Re: I'm new... and looking for answers

November 30, 2004

Hi Kris,

A very warm welcome to you! Of course I am sorry you needed to find your way

here though.

The pain you are describing is referred to as flank pain, and is somewhat

common. Not everyone gets it, but it can range from mild pain to severe pain.

The good news is that your creatinine is low at 1.3, and that the majority of

people with IgAN, anywhere from 50-70% never do reach end stage but are

monitored with a fairly benign case of IgAN. I do hope that is the case with

you.

The flare-ups with a viral illness that you are describing are also common

with IgAN. But, interestingly enough, those who get visible blood with those

episodes actually have a better prognosis than those with only microscopic blood

that is not visible to the naked eye like I have. So, even though that can

be scary, it is an indication of a better prognosis.

The most important think you can do is to keep your BP in check and not let

it get elevated.

Please do not ever hesitate to ask any questions you may have because we are

here to provide support and education for those whose lives are impacted by

IgAN.

Welcome again Kris!

In a message dated 11/30/2004 7:30:02 PM Pacific Standard Time,

jkbattin@... writes:

>

> Hi everyone...

>

> My name is Kris, I am 36 years old and was just diagnosed with IGAN 2 weeks

> ago.

>

> I have been on high BP meds for about 2 years now, and have had a small

> amount of blood in my urine for about the same amount of time. But, about 5

> months ago, I ended up getting a really bad virus and spent the entire weekend

in

> bed. By the following Monday, I could see a very obvious spillage of blood

> in my urine and assumed that it must have been another UTI, (have lots of

> them) and went to the doctor. However, there was no infection, but plenty of

> blood and protien. Well, it took this long to finally have a final diagnosis

> of IGAN and see a nephrologist. I might add, I am from Montana, and getting a

> good specialist around here is almost as difficult as finding a kangaroo in

> our area!!

>

> Well, anyways, I don't know all of the details, except that my creatinin

> level is at 1.3, I believe, and I am being treated at this time with increased

> BP meds, and diet. I am having to have blood work done regularly and the

> results are being sent to the nephrologist. I have read a few of the messages

> from the past couple of days, and I realize that my 'stage' is nowhere near as

> advanced as many of yours is. But I am hoping that maybe, through reading

> some of the e-mails I will be able to get some answers to what I am

> experiencing!!

>

> I hope that you all have a good day, and I hope that I don't become a pain

> in the 'you know where' with questions!! Any experiences anyone would

> like to share would be welcomed!!!! I have been experiencing alot of

backaches

> that the doctors have said were due to swelling in the kidney... haven't had

> a biopsy yet though... as my nephrologist is concerned of the risks.

>

> Hugs,

> Kris

November 30, 2004

Hi Kris,

Welcome to the group, I'm glad you found us but sorry you had reason to

look. Just because you aren't that far along as some of us doesn't mean you

can't contribute or ask as many questions as you'd like to. ) We are at all

levels here so join in whenever. You might want to check out our sister site

written by Pierre at www.igan.ca There is loads of info on there in easy to

understand terms...not the medical jargon stuff you find on most sites.

I've been thru Montana...I understand exactly what you mean about it being

hard to find..well...anything! I hope your neph is fairly close to you so you

don't have to drive forever for appointments. I live in rural Colorado just

East of Colorado Springs. I love the area but the drive time for doctors can

get tiresome if you end up with back to back appointments.

It's also not too unusual to not have a biopsy if you are still in the early

stages. There are risks involved with a biopsy and your treatment wouldn't

change if they did one. You are on the basic treatment for IgAN...blood

pressure control and diet. Since there is no 'miracle' drug out there to cure

us the best we can do is stay as healthy as we can for as long as we can.

Keeping your b/p under control is one of the things we can do to prolong the

life of our kidneys.

Welcome again!

Amy G.

I'm new... and looking for answers

Hi everyone...

My name is Kris, I am 36 years old and was just diagnosed with IGAN 2 weeks

ago.

I have been on high BP meds for about 2 years now, and have had a small amount

of blood in my urine for about the same amount of time. But, about 5 months

ago, I ended up getting a really bad virus and spent the entire weekend in bed.

By the following Monday, I could see a very obvious spillage of blood in my

urine and assumed that it must have been another UTI, (have lots of them) and

went to the doctor. However, there was no infection, but plenty of blood and

protien. Well, it took this long to finally have a final diagnosis of IGAN and

see a nephrologist. I might add, I am from Montana, and getting a good

specialist around here is almost as difficult as finding a kangaroo in our

area!!

Well, anyways, I don't know all of the details, except that my creatinin level

is at 1.3, I believe, and I am being treated at this time with increased BP

meds, and diet. I am having to have blood work done regularly and the results

are being sent to the nephrologist. I have read a few of the messages from the

past couple of days, and I realize that my 'stage' is nowhere near as advanced

as many of yours is. But I am hoping that maybe, through reading some of the

e-mails I will be able to get some answers to what I am experiencing!!

I hope that you all have a good day, and I hope that I don't become a pain in

the 'you know where' with questions!! Any experiences anyone would like to

share would be welcomed!!!! I have been experiencing alot of backaches that the

doctors have said were due to swelling in the kidney... haven't had a biopsy

yet though... as my nephrologist is concerned of the risks.

Hugs,

Kris

December 1, 2004

Hi Kris,

It sounds like my experience with igan is very similar to yours. I'm 38 and

have had blood in my urine for 2 years. I also had a terrible respiratory

infection last winter where I had visible blood for a long time (scared me to

death!). That virus bumped up my creatinine from .8 to 1.0 where it has stayed.

Now I'm just trying to think of ways to get through the winter without

getting sick. I asked my neph for advice and he said there isn't much you can

do

since they are viruses. My neph was extremely encouraging to me though about

the igan. He said there is a very good chance that it will never progress to

end stage. My neph didn't do a biopsy either and just wants me to stay on bp

meds because they really helped with my protein spill. I was completely

panic-stricken when I got diagnosed and this group has really helped me to learn

so

much and calm down and count my blessings. I'm glad you found this group.

Take care. Cheryl

December 1, 2004

Not much I can add to what others have already said, but, welcome to the

group Kris.

Pierre

I'm new... and looking for answers

>

> Hi everyone...

>

> My name is Kris, I am 36 years old and was just diagnosed with IGAN 2

weeks ago.

>

> I have been on high BP meds for about 2 years now, and have had a small

amount of blood in my urine for about the same amount of time. But, about 5

months ago, I ended up getting a really bad virus and spent the entire

weekend in bed. By the following Monday, I could see a very obvious

spillage of blood in my urine and assumed that it must have been another

UTI, (have lots of them) and went to the doctor. However, there was no

infection, but plenty of blood and protien. Well, it took this long to

finally have a final diagnosis of IGAN and see a nephrologist. I might add,

I am from Montana, and getting a good specialist around here is almost as

difficult as finding a kangaroo in our area!!

>

> Well, anyways, I don't know all of the details, except that my creatinin

level is at 1.3, I believe, and I am being treated at this time with

increased BP meds, and diet. I am having to have blood work done regularly

and the results are being sent to the nephrologist. I have read a few of

the messages from the past couple of days, and I realize that my 'stage' is

nowhere near as advanced as many of yours is. But I am hoping that maybe,

through reading some of the e-mails I will be able to get some answers to

what I am experiencing!!

>

> I hope that you all have a good day, and I hope that I don't become a pain

in the 'you know where' with questions!! Any experiences anyone would

like to share would be welcomed!!!! I have been experiencing alot of

backaches that the doctors have said were due to swelling in the kidney...

haven't had a biopsy yet though... as my nephrologist is concerned of the

risks.

>

> Hugs,

> Kris

>

December 2, 2004

I love it! " ...getting a good specialist around here is almost as

difficult as finding a kangaroo in our area!!... "

I agree. I had a similar issue at first. When I first went to the emergency

room with blood in my urine, the docs there had no idea what was up. I'm sure

they had nephs there, but either they didn't know or weren't asked about it.

The ER people just ran a bunch of tests and then sent me home. They are like...

" yep, you got blood in your urine. " I'm like... " uh thanks, I know. "

To be fair, they did set me up with an appointment with a good neph, but still.

I found the whole experience really bizarre, and kind of scary since I was a kid

back then and didn't like that the docs didn't know what was wrong with me.

Anyway, just my random story. Welcome to the list. Hope you enjoy it as much

as I have. The list I mean, not the IGAN. :-)

Chelle