. I only say this because in some rare cases, where a > person > > has > > very high blood pressure, fish oil has been known to make it worse > (even > > though many sources say fish oil can lower blood pressure). Also, some > > doctors might say exercise in order to reduce blood pressure isn't > > advisable > > until the high blood pressure is actually under control. It depends on > how > > high it is to begin with. If you can monitor her blood pressure with > an > > electronic BP machine, it might help to reassure you. So, I'm not > saying > > not > > to do any of those things, but only to proceed with some caution until > you > > can discuss it with the nephrologist. IgA nephropathy really won't do > very > > much over a period of a few days or even weeks. > > > > 4 grams of protein in 24 hours is on the high side, to be sure, but > it's > > not > > necessarily an indication of the stage of IgAN. Creatinine clearance > is > > the > > real indicator. Some people have acute episodes where proteinuria is > high > > like that, and then it goes back down to a more reasonable level. > Perhaps > > your wife's situation is not as bad as it sounds now. > > > > I do have a word of warning for you though. When you mention that you > have > > bought " salt-free " salt, hopefully it's not one that is based on > potassium > > chloride. Check the label. If it is, this isn't a good thing to use > when a > > person has kidney disease (and especially if a person is taking an ACE > > inhibitor). > > > > Yes, probably all of us have been through the initial shock, except > > perhaps > > people like me who had only very, very mild symptoms from the > beginning. > > But, I'm betting that you and Soonyoung will still be able to have a > long, > > long life together. > > > > Good luck. > > Pierre > > > > > > Re: Re: tonsillectomy > > > > > > > I greatly value every members input into this group. I'm sure > > > > Cyndi didn't > > > > intend her statement to be degrading, although I can see how it > > > > could be > > > > interpreted that way. It would be best if we do not allow > > > > ourselves to get > > > > into a discussion about the value of tonsillectomies, beyond what > has > > > > already been stated. We know that there are people who believe in > > > > them, and > > > > those who don't. We could argue endlessly about the merits of > whatever > > > > evidence is available. Until some new clinical trial comes along, > > > > there is > > > > really nothing that can be said that hasn't already been said, at > some > > > > point. Please refer to the message archive if necessary. The only > > > > thing I > > > > would add is that the adjective " desperate " can be applied to > > > > newlie-diagnosed patients with mild IgAN as much as it can to > > > > those among us > > > > who are more advanced into the disease. > > > > Pierre > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 , Thank you for the reassuring words. My is Korean. It is hard to adjust her diet. A lot of her side dishes are laced with salt - that is why we where concerned about that in light of her high blood pressure. We have cut out the " red meat " but I thought chicken and fish had protein as well? Her Neph. said to keep her protein intake at 60g or less. Korean foods do not come with labeling like our preprocessed American foods. But even on the American foods she does consume I see protein in every thing. Some items have just single digit amounts but if 60g is the max that adds up quickly. You say all your other tests are with in normal range - what about your BP? Mark Re: Re: tonsillectomy > > Welcome to the group Mark. Even though there isn't that much known about > this disease, compared to many other diseases, it certainly is easy to > become overwhelmed by information when we look for it, isn't it? > > Any effect from fish oil is over a long term, so I don't think it would > make > any difference if you waited until you and your wife can see the > nephrologist. I only say this because in some rare cases, where a person > has > very high blood pressure, fish oil has been known to make it worse (even > though many sources say fish oil can lower blood pressure). Also, some > doctors might say exercise in order to reduce blood pressure isn't > advisable > until the high blood pressure is actually under control. It depends on how > high it is to begin with. If you can monitor her blood pressure with an > electronic BP machine, it might help to reassure you. So, I'm not saying > not > to do any of those things, but only to proceed with some caution until you > can discuss it with the nephrologist. IgA nephropathy really won't do very > much over a period of a few days or even weeks. > > 4 grams of protein in 24 hours is on the high side, to be sure, but it's > not > necessarily an indication of the stage of IgAN. Creatinine clearance is > the > real indicator. Some people have acute episodes where proteinuria is high > like that, and then it goes back down to a more reasonable level. Perhaps > your wife's situation is not as bad as it sounds now. > > I do have a word of warning for you though. When you mention that you have > bought " salt-free " salt, hopefully it's not one that is based on potassium > chloride. Check the label. If it is, this isn't a good thing to use when a > person has kidney disease (and especially if a person is taking an ACE > inhibitor). > > Yes, probably all of us have been through the initial shock, except > perhaps > people like me who had only very, very mild symptoms from the beginning. > But, I'm betting that you and Soonyoung will still be able to have a long, > long life together. > > Good luck. > Pierre > > > Re: Re: tonsillectomy > > > > > I greatly value every members input into this group. I'm sure > > > Cyndi didn't > > > intend her statement to be degrading, although I can see how it > > > could be > > > interpreted that way. It would be best if we do not allow > > > ourselves to get > > > into a discussion about the value of tonsillectomies, beyond what has > > > already been stated. We know that there are people who believe in > > > them, and > > > those who don't. We could argue endlessly about the merits of whatever > > > evidence is available. Until some new clinical trial comes along, > > > there is > > > really nothing that can be said that hasn't already been said, at some > > > point. Please refer to the message archive if necessary. The only > > > thing I > > > would add is that the adjective " desperate " can be applied to > > > newlie-diagnosed patients with mild IgAN as much as it can to > > > those among us > > > who are more advanced into the disease. > > > Pierre > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 We have not lived in Korea for a long time. After I retired from Army in 96 we have lived in Manassas, VA. Out of 22 years we have only lived in Korea a total 4 years. It would be interesting to find a Korean Neph. to see what they are doing for treatment. Our Neph. appears to be Indian (from India) and was very aware of IgA. Claimed it was rare but Orientals have a higher incident rate. Not sure if he was just saying that are if there are figures to back that up. Re: Re: tonsillectomy > > > > Welcome to the group Mark. Even though there isn't that much known > about > > this disease, compared to many other diseases, it certainly is easy to > > become overwhelmed by information when we look for it, isn't it? > > > > Any effect from fish oil is over a long term, so I don't think it > would > > make > > any difference if you waited until you and your wife can see the > > nephrologist. I only say this because in some rare cases, where a > person > > has > > very high blood pressure, fish oil has been known to make it worse > (even > > though many sources say fish oil can lower blood pressure). Also, some > > doctors might say exercise in order to reduce blood pressure isn't > > advisable > > until the high blood pressure is actually under control. It depends on > how > > high it is to begin with. If you can monitor her blood pressure with > an > > electronic BP machine, it might help to reassure you. So, I'm not > saying > > not > > to do any of those things, but only to proceed with some caution until > you > > can discuss it with the nephrologist. IgA nephropathy really won't do > very > > much over a period of a few days or even weeks. > > > > 4 grams of protein in 24 hours is on the high side, to be sure, but > it's > > not > > necessarily an indication of the stage of IgAN. Creatinine clearance > is > > the > > real indicator. Some people have acute episodes where proteinuria is > high > > like that, and then it goes back down to a more reasonable level. > Perhaps > > your wife's situation is not as bad as it sounds now. > > > > I do have a word of warning for you though. When you mention that you > have > > bought " salt-free " salt, hopefully it's not one that is based on > potassium > > chloride. Check the label. If it is, this isn't a good thing to use > when a > > person has kidney disease (and especially if a person is taking an ACE > > inhibitor). > > > > Yes, probably all of us have been through the initial shock, except > > perhaps > > people like me who had only very, very mild symptoms from the > beginning. > > But, I'm betting that you and Soonyoung will still be able to have a > long, > > long life together. > > > > Good luck. > > Pierre > > > > > > Re: Re: tonsillectomy > > > > > > > I greatly value every members input into this group. I'm sure > > > > Cyndi didn't > > > > intend her statement to be degrading, although I can see how it > > > > could be > > > > interpreted that way. It would be best if we do not allow > > > > ourselves to get > > > > into a discussion about the value of tonsillectomies, beyond what > has > > > > already been stated. We know that there are people who believe in > > > > them, and > > > > those who don't. We could argue endlessly about the merits of > whatever > > > > evidence is available. Until some new clinical trial comes along, > > > > there is > > > > really nothing that can be said that hasn't already been said, at > some > > > > point. Please refer to the message archive if necessary. The only > > > > thing I > > > > would add is that the adjective " desperate " can be applied to > > > > newlie-diagnosed patients with mild IgAN as much as it can to > > > > those among us > > > > who are more advanced into the disease. > > > > Pierre > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 My neph. is from Pakistan, and I am very pleased with him. He has a nice " bedside " manner, explains everything and is very understanding. When I first showed signs of blood in my urine 2 years ago my cardiologist (besides being blessed with the rare kidney disease, I also have an extremely rare heart condition called Epstien's anomaly!)sent me to the neph. because he felt there was some sort of kidney problem. Everything looked normal and the neph. thought the blood was perhaps from the underactive thyroid. After beginning medication, blood disappeared, but the neph. said some of the bloodwork/urine work showed signs that I might develop lupus. I was told to come back in a year and see him, he wanted to monitor me. I didn't understand, I guess, how serious lupus could be and didn't come back. This May (2 years later) I got home from work to find a personal message on the answering machine from the doctor wanting to know where was I and why had I not come to see him. To make a long story short, after a 24 hour urine sample and finding my protein is 3950 he says I have 2 options, get a biopsy or go about my merry way and end up on dialysis some day. Talk about scared. I cried like a baby, got the biopsy scheduled and cried some more....I have never even had stitches and was scared of the biopsy. With a good heart to heart with the doctor and plenty of assurances that it was nothing to it, the biopsy took all of 12 minutes. And he was very relieved to find out that it wasn't lupas at all but IGA. His words were " this is much better, you are going to be fine. " I know that there is no cure for IGA, and when I went back for a check-up a few days later, was again reading about this stuff off the net and scared to death, he told me that this " disease " ( I hate to use the word, as I don't feel sick!), is something that, as far as can be seen, progresses at a very slow rate. So, right now, I am working on diet only to see if that will help, praying I don't have to go on Predisone, or any other steroid and end up blowing up like a balloon( plus any effect it might have on the ole ticker), and keeping a positive attitude. I haven't stopped any of my activities, watch what I eat and walk! Now, after my check up, I may end up having a pity party and you guys may need to cheer me up, but right now, I am on top of the world. It will be OK Mark, it really will! Nowlin payroll department - Tyson Foods, Inc. 2201 W. 2nd. Street Pine Bluff, AR 71601 - fax lisa.a.nowlin@... solocam@... > Re: Re: tonsillectomy > > > > > > Welcome to the group Mark. Even though there isn't that much known > > about > > > this disease, compared to many other diseases, it certainly is easy > to > > > become overwhelmed by information when we look for it, isn't it? > > > > > > Any effect from fish oil is over a long term, so I don't think it > > would > > > make > > > any difference if you waited until you and your wife can see the > > > nephrologist. I only say this because in some rare cases, where a > > person > > > has > > > very high blood pressure, fish oil has been known to make it worse > > (even > > > though many sources say fish oil can lower blood pressure). Also, > some > > > doctors might say exercise in order to reduce blood pressure isn't > > > advisable > > > until the high blood pressure is actually under control. It depends > on > > how > > > high it is to begin with. If you can monitor her blood pressure with > > an > > > electronic BP machine, it might help to reassure you. So, I'm not > > saying > > > not > > > to do any of those things, but only to proceed with some caution > until > > you > > > can discuss it with the nephrologist. IgA nephropathy really won't > do > > very > > > much over a period of a few days or even weeks. > > > > > > 4 grams of protein in 24 hours is on the high side, to be sure, but > > it's > > > not > > > necessarily an indication of the stage of IgAN. Creatinine clearance > > is > > > the > > > real indicator. Some people have acute episodes where proteinuria is > > high > > > like that, and then it goes back down to a more reasonable level. > > Perhaps > > > your wife's situation is not as bad as it sounds now. > > > > > > I do have a word of warning for you though. When you mention that > you > > have > > > bought " salt-free " salt, hopefully it's not one that is based on > > potassium > > > chloride. Check the label. If it is, this isn't a good thing to use > > when a > > > person has kidney disease (and especially if a person is taking an > ACE > > > inhibitor). > > > > > > Yes, probably all of us have been through the initial shock, except > > > perhaps > > > people like me who had only very, very mild symptoms from the > > beginning. > > > But, I'm betting that you and Soonyoung will still be able to have a > > long, > > > long life together. > > > > > > Good luck. > > > Pierre > > > > > > > > > Re: Re: tonsillectomy > > > > > > > > > I greatly value every members input into this group. I'm sure > > > > > Cyndi didn't > > > > > intend her statement to be degrading, although I can see how it > > > > > could be > > > > > interpreted that way. It would be best if we do not allow > > > > > ourselves to get > > > > > into a discussion about the value of tonsillectomies, beyond > what > > has > > > > > already been stated. We know that there are people who believe > in > > > > > them, and > > > > > those who don't. We could argue endlessly about the merits of > > whatever > > > > > evidence is available. Until some new clinical trial comes > along, > > > > > there is > > > > > really nothing that can be said that hasn't already been said, > at > > some > > > > > point. Please refer to the message archive if necessary. The > only > > > > > thing I > > > > > would add is that the adjective " desperate " can be applied to > > > > > newlie-diagnosed patients with mild IgAN as much as it can to > > > > > those among us > > > > > who are more advanced into the disease. > > > > > Pierre > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 My partner falls into the category of people who get this disease fairly young and for whom it has severe repercussions. His kidneys failed 12 years after he was diagnosed. He was on dialysis for a few years and has had a transplant for close to seven years now. Last week, as some of you might remember, he had a biopsy to see if he was rejecting the transplant or if the IgA has returned. The hospital staff told us that if it was rejection we'd have results by now so I'm thinking his symptoms probably come from a recurrence of the IgA. (although I'm still holding out a slim hope that it's nothing at all) Like so many of you I've been looking into every possibile way to slow it down if it is IgA. He has closed his eyes to it for the most part but he does take my suggestions into account and discusses the options with his nephrologist. So far we've been told: 1.) Fishoil won't help transplanted organs. 2.) Tonsillectomies seem to have an effect on specific cases caught in childhood but the chances of tonsillectomy helping an adult are remote. 3.) Sensible exercise is always good. 4.) Salt, in any quantity, is always bad. This one is the hardest to live by, there is salt in everything. Eating out is practically impossible. He's even been told to avoid celery since it is a high salt vegetable. (salt is what makes celery crunchy -- who knew?) 5.) Restricting protein beyond the dictates of the Canada food guide seems to have very little effect. 6.) There seems to be a genetic connection. 7.) There's a variation of IgA that is caused by Strep throat in childhood. It doesn't lead to organ failure except in very rare cases. Usually, kids get over it. From my own observations and reading I think there has to be some connection to the processing of something that comes in through the mouth and nose. Too many people with IgA seem to have similar brushes with sore throat, digestive upsets, gall bladder and allergies. What connects all of those things to blood pressure and kidney function? Is there an acid that is common to the functions of all those organs? A microbe? An electrolyte? A specific histamine? Is a surplus of that substance produced by IgA sufferers? Why do some people get over this and others progress to kidney failure? From what my doctor tells me, blood pressure is a pretty simple thing too much fluid in the bloodstream makes it rise and stress makes the channels smaller so that even a normal amount of fluid in the system has difficulty travelling through its usual channels. What is out of balance in J's bloodstream? 1 gram of protein can't push it that far out of whack. Maybe there's a gene in some people that reacts with a normal chemical to alter that chemical or send it into overproduction when a specific set of circumstances are present? There seems to be a pattern in this somewhere, I lack the skills to figure out what it is but somebody out there must be close to an answer. I think it's a good idea to try to minimize the symptoms with exercise, diet and stress reduction as sensibly as possible and to keep reading everything that becomes available. We don't think about shortened life span because we don't want to create self-fulfilling prophecies. There is not one creature alive who can tell you how long they will live. Not a plant, an animal or a human, we don't have control over things like that. I've had friends who died unexpectedly in their 20's and friends and family who have defied all their doctors predictions and lived well into their 80's. I find it helps me to remind myself of that simple fact. IgA is a complication -- just that, nothing more. At our house we don't give it any more power than it needs to have. His parents -- well, that's another story. Maybe it's easier for him to live with this since it's been with him for most of his life, they seem to see every part of it as a crisis and I'm not sure I blame them, after all, it must have been quite a shock when he was diagnosed. Their stress is one of the toughest things we have to manage. It causes a lot of struggling between us and a lot of anxiety for each of us as individuals. Nevertheless I think it's important for family members to try and stay as level headed as possible. Stress can have a measurable affect on blood pressure and confidence has shown up as a positive influence in more than one study. Sure, we all try to play the odds as best we can but in the end,life is a temporary condition for everybody. Just because J. has IgA doesn't mean he's any more doomed than anybody else. PS. I don't mind being referred to as desperate, I'm the first to admit it, I've been depserate -- there are days when I'd do anything to be able to make a difference in this disease but my panic is not constructive so I try to keep it under wraps. I try to get all the information a desperate person would want to have, (especially when he's been in hospital I've charted blood pressure, temperature and urine output just in case) -- but I act as though I'm completely convinced that everything is going to be just fine no matter what is going on around me. No worries. Worries don't help. _______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Not only is potassium potentially a problem for those on ACE inhibitors, it can be a serious problem for people who are close to end-stage. The kidneys no longer filter potassium as effectively as they do in people with normal kidney function. Levels of serum potassium that are too high can be life-threatening because it affects the function of your muscles, including the heart. Symptoms of high potassium (hyperkalemia) include tingling of the extremeties and weakness of the legs. I experienced this first-hand when I was predialysis. Predialysis patients nearing end-stage should consult with a renal dietician. Foods high in potassium should be avoided, including certain dark leafy vegetables, avacodoes, tomato products (sauces and pastes, especially), oranges and orange juice, raisins, dried fruit, bananas, the list goes on and on. Marty Re: Re: tonsillectomy> > >> > > > I greatly value every members input into this group. I'm sure> > > > Cyndi didn't> > > > intend her statement to be degrading, although I can see how> > it> > > > could be> > > > interpreted that way. It would be best if we do not allow> > > > ourselves to get> > > > into a discussion about the value of tonsillectomies, beyond> > what> > has> > > > already been stated. We know that there are people who believe> > in> > > > them, and> > > > those who don't. We could argue endlessly about the merits of> > whatever> > > > evidence is available. Until some new clinical trial comes> > along,> > > > there is> > > > really nothing that can be said that hasn't already been said,> > at> > some> > > > point. Please refer to the message archive if necessary. The> > only> > > > thing I> > > > would add is that the adjective "desperate" can be applied to> > > > newlie-diagnosed patients with mild IgAN as much as it can to> > > > those among us> > > > who are more advanced into the disease.> > > > Pierre> > > >> > > >> > > >> > > > Quote Link to comment Share on other sites More sharing options...
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