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, I had two; in Dec. 98 they debulked slightly, collapsing a wall of the

cyst in the tumor which was causing problems; unfortunately the cyst healed

itself and came back with a vengence; so in April 99 they did an agressive

debulking.

Marie

Question

Has anyone had a double debulk on one of their tumours??

I ask as it is one of the possibilities I am considering. as the one which

is now compressing my brainstem at the 4th Ventricle point, is going to be

removed soon, and I have been told I will end up with both sides of my face

drooping, and if I can avoid having to end up like that I will be very happy.

It was debulked in 1992, had GK in 1996, So is there any hope for me????

Cheers to the boys and Hugs to the girls

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  • 1 year later...
Guest guest

Lauara please get checked out for diabetes....those are the symptons of

diabetes...I ignored mine for a year before I finally went...did like the

weight loss though...but was harder to get it regulated...

could also be thyroid...but which ever a blood test should be able to tell you

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Guest guest

Ruling out an infection and diabetes of course, it could be interstitial

cystitis.

Hope it's something simple and brief.

Take care.

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Guest guest

Hi Kristi,

Yes, apart from the dry mouth, I put on about 30 lbs in weight. It did

help with enriching the power of pain killers and irregular sleep

patterns I had with M.E. initially.

The dry mouth was the worst thing. As bad as the Arizona desert.

Love and hugs,

Lilian

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  • 9 months later...

Hi Fre.

The proteinuria reduction obtained by ACE inhibitors is not due to any

immunosuppression. It happens only because of how the ACE inhibitors (and

some other BP meds) affect the dynamics of blood flow within the glomeruli.

There is no suppression of the immune system. If an ACE inhibitor causes

problems in terms of intolerable side effects, yes, there are other drugs.

First in line are close cousins to the ACEI's: the angiotensin II receptor

blockers. And if that doesn't work either, there's also the older standbies,

diltiazem CD and verapamil SR.

As to your last question, there is no good evidence that a low protein diet

does anything if kidney function is normal, and that's why nephrologists

usually don't bother with it. There isn't even solid evidence that it does

anything to delay dialysis even in more advanced renal failure (although in

this case, there are other reasons to be on a low protein diet anyway). So,

unfortunately, this is a question without an answer, and something which is

still the subject of debate in the wonderful world of kidney disease.

However, as long as you don't overdo it, a lower protein diet is not

harmful.

I'm sure your nephrologist can either provide some handouts or hook you up

with a renal dietician who can better direct you on this, if necessary.

Pierre

question

> Hi,

>

> Sorry if this is a repeat message. For some reason I can't see my

> post after 30 minutes.

>

> Is ACE, blood pressure medicine immu system suppression? If so, for

> IGAN patient with HBV (Hepitits B), this may cause the activation of

> HBV. Any replacement?

>

> Also, if kidney function is normal, eatting less protein (but

> enough), bean and passtium, will it help preserve kidney function?

>

> Thanks,

> fre

>

>

>

>

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Hi--

Are the angiotensin II drugs less " desirable " than ACE inhibitors?

i.e. are ACE inhibitor a first choice for some reason? My nephrologist

is switching me from Vasotec to Cozaar so I'm just wondering what the

difference is.

Also--yet another question I came up with of course after leaving her

office--my last test results show creatinine down (good), creatinine

clearance up (good) and proteinuria up (bad). Is that just a flukey

thing, or is there a reason that makes sense?

Last question--I'm wondering how much fish oil those of you taking it

are taking. My nephrologist is recommending 12 grams. Does that sound

like a lot?

> Hi Fre.

>

> The proteinuria reduction obtained by ACE inhibitors is not due to any

> immunosuppression. It happens only because of how the ACE inhibitors (and

> some other BP meds) affect the dynamics of blood flow within the glomeruli.

> There is no suppression of the immune system. If an ACE inhibitor causes

> problems in terms of intolerable side effects, yes, there are other drugs.

> First in line are close cousins to the ACEI's: the angiotensin II receptor

> blockers. And if that doesn't work either, there's also the older standbies,

> diltiazem CD and verapamil SR.

>

> As to your last question, there is no good evidence that a low protein diet

> does anything if kidney function is normal, and that's why nephrologists

> usually don't bother with it. There isn't even solid evidence that it does

> anything to delay dialysis even in more advanced renal failure (although in

> this case, there are other reasons to be on a low protein diet anyway). So,

> unfortunately, this is a question without an answer, and something which is

> still the subject of debate in the wonderful world of kidney disease.

>

> However, as long as you don't overdo it, a lower protein diet is not

> harmful.

>

> I'm sure your nephrologist can either provide some handouts or hook you up

> with a renal dietician who can better direct you on this, if necessary.

>

> Pierre

>

>

> question

>

>

> > Hi,

> >

> > Sorry if this is a repeat message. For some reason I can't see my

> > post after 30 minutes.

> >

> > Is ACE, blood pressure medicine immu system suppression? If so, for

> > IGAN patient with HBV (Hepitits B), this may cause the activation of

> > HBV. Any replacement?

> >

> > Also, if kidney function is normal, eatting less protein (but

> > enough), bean and passtium, will it help preserve kidney function?

> >

> > Thanks,

> > fre

> >

> >

> >

> >

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The ACE inhibitors have been around since the 80's. In North America, the

angiotensin II receptor blockers (ARB's) have only been on the market since

about late 1995. So there is more experience with the ACEIs, but the ARB's

have fewer side effects, and they appear to have the same beneficial effects

in the kidneys. The famous ACE inhibitor cough is much less likely with

ARB's. The reason they are so similar is that both interrupt the same

" renin-angiotensin system " that the kidneys use to raise blood pressure. The

ARB's act a little later in the process, but the end result seems to be

pretty much the same. I wouldn't exactly say that these drugs are

interchangeable (ACEI's have an additional effect on a hormone called

bradykinin which the ARB's don't), but they are as close as you can get. By

the way, both these classes of drugs are also popular in the cardiology

world.

As for your creatinine results, well, these things can happen. It's

impossible to explain much without knowing more about the circumstances and

the numbers. Fluctuations of up to 10% or so aren't unusual.

I don't take fish oil. Never have. So I'll leave that to someone who does.

However, I can say that 12 grams was the usual amount until recently, and

still is, but some take 6 grams now.

Pierre

Re: question

> Hi--

>

> Are the angiotensin II drugs less " desirable " than ACE inhibitors?

> i.e. are ACE inhibitor a first choice for some reason? My nephrologist

> is switching me from Vasotec to Cozaar so I'm just wondering what the

> difference is.

>

> Also--yet another question I came up with of course after leaving her

> office--my last test results show creatinine down (good), creatinine

> clearance up (good) and proteinuria up (bad). Is that just a flukey

> thing, or is there a reason that makes sense?

>

> Last question--I'm wondering how much fish oil those of you taking it

> are taking. My nephrologist is recommending 12 grams. Does that sound

> like a lot?

>

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  • 1 month later...
Guest guest

It's possible to spill a bit more blood in the urine with activity, protein

too. My guess would be that it's still better to be active though. Just the

same, I would mention it to his doctor.

Pierre

Question

> Is there a connection between activity level and urine color???

>

> My son, age 7, is a very active boy. When he is less active I have

> noticed his urine color to be more orange or fark yellow. When he is

> more active his urine is dark red, dark brown or black. Does anyone

> else have thiss same problem?

>

> Thanks

> _________________

>

> Mother if Hunter (age 7 IgAN)

>

> __________________________________________________

>

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  • 4 weeks later...
Guest guest

,

My fingers are also crossed for you. Good Luck!

Ladies, today my dh had a SA done, and i was wondering what exactly do they

look for? And what is considered a good sperm count?

Marla

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  • 3 weeks later...
Guest guest

Is there anyone who has had the surgery done & has had a problem carrying a

baby full term. I had 2 children before with no problem, but since I had the

surgery I have had to miscarriages. I have only been able to get pregnant

those 2 times in the last 2 1/2 yrs since I had the surgery. I was just

wondering if anyone else has had similar problems.

Earlene

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