Re: Re: For Mia

[Guest guest]

Very nice webpage Mia, and very touching too.

As for the 18%, as Marty said, I think there are many variables involved. My

neph doesn't actually know that I know a bit about these things, and she

never, ever even mentions percentages if I don't ask. But she has been

following me for over 5 years. I think she relies on any changes in the lab

results to clue in on when to start various things. For example, she will

say something to the effect of starting on some vitamins maybe the next

time, then I don't hear a word about it for two, three or more follow-ups,

and the next one, I leave with the appropriate prescription. There's more to

it than just creatinine, although obviously, that is the main criterium.

Some nephrologists are more in tune with current ideas about pre-ESRD

treatment than some others. I know mine is, and even though our relationship

isn't exactly perfect, I'm confident that she will do the right things at

the right time, and that she will get me onto dialysis sooner rather than

later.

I think some nephrologists may appear vague or uncommunicative, but they

just don't want to worry their patients with details.

Also, sometimes, in an acute situation, it's possible to have very low

kidney function that will get better.

Pierre

Re: My sitrep

> I am a bit confused too... I know that my first neph was very worried

> when my creatin rose to 2.1 and now my new neph tells me it is at 8.3

> just 3 years later.... so is it different for everyone? Is 3.0 bad

> for

> some and not so bad for others? I know that when my neph is figuring

> out the % of function I have left he does a calculation that includes

> my creatin and my age.... at my last apointment he told me I had

> about 18% function left total. He can be vague and has not told me

> what numbers we need to get to before I HAVE to be on dyalisis. Any

> input anyone?

> P.S. I am amazed by you all. You have welcomed me and helped me out

> alot in the short time I have been in this group! Thank you!!!

> Oh and if anyone wants to meet me and my family this is the memorial

> website I created for my daughter that passed away:

> http://www.geocities.com/vanessa_denae

> Mia

>

>

>

> > > Well, if any of you are interested, here are the results of my

> > latest follow-up with the neph (not because it's me, but because

> I'm

> > assuming it's a good example of how things happen when you start

> > getting closer and closer to end-stage). Control your BP very well,

> > and you may never get there (this applies especially to the

> chronic,

> > slowly progressing type of IgAN)!

> > >

> > > Serum creatinine up from 296 last time it was checked to 318.

> Now,

> > that I would at some point in the future reach end-stage was always

> > pretty much a foregone conclusion for at least the past 5 or 6

> years

> > (due to the slowly but steadily increasing serum creatinine and the

> > very hard to control BP). At least 3 years ago, I remember her

> > telling me that when I passed the 300 umol/Litre mark (about 3.6 in

> > U.S. terms), she would refer me for pre-dialysis counseling. So,

> I'll

> > be getting a call soon from a nurse at the closest kidney centre

> > for " treatment options education " . Other than that, no change

> except

> > one.

> > >

> > > Unchanged:

> > > Avapro (irbesartan) 150 mg

> > > Renedil (felodipine) .25 mg

> > > Lasix (furosemide) 20 mg twice daily

> > > Calcitriol (a form of vitamin D) 0.25UG

> > > Calcium (one regular 500mg Tums with every meal)

> > > No dietary restrictions whatsoever (potassium is no longer

> elevated)

> > >

> > > Oh, and I also take pantoprazole to help with recurrent heartburn.

> > >

> > > Added:

> > > vitamin E 400 IU (this is supposed to help with foot cramps I've

> > been experiencing lately as a consequence of advancing renal

> > failure). An itching problem I had hasn't come back since I've been

> > taking calcium.

> > >

> > > To be honest, all things considered, I don't feel all that bad.

> > Except for the recurring nausea and how quickly I get tired from

> > exercise, nobody would even know I have this. Because I've been

> > bicycling for years, this is one method I use to gauge the

> > difference. Last year, I could go just about every day. This year,

> I

> > really need a day in between to recover, plus my legs start giving

> up

> > a lot sooner. Of course, I'm on disability, so I don't have to go

> to

> > work every day.

> > >

> > > Pierre

>

>

>