Anybody else in the same boat?

July 28, 2004

I would count myself in the same boat as you. I first had symptoms as a

teenager in the 70s, not sure exactly what year they first detected protein, but

I

know it was before 1976. Now my clearance is down to about 20, but I am

trying to hold steady there. As Pierre told you, once you are past a certain

point, it is almost a given that eventually you will reach end stage renal

disease. It is more a question of when than a question of if. The best things

you

can do is to follow the renal diet ordered by your Neph, and make sure your BP

stays low. Try to avoid getting sick and make sure you allow your body the

rest it needs as well.

I tease my Nephrologist that I am looking for a 10 year guarantee before my

kidneys give out. My real goal is to get my youngest daughter through college.

She is starting her junior year in August, then has grad school after that.

I am sorry you have cause to join us, we certainly do welcome you and look

forward to getting to know you.

In a message dated 7/28/2004 6:17:36 PM Pacific Daylight Time,

oceanboy_us@... writes:

> Hi everyone,

>

> I am new to the group here, but I have had IgAN since 1986. Recently

> I found out that my creatinin had risen to 3.8 and my GFR was below

> 30. Anyone else in the same boat? What can I expect in the future?

>

> Thanks!

>

July 28, 2004

Hi everyone,

I am new to the group here, but I have had IgAN since 1986. Recently

I found out that my creatinin had risen to 3.8 and my GFR was below

30. Anyone else in the same boat? What can I expect in the future?

Thanks!

July 28, 2004

Well, that's a fair degree of renal insufficiency you have already. Here's

my own personal example (very briefly summarized):

1978-79 - blood in urine first detected, then protein sometime thereafter

1990- proteinuria heavy enough for new referral to nephrologist by my family

doctor, but kidney function still pretty close to normal

1993 - biopsy, and kidney function now at 50%

2000 - start flirting with the 30% kidney function level (that's the same as

a GFR of 30, more or less)

2002 - from January to August, serum creatinine jumps up and down repeatedly

from 300 umol/L to 400 umol/L, in September, it gets close to 500 umol/L,

and finally in October, I started dialysis.

When it starts going down, it tend to keep going down, but you can get some

periods of relative stability. It's unpredictable, but at the level of renal

failure you have now, it's probably not going to get any better. I hate to

sound discouraging. There's a chance you could stay a long time at that

level. There's even a chance your current level is a blip and your serum

creatinine will come back down a bit. But, the reality is that you have a

significant level of chronic renal insufficiency at present. What can expect

in the future? Unless there's a miracle or some new treatment comes along,