Re: Hi Im new to the group

[Guest guest]

Hi Amy

My Nephrologist hasn't gotten my test back yet, I just saw him

Thursday, so I don't know my levels. And no, He hasn't given me a

biopsy,, which by what I've read on the net is normal protocol.

His exact words were " If I gave you a biopsy, I would treat you just

as I do now, " , which of course confuses me. I don't know why he is

waiting. He said when I showed enough protein, this is when I saw him

in 2002 , that he would give me the biopsy. To be honest, this

all " not knowing " causes me a great deal of stress. My test in 2002

showed low bun,low rbc,high wbc and no albumin. Its a wait and see

thing for sure, it seems., I asked my GP to refer me to another

Nephrologist, and in this area, he is the head of the other kidney

doctors so,, what can I do, but wait. And try to educate myself about

this, Which he is so definate, that I have. He said also, that by the

color of the blood , he knew it was from the kidney, and the fact

also that I had had all the Uro tests that were negative. He is sure

I have it. this is why I had said earlier I was in a bit of denial

about it. I didn't believe him when I first went to see him,, but it

was somewhat of an answer to the chronic hematuria since 1995.

thanks for your reply

Sandy

> Welcome to the group Sandy, I'm glad you found us. There is a

bunch of easy to follow info on our sister website at www.igan.ca Our

founder Pierre has done a wonderful job making the site easy to

follow and find answers on.

>

> Do you know what your creatinine clearance or serum creatinine

levels are? Did you have a biopsy to confirm IgAN? Just curious as

a cat... I hope they are able to bring your b/p under better

control. High b/p in itself will damage the kidneys further so it's

in your best interest to try and get it as low as possible.

>

> Feel free to ask away with questions. This group is wonderful for

finding answers or for just plain ol' daily support.

> Welcome again,

> Amy

> Hi Im new to the group

>

>

> Hello,, Im new here,, Just found this group today,,

> I looked half the night trying to find, a kidney disease

website,,

> posted in another one and a lady contacted me and said there is

one

> for IgAN,, so im so glad to find you all,,

> I was diagnosed in 2002,, first my doctor said, you definately

have

> glomerulonephritis,, and Im sure you have IgNA, so for awhile I

was

> in denial and didnt research as I should have,, I had a bad ecoli

> infection in May of this year,that has lasted until now and my GP

> made me go back to my kidney doctor,, so, I went and now it seems

I

> have a lot of catching up to do on research about it,, I have had

> constant high blood pressure for 3 years, its still high with

meds,

> altrace and Hct. for swelling ,,which in the summer months is

very

> uncomfortable to say the least,, one good thing,, Im not showing

much

> protein in my urine,, the other side of it is,, Ive had hematuria

in

> my urine every time I was checked since 1995,, and the hematuria

went

> macroscopic in 2002 which lead to my kidney doctors diagnosis,,

so

> I'm ready to learn what I can about this,,

>

> good to meet you,,Sandy

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

[Guest guest]

Hi Sandy,

I was diagnosed a few months ago and I was really frustrated that my neph

wouldn't do a biopsy either. He told me that he wanted to follow my labs before

he did a biopsy because of the slight risk involved and the fact that it

wouldn't change his treatment of me (which right now is only bp meds). The

waiting

and not knowing can be hard, but he said he was almost certain that I have

igan, so I'm trusting him. I was also in denial and just didn't want to deal

with this diagnosis, but now I'm feeling better after doing a lot of research on

it and being part of this group. It just takes some time to sort it all out.

Take care of yourself.

Cheryl

[Guest guest]

Hi Cheryl,

When you are diagnosed with a chronic illness, it is a loss of your

expectation of good health. As with any loss, there are stages of grief you go

through, and they are:

Denial, anger, bargaining, depression then finally acceptance. So, the

denial you are experiencing is really a normal part of mourning the loss of your

good health. By the way, it is not unusual to go through these stages multiple

times over the course of progression.

As a side note, denial was always my favorite stage, and one I am SO good at

:-)

And you are right, it does just take some time to sort it all out.

In a message dated 8/14/2004 7:46:03 AM Pacific Daylight Time,

Chucktkn@... writes:

> I was also in denial and just didn't want to deal

> with this diagnosis, but now I'm feeling better after doing a lot of

> research on

> it and being part of this group. It just takes some time to sort it all

> out.

> Take care of yourself.

> Cheryl

>

[Guest guest]

Hi Sandy

I wouldn't exactly say that a biopsy is " standard protocol " . It may be

useful to do one at some point (usually when there's a certain level of

proteinuria), but the idea that a biopsy is needed right away is really

debatable, and I think your nephrologist's opinion on this is as valid as

any other. In a way, I would be happy if my IgAN was so mild that whether or

not to do a biopsy was still debatable. Mine was 16 years after my symptoms

first appeared, and at the time, it wouldn't have changed the treatment at

all. On the other hand, when my nephrologist did decide it was time, I was

glad to finally know exactly what kidney disease I had.

Pierre

Hi Im new to the group

> >

> >

> > Hello,, Im new here,, Just found this group today,,

> > I looked half the night trying to find, a kidney disease

> website,,

> > posted in another one and a lady contacted me and said there is

> one

> > for IgAN,, so im so glad to find you all,,

> > I was diagnosed in 2002,, first my doctor said, you definately

> have

> > glomerulonephritis,, and Im sure you have IgNA, so for awhile I

> was

> > in denial and didnt research as I should have,, I had a bad ecoli

> > infection in May of this year,that has lasted until now and my GP

> > made me go back to my kidney doctor,, so, I went and now it seems

> I

> > have a lot of catching up to do on research about it,, I have had

> > constant high blood pressure for 3 years, its still high with

> meds,

> > altrace and Hct. for swelling ,,which in the summer months is

> very

> > uncomfortable to say the least,, one good thing,, Im not showing

> much

> > protein in my urine,, the other side of it is,, Ive had hematuria

> in

> > my urine every time I was checked since 1995,, and the hematuria

> went

> > macroscopic in 2002 which lead to my kidney doctors diagnosis,,

> so

> > I'm ready to learn what I can about this,,

> >

> > good to meet you,,Sandy

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> >

> > To unsubcribe via email,

> > iga-nephropathy-unsubscribe

> > Visit our companion website at www.igan.ca. The site is entirely

> supported by donations. If you would like to help, go to:

> > http://www.igan.ca/id62.htm

> >

> > Thank you

> >

> >

> >