Diagnosed with IGAN what do I need to know

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Diagnosed with IGAN what do I need to know

Postby MrKenyon » Wed May 11, 2016 7:26 pm

Hi guys,

I'm 27 and about a month or so ago I was diagnosed with IGA Nephropathy, I have an appointment coming up and want to know what should I be asking the doctor ? All I know is my kidney function is around 70% but not much more than that. I'll put my background storey below for those who want to read. I'll be honest as I can so please be kind, I know it's easy to judge.

I was a body builder and had been for 11 years. So my diet was high protein for a long time, on top of that I did take steroids, not in the amounts that others do but nether the less I did. I was at the end of my second course where I became very ill, after 4 days of constantly being sick at home I went to hospital where I stayed for just over a month from there.

Long story short I gained sepsis which attacked my kidneys and heart, I was a day from death if not closer. My kidney function dropped to sub 10% to around 4% I believe and I was put on dialysis 4 times. my kidney function was regained from that point and rose to where it is now.

Subsequently I had a biopsy which revealed I have IGA Nephropathy. I have done some reading on it and vainly understand what it is, but what questions to I have to ask the doctor to find out what I need to know in terms of how this is going to effect me short and long term.

I have a habit of not making a big deal over big things, and to be honest brushed this off at first but now it is playing on my mind.

Any help appreciated and I am more than happy to give more info if anyone wants to hear more :?:
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Re: Diagnosed with IGAN what do I need to know

Postby SKM23435 » Thu May 12, 2016 7:41 pm


My main piece of advice is to make a list of questions. We all tend to forget what we wanted to ask as soon as we get into the room with a consultant. It's also often helpful to take someone with you partner/friend/family member. It saves them quizzing you afterwards and gives you someone to discuss what was said.

I guess I'd have loads of questions but they would include:
Why has this happened to me?
What does it mean for my future?
What happens next?
What is going to happen in the future? My outlook?
Is this lifelong?
What can I do to help?
Am I going to need dialysis/ a transplant in the future?

Many of these questions won't have an answer. A lot "depends". But it's worth asking.
70% function is good. So you need to know how to keep it there.

Let us know how you get on.

Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Joined: Wed Oct 16, 2013 2:39 pm

Re: Diagnosed with IGAN what do I need to know

Postby Johnylefox » Fri May 27, 2016 10:17 pm

Ok mate,
I was diagnosed in January 2014 with an GFR of 58% and by the following week it was 66% but it fluctuated wildy.
Looking back I was symptomatic in 2009 (blood in urine, eGFR 72 but no blood pressure) but was only investigated by a urologist who discharged me. In 2012 I still had blood but my eGFR was still 72 and no blood pressure so I was discharged again. No referral to a nephrologist.
Fast forward December this year and I was down to 25%.
From recollection I was eGFR 66% in January 2014, 50% January 2015, 45% June 2015, 35% October 2015, 25% November 2015 then by January I touched 19%. By February I was in hospital having a catheter installed and down to 7%.
So you need a plan.
1) How often will you see your neph? At the outset they need to see a trend and hopefully a stable one, so if you see the neph today then you should see him again in 2 months maximum provided there are no symptoms
2) You need to become familiar with red flags symptoms e.g. ankles ballooning, BP going through the roof.
3) Set a BP target and move heaven and earth to stick to it. BP will slaughter a healthy kidney so you need to closely monitor.
4) Don't pay too much attention to probability outcomes, there are graphs which consider protein leak and eGFR and they give a percentage chance of failure over 'x' years. I was rated at a 10% chance of failure over 10 years as of January 2014.The actuality was 100% was after 2 years!
5) Accept many people with iGAN will experience failure over 20 years and you will need a donor, living relatives are better than deceased stranger donors so be nice to your siblings, I am serious, maybe even sound them out now for willingness to donate. And keep them sweet.
6) Diet, I only met a dietician when I was on dialysis, which was a shame because for the last forty years I have eaten baked beans, melon, bananas, chocolate and liver like it was world war 2. All of these are banned or severely restricted when you hit dialysis.
7) Remember there are people with 30 of iGAN who still have working kidneys, with no need for transplant. Prepare for the bad times but don't let it rule your life.
8) Accept a doctor will not have every answer, there is no cure and iGAN is not directly treatable, we just minimise the BP symptoms and try to surpress the immunise system.

Thats my advice which you are free to take or leave.

I got confirmation of a willing donor today and we start testing soon.

Dialysis is a pain in the arse but it is liveable.

We ride again.
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Re: Diagnosed with IGAN what do I need to know

Postby wagolynn » Sat May 28, 2016 3:05 pm

Johnylefox above, says it all but I would argue with no 6) Diet.

The dietary advise given to patients on dialysis is not to preserve kidneys but rather to compensate for the failings in dialysis, dialysis is not very good at removing Phosphates, and Potassium, therefore the diet is intended to reduce the patients intake of these two elements, the diet will not improve kidney condition.

Both of these elements are vital to life, in the right amount, in a patient with healthy kidneys, eating a reasonably balanced diet, the intake of Potassium, and Phosphate is too high but the kidneys excrete the surplus.

It is unwise to follow this diet without medical supervision, permanent damage can be done or even death.
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Re: Diagnosed with IGAN what do I need to know

Postby Johnylefox » Sun May 29, 2016 5:23 am

I am sorry if point 6 was unclear.
It is intended to say a dietician would be helpful before failure not just afterwards
And the foods I have listed are banned for me not everyone.
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Re: Diagnosed with IGAN what do I need to know

Postby wagolynn » Sun May 29, 2016 5:41 pm

Hi Johnylefox,

I cannot find any information that suggests dietary changes (assuming a reasonably healthy diet anyway) can prolong the life of kidneys, the exception would be in the USA, where the first class protein (meat) is excessive.

My dietician says the same as above, I am on haemodialysis.

Reducing salt or Sodium on food labels, will help with blood pressure problems.

When I notice anyone posting who suggests that kidney function can be improved by dietary changes, I try to correct this because I hate to think of patients making changes based on false hope. When it does not work they are very disappointed, and seeing as a tendency towards depression, is one of the symptoms of kidney failure, the disappointment becomes more significant.

If people feel they ought to make changes, a move towards the 'five portions of fruit or vegetables a day', for their general health, would be the thing to do.

On the face of it, dieticians do not make the point strongly enough, the dietary restrictions are to compensate the failings in dialysis.

I hope that makes it a bit clearer.

Best wishes.
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