So, who else has got it?
Sep 1st 2009, 12:25 am
#31
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Re: So, who else has got it?
actually I have the opposite problem in that I struggle to put on weight, which I need to equalise my kidney function. It's an interesting disease (IgA Nephropathy) which is still relatively new to doctors around the world. There's no cure and all sufferers can do is manage it. So i have to stick to a strict very low protein and high sugar diet. So my diet consists of everything most dieticians warn you off. I have to drink at least a few cans of soft drink a day, as many sugary sweets as I can in a day to just to maintain my weight. People at work just think I have a really bad diet and don't realise I have to eat that sh!t just to survive
Want me to make you feel better?
Sep 1st 2009, 10:11 am
#32
I'm Old Gregg!
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Sep 1st 2009, 10:17 am
#33
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Sep 1st 2009, 11:27 am
#34
I'm Old Gregg!
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Re: So, who else has got it?
They could, however it is rather futile. Testing isn't done that much in most western countries. Apparently Japan and Sth Korea test for it in kids as a rule. It seems to mostly affect males, although girls can carry the gene too.
Even if they do come back with a positive result there is not much you can do about it as it is uncurable. What happens is the gene lies dormant for most of your life, it requires a trigger for it to awaken and that more often than not is another virus. In my case I got a very mild case of the flu this time last year and it was enough to trigger the gene. The problem is that the gene has good intentions as it is there as a fighter to combat other illnesses, however once it is awoken it cannot go back to dormant phase. From there it continues to try and work hard to fight other things even if you are healthy and the main thing it fights are the kidneys and it will keep fighting it. It thrives on protein and attacks the kidneys with it slowly eating away at your kidney function until you need a transplant. So the best thing you can do is limit your protein intake, which is really difficult as it is not as simple as just cutting out meat from your diet. Most vegetarian alternatives to meat are high in protein so it is a real task to find stuff that I can eat on a daily basis.
Because it is still relatively immature as a known disease to doctors and specialists they are equally as immature in their ability to offer much in the scope of advice. All the books claim that you cannot recover from it once you have it. But my specialist says he has seen countless examples of people leading a "normal life" if they manage it correctly. My kidney function got down to a dangerous 57% last year on diagnosis. Within 6 months of managing my diet I got it up in to the 90 percentile, which is the normal healthy kidney function. So it is not all doom and gloom, it can be dealt with, unfortauntely not permanently
Even if they do come back with a positive result there is not much you can do about it as it is uncurable. What happens is the gene lies dormant for most of your life, it requires a trigger for it to awaken and that more often than not is another virus. In my case I got a very mild case of the flu this time last year and it was enough to trigger the gene. The problem is that the gene has good intentions as it is there as a fighter to combat other illnesses, however once it is awoken it cannot go back to dormant phase. From there it continues to try and work hard to fight other things even if you are healthy and the main thing it fights are the kidneys and it will keep fighting it. It thrives on protein and attacks the kidneys with it slowly eating away at your kidney function until you need a transplant. So the best thing you can do is limit your protein intake, which is really difficult as it is not as simple as just cutting out meat from your diet. Most vegetarian alternatives to meat are high in protein so it is a real task to find stuff that I can eat on a daily basis.
Because it is still relatively immature as a known disease to doctors and specialists they are equally as immature in their ability to offer much in the scope of advice. All the books claim that you cannot recover from it once you have it. But my specialist says he has seen countless examples of people leading a "normal life" if they manage it correctly. My kidney function got down to a dangerous 57% last year on diagnosis. Within 6 months of managing my diet I got it up in to the 90 percentile, which is the normal healthy kidney function. So it is not all doom and gloom, it can be dealt with, unfortauntely not permanently
Sep 1st 2009, 12:29 pm
#35
Joined: Oct 2007
Posts: 9,668
Re: So, who else has got it?
They could, however it is rather futile. Testing isn't done that much in most western countries. Apparently Japan and Sth Korea test for it in kids as a rule. It seems to mostly affect males, although girls can carry the gene too.
Even if they do come back with a positive result there is not much you can do about it as it is uncurable. What happens is the gene lies dormant for most of your life, it requires a trigger for it to awaken and that more often than not is another virus. In my case I got a very mild case of the flu this time last year and it was enough to trigger the gene. The problem is that the gene has good intentions as it is there as a fighter to combat other illnesses, however once it is awoken it cannot go back to dormant phase. From there it continues to try and work hard to fight other things even if you are healthy and the main thing it fights are the kidneys and it will keep fighting it. It thrives on protein and attacks the kidneys with it slowly eating away at your kidney function until you need a transplant. So the best thing you can do is limit your protein intake, which is really difficult as it is not as simple as just cutting out meat from your diet. Most vegetarian alternatives to meat are high in protein so it is a real task to find stuff that I can eat on a daily basis.
Because it is still relatively immature as a known disease to doctors and specialists they are equally as immature in their ability to offer much in the scope of advice. All the books claim that you cannot recover from it once you have it. But my specialist says he has seen countless examples of people leading a "normal life" if they manage it correctly. My kidney function got down to a dangerous 57% last year on diagnosis. Within 6 months of managing my diet I got it up in to the 90 percentile, which is the normal healthy kidney function. So it is not all doom and gloom, it can be dealt with, unfortauntely not permanently
Even if they do come back with a positive result there is not much you can do about it as it is uncurable. What happens is the gene lies dormant for most of your life, it requires a trigger for it to awaken and that more often than not is another virus. In my case I got a very mild case of the flu this time last year and it was enough to trigger the gene. The problem is that the gene has good intentions as it is there as a fighter to combat other illnesses, however once it is awoken it cannot go back to dormant phase. From there it continues to try and work hard to fight other things even if you are healthy and the main thing it fights are the kidneys and it will keep fighting it. It thrives on protein and attacks the kidneys with it slowly eating away at your kidney function until you need a transplant. So the best thing you can do is limit your protein intake, which is really difficult as it is not as simple as just cutting out meat from your diet. Most vegetarian alternatives to meat are high in protein so it is a real task to find stuff that I can eat on a daily basis.
Because it is still relatively immature as a known disease to doctors and specialists they are equally as immature in their ability to offer much in the scope of advice. All the books claim that you cannot recover from it once you have it. But my specialist says he has seen countless examples of people leading a "normal life" if they manage it correctly. My kidney function got down to a dangerous 57% last year on diagnosis. Within 6 months of managing my diet I got it up in to the 90 percentile, which is the normal healthy kidney function. So it is not all doom and gloom, it can be dealt with, unfortauntely not permanently
Sep 1st 2009, 2:09 pm
#36
Chan eil aon chànan gu le
Joined: Feb 2009
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Re: So, who else has got it?
Sep 1st 2009, 6:49 pm
#37
Officially Bewildered
Joined: Nov 2006
Location: Blue Mountains, NSW
Posts: 5,523
Re: So, who else has got it?
They could, however it is rather futile. Testing isn't done that much in most western countries. Apparently Japan and Sth Korea test for it in kids as a rule. It seems to mostly affect males, although girls can carry the gene too.
Even if they do come back with a positive result there is not much you can do about it as it is uncurable. What happens is the gene lies dormant for most of your life, it requires a trigger for it to awaken and that more often than not is another virus. In my case I got a very mild case of the flu this time last year and it was enough to trigger the gene.
Even if they do come back with a positive result there is not much you can do about it as it is uncurable. What happens is the gene lies dormant for most of your life, it requires a trigger for it to awaken and that more often than not is another virus. In my case I got a very mild case of the flu this time last year and it was enough to trigger the gene.
Can't be good to have that hanging over your head - I guess because there isn't much research on it, there's always the chance they'll find a way to better manage it or to cure it.I guess I asked about testing the kids for it with a view to it affecting their decision in the future about having children themselves - can't be easy for any of you.
Sep 1st 2009, 7:31 pm
#38
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Joined: Jun 2007
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Posts: 21,434
Re: So, who else has got it?
Can't be good to have that hanging over your head - I guess because there isn't much research on it, there's always the chance they'll find a way to better manage it or to cure it.I guess I asked about testing the kids for it with a view to it affecting their decision in the future about having children themselves - can't be easy for any of you.
Sep 1st 2009, 7:38 pm
#39
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Joined: Sep 2007
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Re: So, who else has got it?
Hello BS,
Son number 1 is just getting over it, hit him really bad. Temp of 39.5, hardly touched by paracetamol. Was given Tamiflu on 2nd day of the temp but I dont think it worked very well. He is slightly asthmatic and had the cough particularly bad. Didn't improve after 3rd Tamiflu day so back to the Doc. Turns out he had a chest infection too, how unlucky can you get? He was given a course of antibiotics which did not work so now he is on a second, different antibiotic.
He was supposed to start work experience in ITU at Robina Hospital on Monday. They have been really good about it and it will be rearranged for October.
They said the best thing to do to get over it is a multivitamin that contains minerals, particurarly Zinc. That is the advice given to the health care professonals that are suffering from it.
Hope you are better soon
Ren xx
Son number 1 is just getting over it, hit him really bad. Temp of 39.5, hardly touched by paracetamol. Was given Tamiflu on 2nd day of the temp but I dont think it worked very well. He is slightly asthmatic and had the cough particularly bad. Didn't improve after 3rd Tamiflu day so back to the Doc. Turns out he had a chest infection too, how unlucky can you get? He was given a course of antibiotics which did not work so now he is on a second, different antibiotic.
He was supposed to start work experience in ITU at Robina Hospital on Monday. They have been really good about it and it will be rearranged for October.
They said the best thing to do to get over it is a multivitamin that contains minerals, particurarly Zinc. That is the advice given to the health care professonals that are suffering from it.
Hope you are better soon
Ren xx
Sep 1st 2009, 8:12 pm
#40
I'm Old Gregg!
Thread Starter
Joined: Mar 2009
Location: A Former Bogan Colony in QLD
Posts: 8,460
Re: So, who else has got it?
Hello BS,
Son number 1 is just getting over it, hit him really bad. Temp of 39.5, hardly touched by paracetamol. Was given Tamiflu on 2nd day of the temp but I dont think it worked very well. He is slightly asthmatic and had the cough particularly bad. Didn't improve after 3rd Tamiflu day so back to the Doc. Turns out he had a chest infection too, how unlucky can you get? He was given a course of antibiotics which did not work so now he is on a second, different antibiotic.
He was supposed to start work experience in ITU at Robina Hospital on Monday. They have been really good about it and it will be rearranged for October.
They said the best thing to do to get over it is a multivitamin that contains minerals, particurarly Zinc. That is the advice given to the health care professonals that are suffering from it.
Hope you are better soon
Ren xx
Son number 1 is just getting over it, hit him really bad. Temp of 39.5, hardly touched by paracetamol. Was given Tamiflu on 2nd day of the temp but I dont think it worked very well. He is slightly asthmatic and had the cough particularly bad. Didn't improve after 3rd Tamiflu day so back to the Doc. Turns out he had a chest infection too, how unlucky can you get? He was given a course of antibiotics which did not work so now he is on a second, different antibiotic.
He was supposed to start work experience in ITU at Robina Hospital on Monday. They have been really good about it and it will be rearranged for October.
They said the best thing to do to get over it is a multivitamin that contains minerals, particurarly Zinc. That is the advice given to the health care professonals that are suffering from it.
Hope you are better soon
Ren xx
Well I certainly seem to be over the worst of it. I only really started feeling bad on Monday morning and got the Tamiflu on Monday night. since about this time last night though I've been feeling pretty good. All that I am really feeeling are the effects of a standard head cold, no more hallucinations or sweating like on day 1. I can't say for sure that it is the tamiflu that has done but it certainly came and went very quickly.
