New to this igAN thing!!! : Introduction to IGAn/Kidney Disease

> I have just been diagnosed with igan after a biopsy. Thought i had
> something else but seems was wrong. Found websites to be vague. My
> disease is aggressiveand has been with me only since Nov 2008 when i had
> a viral infection. What happens next!!! My Gfr is 26 and im at stage 4
> and im being put on iron iv and epo injections along with Bp beta
> blockers and collestral tablets. I am 49 2 sons a wife and 2 cats. The
> consultant says its incurable and untreatable and will lead to
> transplant sooner rather than later, is it really as bad as this???
>
>

Welcome to the group.

I'm going to try to put your situation into some kind of perspective,
but it's going to take some explaining, so please bear with me.

IgAN itself is not renal failure. It's a condition that can lead to
it. It really doesn't do much of anything except cause immunoglobulin
A protein complexes to deposit and gradually build-up in the "filters"
of the kidneys. As this process carries on over many years, mostly
unseen and unnoticed, kidney function (measured as glomerular
filtration rate) declines, until eventually, there isn't enough left
of it to support life without dialysis or a kidney transplant.
Sometimes, it's so benign that the person has already had IgAN for
years before it's discovered, simply because there hasn't been any
symptom to check out. This may sometimes be the case when a person is
suddenly "diagnosed" with IgAN when kidney function is already
seriously impaired. What triggers the discovery is often a viral or
other infection that causes some degree of acute renal failure in
connection with the already underlying and unsuspected IgAN. This
often causes a biopsy to be performed, and lo' and behold, they find
the characteristic signs of IgA nephropathy in there. So, now you have
IgAN, but what you really have is chronic renal insufficiency.

Some of the acute loss of kidney function under those circumstances
may or may not be permanent, so, I would have to be cautious about
making any assumptions based only on short term information about GFR.
After some time, it's possible that some of the lost kidney function
will be recovered, but probably not all of it. For example, you might
be at an estimated GFR of 26% now, but it might stabilize around 35%
or more after the acute crisis resolves. But it really doesn't matter
that much other than buying some time. These GFR estimates are not as
accurate as counting pennies. It's not like today you have 26, and
tomorrow you have 25.

Once kidney function is down below 50%, chances are that the person
would need renal replacement therapy (dialysis or transplant)
eventually. This is because irregardless of what kidney disease caused
the decline in kidney function, having less than half of it left is a
condition that feeds on itself. Loss of kidney function causes more
loss of kidney function (even if the original kidney disease were to
be magically cured).

What we can't predict, without the person already having a few years
or at least months history of known declining GFR, is when renal
replacement therapy might be needed. It takes a longer history of
these numbers to be able to make a good prediction. Some people could
stay in the 20 or 30's for years, while others might decline faster. A
GFR of 10% is usually about when dialysis or transplant is needed
(although a person might be able to live without it for some time even
then).

All the above is my best attempt to explain why dialysis or transplant
will probably be needed, and to explain how at some point, it's not
the diagnosis of IgAN that matters so much as it is the diagnosis of
the fact you have somewhere in the area of 25-35% kidney function. You
might say that at this point, your disease is more "chronic renal
insufficiency" rather than the IgAN that caused you to get there.

Generally-speaking, it's prudent to start thinking ahead about renal
replacement treatment choices when a person is at the level of GFR you
are. This is because there are choices to be made eventually about
dialysis methods and transplant arrangements. Woe the person who
denies it and waits until he or she needs emergency hemodialysis via a
neck catheter some night and has to be rushed to hospital by
ambulance. Much better to have been prepared in advance with an
informed decision about dialysis method (peritoneal or hemodialysis
and the various flavours within those categories) and transplant
options explored. It's a lot less stressful to both mind and body when
you can be eased into dialysis before it becomes an outright
emergency, or you can get a pre-emptive live donor transplant because
you have had time to have both yourself and volunteers evaluated for
it. This all takes considerable lead time.

Don't despair. I have no idea what will happen in anyone's case, but
all I can say is that I had IgAN for years, was on dialysis for 4
years, currently have had a kidney transplant for over 2-1/2 years...
and I feel better now than I did the 2 years leading up to dialysis.
There are no guarantees for me or for anyone, but that's the way it is
in the present, and it's the present I live in.

About 7-8 years ago, before I started dialysis, I had declined to the
point where my beautiful, custom made-to-measure all-Italian racing
bicycle mostly stood against a wall of my living room as a memorial to
my past glories (no, never been a racer, but I was an enthusiastic
recreational rider). At that time, I could barely ride the damned
thing around the block. Very gradually, after I had started dialysis,
I felt well enough to gradually start riding it more and more. I felt
even better after I finally got the kidney transplant a couple of
years ago. I was able to gradually increase my riding distance from a
few blocks until eventually I was able to easily ride 30 km in less
than a couple of hours. Since, I've ridden even longer. It's not much
in the grand scheme of things, but for me, it's just totally amazing.
But at the very least, it does help me show others that there is hope
after dialysis and kidney transplant.

Best of luck to you, and here's hoping that dialysis or transplant can
be delayed far into the future. Life doesn't come with a guarantee of
health, but we can certainly make the best of what we have.