Re: husband just diagnosed

August 1, 2004

Welcome to the group.

Many people who are eventually diagnosed with IgAN started out with some

microscopic blood being discovered in the urine during a routine medical or

when being looked at for something else.

Your husband's number are all pretty good - indicative of only very mild

IgAN. The protein number you want is in the urine, not the blood.

I wouldn't think there should be much concern about diet at this point. A

renal diet is for chronic renal insufficiency at 30% kidney function or

less, approximately. Your husband appears to be closer to 100% kidney

function. Still, with high blood pressure starting, it might not be a bad

idea to discuss with his doctor whether he should lower his sodium intake.

That can really help keep blood pressure under control.

As I mentioned in another message this morning, using a GFR calculator when

serum creatinine is within the normal range can be misleading without

looking at other things in his chart.

Pierre

spam: husband just diagnosed

> Here is my husband's story. In Dec, 2003 after six kids ranging in age

> from 2-22 yrs old and my health problems and our age (me 47, husband

> 51) we decided it was time for a vasectomy. The uroligist found

> microhematuria and my husband went through a cystoscope, kidney

> xray,and CT scan which showed a renal cyst (not cancer). After a

> follow up to the uro the blood was still there and sent to a nephro.

> A bx followed in July and here we are today with Igan- haas subclass 1

> whatever that means. My husband started on minimal bp meds (hctz) in

> Jan or Feb after seeing his Bp slowly climb during the last few years.

> He decided it was time to see the GP when it went over 140/90. His

> measured creatinine clearance is 86, serum creatinine is 1.2 and est

> gfr is around 70 by the calcultors i have used. HIs urinary protein is

> 180 and serum protein 6.9, BUN 18. HDL is low and LDL/HDL is high.

> Kind of annoyed when the GP did blood work knowing that there was

> blood in the urine (said lots of people had blood in their urine) and

> then told my husband his blood work was fine. Yes, nothing was out of

> normal range except for AGRAT but BUN, sodium, creatinine, and other

> things having to do with kidneys were at borderline amounts. Doesnt

> seem to be anything extraordinary about our nephro, and suggested no

> preventive measures until we asked about salt and protein and wondered

> if maybe a switch to a nephro interested in igan that is connected to

> a major universtiy in Chicago would be a good idea. Now i am trying

> to wade through info about diet, meds and such since my husband is

> more of a take it as it comes type person. Most of what I read is a

> diagnosis in younger people and also if anyone else is lucky enough to

> have a cyst along with igan. Been a wonderful year here- this and our

> 4 yr old hospitalized twice about a month apart with penicillin

> reaction and then emergency appendectomy. Sorry this has gotten

> extremely long.

>

August 1, 2004

Welcome to the group, I'm glad you found us. Your husbands labs look great.

Like Pierre already said the need for a special diet should come from your

doctor telling you he needs one. There are so many factors that play into diet

and the renal patient that no on-line source or book can tell you what your

husband needs to be doing. Only his doctor, knowing his history and labs, can

recommend something. And his recommendation may be " no changes for now " as his

values look good. With his b/p on the rise cutting down sodium may be something

you would want to ask the doctor about.

And remember IgAN diagnosis doesn't mean that he will reach end stage renal

failure, he can live his entire life out with only a few more lab tests and a

few extra pills to take. Only a small percentage of us will reach end stage,

many more live a full life with a few minor problems and nothing else.

Welcome again,

Amy

husband just diagnosed

Here is my husband's story. In Dec, 2003 after six kids ranging in age

from 2-22 yrs old and my health problems and our age (me 47, husband

51) we decided it was time for a vasectomy. The uroligist found

microhematuria and my husband went through a cystoscope, kidney

xray,and CT scan which showed a renal cyst (not cancer). After a

follow up to the uro the blood was still there and sent to a nephro.

A bx followed in July and here we are today with Igan- haas subclass 1

whatever that means. My husband started on minimal bp meds (hctz) in

Jan or Feb after seeing his Bp slowly climb during the last few years.

He decided it was time to see the GP when it went over 140/90. His

measured creatinine clearance is 86, serum creatinine is 1.2 and est

gfr is around 70 by the calcultors i have used. HIs urinary protein is

180 and serum protein 6.9, BUN 18. HDL is low and LDL/HDL is high.

Kind of annoyed when the GP did blood work knowing that there was

blood in the urine (said lots of people had blood in their urine) and

then told my husband his blood work was fine. Yes, nothing was out of

normal range except for AGRAT but BUN, sodium, creatinine, and other

things having to do with kidneys were at borderline amounts. Doesnt

seem to be anything extraordinary about our nephro, and suggested no

preventive measures until we asked about salt and protein and wondered

if maybe a switch to a nephro interested in igan that is connected to

a major universtiy in Chicago would be a good idea. Now i am trying

to wade through info about diet, meds and such since my husband is

more of a take it as it comes type person. Most of what I read is a

diagnosis in younger people and also if anyone else is lucky enough to

have a cyst along with igan. Been a wonderful year here- this and our

4 yr old hospitalized twice about a month apart with penicillin

reaction and then emergency appendectomy. Sorry this has gotten

extremely long.

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Thank you

August 1, 2004

Thanks for the response to my post. My husband, Bret, is supposed to

have his blood work repeated every 6 months, and is also scheduled to

see the urologist in Nov for followup, and luckily our insurance will

cover a complete physical and all related tests and that is due around

March next year, so I feel confident that if something starts going

awry it will be found quickly. I have been so thankful this year for

our good insurance coverage, and for drs that are waiving their copay

as a professional courtesy. God is watching over us. I do wish our

life insurance was in better shape. His whole life policy has

deteriorated and is no longer whole life but only until age 65 (Bret

is 51) and with young children to raise it is a concern. We tried to

get a higher amount of term insurance before the diagnosis but were

turned down and are condsidering not pursuing it and bankrolling the

premiums on our own. Any opinions on this?

Since I have had high BP for about 20 yrs the salt shaker stays on

the stove and I try to use as little as possible to cook with but am

going to try to use more low salt products. But retraining Bret's

tastes away from salty meats and snacks,etc. might be more difficult

to accomplish. He did have unsalted popcorn tonite! I guess the good

in this diagnosis is that he doesn't have cancer and that we are going

to make an effort of eating more healthy - good for my type 2

diabetes, which, I'm proud to say, the last few days has had very good

control. The dr did say that watching protein intake is alright,but I

don't plan to go overboard- more of watching serving sizes. I have

read that there are high quality and low quality protein sources, but

don't know what makes a protein high or low quality-any answers to

that. I know what high quality and low quality proteins are for

diabetes- is it the same for IgAN? I am hoping that my diabetic

cookbooks will do well as IgAn cookbooks.

I think I have become permanently attached to the computer over

the last several months trying to wade through medical info for Bret

and our 4 yr old that had the penicillin reaction. Prior to the biopsy

I had read most of the IgAN sites that have been understandable and

tried to read some that were not. Still have not been able to

interpret the meanings of the microscopy findings of the biopsy. Does

anyone know of a site for this that is written in plain English

instead of medical jargon? Or can someone who posts here tell me what

they mean? Anyone know anything about Haas classifications. I have

read about Lee's but not Haas.

Time to get some sleep. Betty

-- In iga-nephropathy , " Amy Griswold " <purr-fect@p...>

wrote:

> Welcome to the group, I'm glad you found us. Your husbands labs

look great. Like Pierre already said the need for a special diet

should come from your doctor telling you he needs one. There are so

many factors that play into diet and the renal patient that no on-line

source or book can tell you what your husband needs to be doing. Only

his doctor, knowing his history and labs, can recommend something.

And his recommendation may be " no changes for now " as his values look

good. With his b/p on the rise cutting down sodium may be something

you would want to ask the doctor about.

>

> And remember IgAN diagnosis doesn't mean that he will reach end

stage renal failure, he can live his entire life out with only a few

more lab tests and a few extra pills to take. Only a small percentage

of us will reach end stage, many more live a full life with a few

minor problems and nothing else.

>

> Welcome again,

> Amy

> husband just diagnosed