Fwd: [igan] You Tube Lecture from Vanderbilt University Medical Center

http://www.youtube.com/watch?v=4KC2CEowZSk&feature=related

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.

CHOIR and CREATE studies - EPO

As far as I'm concerned, the risks of artificially raising hemoglobin
with EPO beyond a certain range are pretty clear.

CHOIR and CREATE studies - EPO

  Thanks for your considered response - yes, to be clearer, I'm
wondering if for me a higher hgb target might be a better option. Of
course I can discuss the pros and cons of epo shots with  my neph, and
I have, quite fully. But with modern medicine I think often the
discussion for an individual patient can go into territory beyond what
the current dominant methodology of the evidence-based model
proscribes. Evidence-based medicine is great, as far as it goes. But
what comes out of this methodology, generally, are general outlines
for the average patient. The problem is, some of us don't fit the
profile of the average patient.
      I think that with the black box warning on epo, pushing my neph
to go higher than the 10-12 range is asking quite a bit. Especially
since my investigation into the whole issue is far from complete.   In
my experience, in this modern world of the internet and interconnected
libraries, Pubmed, etc, a motivated patient can become a mini-expert
on any given condition. What the patient lacks of course is clinical
experience, the ability to read between the lines b/c of years of
seeing patterns and having strong hunches.
  As you suggest in your post, (and a bunch of other authors suggest
in papers written about the CREATE and CHOIR studies), there is a lot
more that is unknown about the issue of epo and ESAs.  And I'm
thinking that one group that is motivated to explore the boundaries
here are patients who have the most at stake.
   Its great to hear back from other people with their individual
experiences. It helps fill in the puzzle. Like Betsy's experience with
her son - the filling in of lived experience that helps all of us know
enough to pursue the best clinical outcome. The randomized,
placebo-controlled, double-blind trials give us the big picture,and
warn us of things we might not see coming. And then I think there is
room to become unblinded, so to speak, and look closely at whether or
not we match the phenomenon the study was looking at. Its tricky, to
say the least, but also the new frontier.
    I saw it when I worked in an HIV/AIDS clinic in the mid 90's -
guys who were on the internet every night pushing the boundaries of
what was then known were typically the first guys to get ahold of the
triple therapy and then some of them, I dare say, may have saved their
own lives. Of course these same guys were sometimes annoying as hell,
but that comes with the territory !
   Again, thanks ! - I'm getting some of the geeky discussion I was
looking for, after all!

CHOIR and CREATE studies - EPO

I am not in a position to discuss the technical aspects of these
studies but thought I'd pass on some info related to my son's
experience with EPO that is somewhat related. At first, his neph
referred him to a hematologist because he had a familial anemia as
well as the anemia of CRF. This guy was determined to "cure" the
anemia, but what we discovered was that as Ryan's hematocrit
approached (and often went beyond) the normal range, his blood
pressure would destabilize. He did not have a history of hypertensive
problems but was on lisinopril for the kidney-protective aspects and
as kidney function declined his natural bp did creep up some. When his
hematocrit was in the normal range as a result of EPO injections, the
blood pressure went way up and caused headaches, difficulty sleeping,
etc. Then the hematologist would cut back on the EPO and we'd have to
wait for Ryan to crash, hemoglobin-wise. It was a whip-lash pattern of
highs and lows, and I got frustrated with the hematologist's attitude
and ask the nephrologist what he would do if he were managing the EPO.
He had a more conservative, steady even if mildly anemic approach, and
my son quit the hematologist and let his neph manage the EPO with much
more satisfactory results. Although you'd like to get rid of the
anemia, a mild level of anemia seems to avoid the high and fluctuating
blood pressure issue, and the subsequent damage caused by that. What
my son also found was that he adapted to the slightly anemic level
maintained by the more conservative approach to EPO dosage and was
able to be quite active. He is not a high-endurance athlete but does
ski and hike (including 14'ers - we live in Colorado were hiking above
12,000 ft. is readily available).

amazing !

>
> I am someone that lurks but as my family has had some experience with
> what you are asking about I decided to respond.
>
> My husband was DX Apr93 at the age of 39 in acute renal failure
> w/IGAN (no earlier symptoms that we knew of), he rec'd a 6/6 antigen
> transplant from his brother Oct93 that lasted until Apr03 his failure
> in 2003 was a reoccurance of IGAN. Our son donated (Apr03) but then
> this kidney failed DX Jan08 due to chronic failure. He's been on
> dialysis since Jan09 but we have been cleared for another transplant
> scheduled for Aprl 7. I will donate this time. He has been told that
> he has a very aggressive form of IGAN. So we have gone into each
> transplant hoping for longevity but have known that there isn't any
> guarantees and to do the best you can and to make the most of each
> opportunity.
>

Fwd: [igan] Re: PD...Transplant....and employment.....

If you are working now, there's no reason that you couldn't keep on
working on PD, and then with a transplant. This assumes employment
that isn't too physical and that allows a bit of flexibility, and it
assumes you understand that everything about PD or transplant doesn't
work perfectly all the time. By that, I mean you have to expect some
inconvenience and some unforeseen problems. For example, you could be
running just fine on PD for months, and then all of a sudden, you've
got a peritoneal infection. When that happens, you might need some
hospitalization time, and then you might have to be on hemodialysis
for a few days or weeks until the infection is totally cleared,
depending on how severe it is. Or, if you start having some problems
with pain or whatever, they could have you come into the PD unit for a
day or two. This is where flexibility in the workplace comes in.

Or you could decide to do your PD overnight with the automatic cycler,
but then find out that it's not giving you enough dialysis, and now
you have to keep doing the overnight routine plus one or more twin bag
fluid exchanges during the daytime. There's just no way to predict
these kinds of problems.

Transplant is kind of the same idea. I mean, you never know when you
might need to be hospitalized for an infection or something. Just
don't expect to work the first month, and realistically, a couple of
months after the surgery. You will probably also tend to catch more
colds that go around the office than most people do, and when you do,
they can last longer and make you feel worse.

When you have little problems that crop up, you have to go to the home
PD unit, the transplant clinic, or the hospital, and that's not
counting other appointments with various specialists they might set up
for you. So you have to be available for that, because you usually
have to take the appointments as they are for the most part.

So, as long as you know what to expect, and you do have a bit of
personal flexibility in your job, there's no reason not to continue
working. That being said, I know a lot of people who are on various
forms of dialysis or who have a kidney transplant. Some work, some
don't. There can be no guarantees. Ultimately, you end up doing what
you have to do, because your life depends on it.

PD...Transplant....and employment.....: Working on Dialysis

Hi

I did PD  - during the day 3x a day and managed to continue full time
employment in a senior management position - My job was also
predominantly desk based and my exchanges took place around my working
hours  morning, after work and before bed. PD is designed to fit in
with you and your life and if you control it and don't let it control
you it is a great way of doing dialysis.

I have recently had a kidney transplant and allowed myself 6 weeks off
work following this and my employer has been great to keep me on full
pay throughout this time.

To be honest, I had a really smooth 'healthy' transplant with no
issues and I really could not have gone back to work in the first
month. My body told me I was doing the right thing in just staying
put!  But these last two weeks I have been champing at the bit to get
back.  I feel great - physically and mentally ready to get back.

If you can manage financially I would say realistically you should
give yourself a minimum of a month to recover. In the first month so
many things can go wrong and it is important that you look after
yourself, don't get stressed, do everything you should and focus on
YOU! This is a real opportunity to start living again and I would do
everything to make sure that you don't do anything to detriment it.
You will only kick yourself and wonder 'what if' if anything went
wrong.  Then if anything does go wrong you know you couldn't have done
anymore to help yourself.

Good luck with anything you decide and happy to talk m ore on PD or
the transplant anytime you want to

You know you've got IgAN when.....: Humor

Compilation from group members

You know you have IgA when..

1. You are the only one who knows what IgA is in a roomful of people.
 2. All the nurses stand around and stare at your really red urine in a
 specimen cup.
 3. The Nurses say to each other in the ER "Take a look at this." Like it
is a really cool case.
 4. You sleep more than your teenager.
 5. You know where the kidneys are located.
6. the lab knows you by first name
 7. Every time you have a cold you feel like hell and you pee coca cola
 for about a week.
 8. You can take a gadzillion pills a day.
 9. You no longer wince when you get a needle poke for a blood draw.
10. You get UTI's more than you pay your bills a month
11. You know more about your own disease than the ER doctor.
 12. You have a heating pad in the bed for the flank pain crisis.
13. if there is a decent distillation procedure, u can set it up at home
and make protein supplements for bodybuilders :D everytime u take a
leak.
nice way to make money aint it?
14. You forget to flush and your kids think you put cleaner in the
toilet
because of all the bubbles.
15. People look at you in amazement when you tell them you only have X%
function left, and they don't believe you because you look so good
16. You could probably draw your own blood faster than the lab tech.
17. You've mapped out where the dialysis centers are for future
vacations...just in case.
18. Your husband/wife points out a dialysis center on the way to a
frequently visited vacation spot and comments on how it would be a
convenient rest stop on your future trips
19. You are happy to feel like crud because it means your kidneys are
still
working
20. You scare paramedics by saying "If you give me saline solution I
will
punch you" :-)
21. Your pharmacist yells your first name with a hearty "Hi" like you
were
an old friend as you approach the counter
22. You avoid cameras and mirrors until the "moon face" goes away
23. You want to wear a shirt that says "No I'm not fat I'm on
Prednisone"
24. You know you're post transplant when you pee, see lots'a bubbles and
almost pee your pants, then remember that your husband just used the
toilet bowl cleaner
25. Your face is always in the toilet wondering what your urine will
look and smell like after you pee
26. You know a Pic line is not a part of the male anatomy
 27. You wonder if all the advts for potassium are a hoax (everything
seems to have it anyway).
28. You realize urinating is a priviledge...not a dirty thing.
29. You imagine what can 'affect' the lab results whenever you do not
like what you hear.
30. You still hope you will be on the 50% of those who do not make it
to ESRD...even when your creatinine is 4
31. You remind yourself of statement in this group that "if we had to
get a kidney disease...IGAN is the least worst option"
32. You think an artificial kidney will be invented by the time you go on
ESRD.
33. You pray deeply for some stem cells lurking around to activate and
go become kidneys.
34 Your kids have spent their birthdays and Christmas Day opening presents
in the hospital while you are hooked up to an IV and other machines. You try
to hide the equipment lines and your ratty hospital hair for the special
family Christmas pictures that year.

35. Your kids say they want to bring you in for science class.

99. You realize you can't take life, health and in general anything, for
granted.

Newly Diagnosed : What does it mean

Nobody can predict the future when it comes to any kidney disease, but
I had IgAN for about 25 years, and I've been through almost everything
personally.

Let's look at the best-case scenario, and then the worse-case. Chances
are your husband's history with IgAN will be somewhere in between.

The best-case is that the IgAN gradually worsens kidney function over
many years, but never to the point that it can be considered to be
renal failure. In that case, not too much happens really. It takes a
very significant loss of kidney function to start producing noticeable
symptoms of insufficient renal function. Most people who are in that
group will just continue to live normal lives, even if they
occasionally might feel a little flank pain, or see some tea-coloured
urine. A normal lifespan might be reached before the kidney disease
ever declines to the point of it being renal failure.

The worse-case is that kidney function declines more rapidly, and that
the person eventually needs dialysis or a kidney transplant. "Rapidly"
could be anywhere from a few years to maybe 10, maybe 20 to 25 years.
Until that person's kidney function reaches about 30%, life should
still be relatively normal, even though there will probably be
medications and their side effects. There are people who do reach
kidney failure much faster, but, this is usually a case where they
already had it, but for whatever reason, they already had declined to
low kidney function by the time it was discovered. That's probably not
your husband's case, because if it were, he wouldn't have as good a
kidney function as you say he does. Renal failure is considered to be
when a person has 10% or lower kidney function. With IgAN, it can take
a long, long time to get there.

Now, in the best case scenario, there really isn't that much to worry
about. However, in the worse-case, there will be dialysis or a kidney
transplant in the future. But none of that means that your husband
won't be able to have a mostly normal family life. Let me use myself
as an example...

My kidney disease was discovered when I was about 24. I married my
wife a couple of years later, and we had two children. They are now
both adults. I have a kidney transplant, which I got 4 years after
starting dialysis. I was actually 49 by the time I needed dialysis. In
the meantime, it was just a normal life like anyone else. My life only
really started to be affected once I developed hard to treat
hypertension. This was about when I was 35. I had a really hard time
with some blood pressure medications, and that slowed me down
somewhat. But other than that, I really couldn't say that I was sick
in any obvious way.

Once I started dialysis (hemodialysis in my case), I definitely was
not able to work. Some do, some don't, and it depends on the
individual case. Not everyone is the same. Even is we consider
dialysis to be disabling, it's not disabling to the extent that the
person is a not able to do anything, or play with the kids, etc. It's
just that dialysis takes a lot of time, and overall, it's about the
equivalent of a part-time job. Even for those who can't work at all,
it's not like they are invalids. It's more a case of not being able to
reliably attend to a full-time job.

Life with a kidney transplant is not perfect either, but it's better
than having to be on dialysis, and it seems like a more normal life.
But, in either case, it's not like you should be thinking of death or
anything like that. I mean look at me. As I said, I was on
hemodialysis for 4 years, and I've had a kidney transplant for over 2
years so far. Even after all that, and the prior 25 years with only
the IgAN, we're still talking about more than 30 years since my
initial diagnosis. Even now, I can still ride my racing bicycle every
day in nice weather, and I use a stationary cycle during the winter.
Usually, I cycle for an hour or more, and then I may even walk for
another hour. I ride up hills, and I can easily ride 30 km in an hour
and a half without pushing myself too much. I average about 20 km per
hour, so it's still a fairly vigorous ride, and not exactly like a
casual stroll on those famous Copenhagen bike lanes. So, all this to
show that I'm not exactly an invalid on his deathbed. That's not to
say that I'm not at greater risk for cardiovascular and other health
problems than the average man my age (55), but the way I look at it,
I'm here now, while other people I've known over the years are gone
even though they had no IgAN.

So, yes, things can happen, and there will probably be some
complications along the way, but you shouldn't dwell on the idea of
death too much. Just think of how that would have ruined my past 30
years if I had done that. That's not to say that I never had my
moments of frustration and worry about the future, but overall, life
goes on -- not perfectly, but who has perfect life except in Hollywood
movies and TV programs?

Scarring is something that almost everyone who has had IgAN more than
a few years has. It's nothing especially significant, because that's
what IgAN does. Of course, it would be better not to have any, but if
it's there, it's there. The good thing is that your husband is being
treated, and maybe the progression of that scarring will be minimized.

One thing that IgAN did for me is that it made me become more aware of
the importance of exercise and a reasonably healthy diet - at a fairly
young age. Most "normal" people are only sporadically aware of that,
but a person with a known kidney disease should find the motivation to
stick to healthy habits as much as possible. That will help make life
better, and if worse comes to worse, being healthy other than having
kidney disease will make any experience with dialysis and/or a
transplant a lot easier later on.

Best of luck to you and your family.

Prognostic factor in IgA nephropathy : Studies

Title:
Mesangial C4d deposition: a new prognostic factor in IgA nephropathy

Extract:
It has been shown that patients with IgA nephropathy can be divided
into two groups on the basis of the pattern of complement activation.
Activation of the lectin pathway of complement is associated with more
severe renal disease. Glomerular deposition of C4d is a marker of
activation of the lectin pathway of complement. The aim of our study
was to determine whether C4d staining at the time of the renal biopsy
could identify patients with a different long-term prognosis in IgA
nephropathy.

You can read the rest of the abstract at:
http://ndt.oxfordjournals.org/cgi/content/abstract/24/3/886

Controlling Phosporous during Dialysis: Phosporous

Sorry you had to finally reach that point, but, you're talking to
someone who was on it for 4 years. If I end up sounding blunt about
it, it's because I've been there. I'm more into helping people deal
with it in effective ways than in sympathizing :-)

There's nothing you can do about phosphorus other than taking your
binders and absolutely minimizing phosphorus intake. I know it's hard,
but if you have that problem, you just have to choose other foods. Is
your renal dietitian helping you much with that?

But don't feel bad if it's not enough in terms of phosphorus.
Sometimes even the best you can do is not enough.

If you were able to drag it out a long time before you started
dialysis, one negative effect of that might be that by the time you
start, you have very little natural kidney function left. Having some
of what we call "residual kidney function" really helps to supplement
what dialysis is doing for you until you can get a transplant, and
this applies to both peritoneal dialysis and hemodialysis. One reason
why it's helpful to have some is that while dialysis can easily deal
with things like potassium, it's not very efficient at removing
phosphorus.

The only other solution is longer and more frequent dialysis. You
can't get that in a dialysis centre, but you can at home if you have
access to that. There are 2 ways: short daily hemo, and daily
nocturnal hemo. Some dialysis centres might offer nocturnal
hemodialysis 3 times a week at the centre itself, but that's still
kind of rare. There's no substitute for long, daily dialysis when it
comes to keeping you healthy. The only reason we have the 3-4 hours 3
times a week kind of hemodialysis today is that it's what is practical
and affordable for the government to pay. But it's far from ideal in
terms of how good the dialysis is.

In the U.S., if that's where you are, the best and most available
compromise might be "short daily hemodialysis" you do yourself at home
with a small, transportable NxStage machine.

I was on the same kind of hemo as you are for 2 and half years, and
then I switched to doing daily nocturnal hemodialysis myself at home
until I got my transplant a couple of years later. It was a lot of
work and responsibility, but the upside was a dramatic improvement in
all my numbers. Absolutely everything normalized.

But if none of that is in the cards, you just have to keep working at
limiting the phosphorus intake, or do whatever you can to lose that
weight so you won't delay your chances of getting a transplant. I
wouldn't second guess those guys. They know what they are doing. If
they say you need to lose weight first, you need to lose weight. It's
as simple as that. They aren't in the business of deliberately keeping
people from getting a kidney. Just do it, and do it now, would be my
advice. The longer you delay getting a transplant, the worse your
health gets. In the meantime, whatever you do, don't ever miss or
shorten any of your dialysis treatments, and you might even want to
ask your neph if you could have them a little longer. The longer your
treatments, the more phosphorus is removed.

General info on paired donation: Paired Donation

What may not be evident at first glance is that paired kidney
transplants are exceedingly difficult to accomplish. It's very hard to
match suitable pairs, and to have any reasonable chance of paired
kidney donation making any sort of impact on the number of transplants
performed overall, the system needs to have access to a very large
pool of potential recipients and donor pairs who are willing to
participate.

Canada has a much smaller population to draw from compared to the
U.S., plus, that smaller population is already divided up into smaller
provincial ones when it comes to transplant waiting lists. There is no
national transplant list in Canada as there is in the U.S., and so by
having a national registry for paired donation, it is hoped that this
will provide the larger pool of potential donor/recipient pairs needed.

Paired donation is when you have two people who need a kidney, and
each has a willing and qualified live donor who isn't a match for them
but might be for another pair. Once you get past that point of finding
the paired matches, then you still have to pass all the other matching
and health-related matters, and in addition, both pairs must be
available for the transplant operation at the same time.

In the US, you already have a national registry. I don't know how it
relates to paired donation at the moment, but another plus in your
favour is the much larger population to draw matching pairs from.

While I agree with the benefits of paired kidney donation, I can see a
few problems as well, such as the fact that it inevitably favours
certain blood types for pairs. I can also see it causing family
problems as from now on, spouses and other qualified family members
will be under pressure to do this if they are not the right blood
type. Until now, you weren't the right blood type, that was the end of
it.

Eligibility for Disability : Tag Disability

Unless you have some other medical situation, I highly doubt that you
would qualify for disability for any kidney disease unless you have to
start dialysis. So, that choice might not even be open to you anyway.
Chronic kidney disease by itself is simply not considered to be a
disability unless you're in end-stage renal failure. Now, some people
might get it anyway, because they have cormorbid conditions that make
the whole situation worse and make it impossible to continue with
employment. It's not easy to convince insurance companies that it's
needed. They make the decision, you don't. All you can do is to decide
to apply, and then go through the almost mandatory appeals. Waits of a
couple of years are not uncommon, and if a person is really in need
during that time, the only option might be welfare.

I've been through all this myself, because I was self-employed as a
freelancer at the time my kidney function started really tanking after
almost 25 years of having IgAN. Despite my past military service, I
couldn't get any benefit for that, since the renal failure wasn't
really related to military service. As I gradually could work less and
less due to a series of hypertensive crises combined with asthma, I
had to start relying more and more on the social safety net. In my
world, most people who are on dialysis have to do the same.

But the bottom line is that it's very unlikely you can get disability
benefits of any kind, private or government, unless you are on
dialysis. Chronic kidney disease just isn't disabling enough until
that point. It shouldn't be a problem after that, though.

I manage with whatever disability benefits I paid for during my 30
years of working, a partly-subsidized apartment, and my drugs are paid
for by another provincial government plan. Transplant drugs are
extremely expensive. Mine are fully paid for (except for a $2 per
prescription co-pay which the pharmacy itself absorbs), whereas the
transplant patients who still work and have work-related prescription
coverage are on the hook for that 20% co-pay. This adds to a lot of
dollars when you're talking about transplant prescriptions. One
advantage in the US is that tranplant meds are covered for the first 3
years.

The only way to survive with minimal income is to minimize expenses,
which means things like doing without a car.

Once a person is on dialysis, even in the U.S., you're looking at
socialized medicine. Dialysis is paid for by the government because
it's too expensive, and so are most costs related to a kidney
transplant.

First time poster

Let me also welcome you to the group, Chris. As always in such cases,
we're sorry you have to be here, but there's no hiding from renal
failure once you have it, so many people find it useful to be able to
communicate with others who have been there.

Renal failure is renal failure. Right now, you're not quite at the
point where you need dialysis yet, but you're getting close. It really
doesn't matter what specialist you see, because when you get to that
level of chronic renal insufficiency, you are late pre-ESRD (ESRD
means renal failure needing renal replacement therapy), and it doesn't
matter as much what specific kidney disease got you there. What
matters is that you are pre-ESRD. It's the stage where you have to
start considering dialysis options should you need them, and/or
transplant. Considering transplant doesn't necessarily mean looking
for a potential live donor, but also getting yourself evaluated and
approved for it. This way, you can start accumulating some time on the
waiting list should you need that. You never know, because we have had
quite a few on this group who unexpectedly were offered a perfect
match kidney before even starting dialysis, or soon after. No
guarantees of course. Some get lucky that way, others wait for years
on the waiting list like I did (4 years on hemodialysis before I got
my kidney transplant). But however it ultimately works out, you have
to get into the system as a potential kidney transplant recipient.
Then, if you do have a live donor, so much the better.

Kidney transplants don't always happen or work out as we would like
them to, so it's not a bad idea to also learn about what the dialysis
options might be. There is only hemodialysis and peritoneal dialysis,
but there are several options within those 2 methods. Don't let it
scare you too much to even look at it. I was on hemo for 4 years as I
said, and I'm still here doing this.

If it was me, I would forget about looking at it as IgA Nephropathy,
and start looking at it more as ESRD. Right now, the treatments
available to you are the ones to help mitigate the effects of having
advanced chronic renal insufficiency.

Unfortunately, the dietary goal posts do move and that's to be
expected, because any requirement for dieting will depend on your
blood work results. There is no universal diet that everybody should
be on. You only diet as is required. Not everybody even with full ESRD
has the same kidney function, or the same dietary requirements. For
example, it's only necessary to limit potassium if you have to limit
it. Some people don't, because their kidneys still have enough ability
to regulate potassium. IgAN patients frequently reach ESRD with only
minimal dieting needs. The ability to excrete certain things in urine
is not directly related to glomerular filtration rate, and so if you
still urinate well, that can take care of a lot of potassium (just one
example).

There is always talk about using a very low protein diet, but this has
to be balanced against the need to avoid protein malnutrition. Already
being malnourished by the time you start dialysis or get a transplant
is an added and unnecessary risk for greater morbidity (and even
mortality if it's severe). Because of this, your nephrologist may not
want you to diet in this way. There is nothing you can diet on that
will restore or truly preserve your kidney function. You only need to
diet for things that are too elevated if they are, like potassium,
phosphorus, etc.

I would love it if there was any product that helped, but there's no
product out there that will help with this. It's not like many people
haven't already been there and been seduced by claims about health
products. They are all on dialysis or have a transplant just the same,
and if they aren't, it's not because of any product like that. I would
encourage you not to take anything like that without discussing it
with your nephrologist first, as Sophia already advised in a previous
post.

What will help you the most at this stage is following your
nephrologist's recommendations, such as taking the blood pressure meds
and any others that might be deemed necessary (such as Lipitor, EPO,
vitamin D supplement or analog, etc.), AND, taking care of yourself.
If you don't have a prescribed renal diet, you can at least eat a
heart healthy diet. You can also try to keep as fit as possible with
your doctor's approval. That will help keep you healthier and stronger
even if you have to be on dialysis, and if you do get a kidney
transplant. The fitter and healthier you are before, the fitter and
healthier you will be after, and the easier the whole experience will
be.

Good luck. Let's hope your kidney function will hang on for a long time still.

Me, I'm looking forward to Spring when I can start taking my road
bicycle out again for my usual 10-30 miles rides every day. In the
meantime, I'm doing the equivalent of 30 kilometres every day on a
stationary cycle, plus I walk an hour a day on average (6 days per
week). I'm not always in perfect health, and certainly, I get passed
and dropped regularly out on the road and paths, but it's not bad for
someone with my renal failure history. I'm just saying this to show
that you need not think of dialysis or transplant as living life on a
deathbed. There are many people who are doing all kinds of things in
this situation.

Label: First time poster

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A collection of some of the posts from IGA-Nephropathy Group