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.
No comments:
Post a Comment