Re: new to the group!

September 2, 2004

Hi

Well, you know, you should really ask your nephrologist, but most kidney

patients feel they aren't being seen often enough. So, if your neph wants to do

blood and/or urine work in 4 months, there must be a reason. I had my IgAN for

over 20 years, and most of that time, I was only seen once a year, or not at

all. By the time I was being seen twice a year, I had 30-50% kidney function,

but I was very stable because I didn't have a problem with proteinuria very much

(it was always moderate in my case). Under 30%, which was 3 years ago (I started

dialysis 2 years ago), I was seen every 3 months and then every month.

It's a good thing to carry on with normal life, but, denial isn't a good thing

if you are putting yourself at any increased risk for end-stage renal failure. I

wasn't at any risk of anything at all for the first 15 years, so, but, yes, a

lot can happen in one year in some cases. Read up on it on

www.igan.ca<http://www.igan.ca/> (I'm the author).

After I was told I had blood in my urine 25 years ago, I also attributed it to

athletic activities. Nothing else was happening, so there really was no reason

to panic in my case, at that time. I really had no limitations at all on my

life, until I started having high blood pressure about 10 years later (before

this was found, I was getting short of breath very easily). But everyone's

different, and only your nephrologist can really advise you as to what you can

expect and when. If everything else is stable (which mostly means no heavy

proteinuria, and you don't have rapidly-progressing kidney disease), the most

risk is probably from high blood pressure. Mine started when I had better than

50% kidney function, so, it can start fairly early on.

Good luck.

Pierre

new to the group!

hey all,

i'm new to this group. my doctor has me taking fish oil vitamins-

about 4 a day and this other pill called anapril or something like

that- 5mg.

i've been really frusterated by this whole kidney thing. it's just

been an inconvience. it sux. it's been going on for about 4 years.

when i first saw the blood it scared the f@ck<mailto:f@ck> out of me. i kind

of

let it go for a while. it's weird part of me wants to still be in

denial about it-- blame it on my period or athletics or whatever but

i can't because the protein is there and it has been for a long time.

about a year ago i went and saw a nephrologist who was little help

but a few days ago i saw one who was really cool. i feel like he

actually has some answers and knows something about kidneys. he was

the one who told me i probably had iga. another thing is that i'm

leaving to ecuador tomorrow and i really like to travel and this

kidney thing is a little bit cramping my style. i'm going to be in a

remote villiage in the andes mountians for a year but hopefully i

will make it out to get the urine tests that my doctor wants me to

get in about 4 months. and i ask myself- is it really important to

get the tests. how bad can things really get in a year?

hmm. what else? i'm really happy that i found this community. it

seems really huge which is a bit overwhelming but hopefully i will

get something out of it. i'm happy that this new doctor finally put

a name to what i have. it feels good on one hand because i don't

feel like i'm in the dark anymore but i also feel like i have to take

it more seriously- like i can't ignore it anymore.

ok i just looked it up and the drug i'm taking is called enalapril.

i think i'm not supposed to take asparin with it? does anyone know

if this is true.

i'm 24 and my name is brandy.

oh and another thing. my experience with my last nephrologist was

really frusterating and traumatic. i really didn't like him or his

office staff. he was really rude and vague and didn't seem to know

that much. i left his office several times crying and scared. he

just kept on having me take test after test and didn't have any

answers or ideas. it sucked. his secretary told me that i was there

because i had abnormal labs and that i had a problem. the way she

said it was really rude. the new one that i have is pretty cool. i

just don't know when i'm going to see him because i'm going to be

gone.

-brandy

September 2, 2004

That is not a bad idea , especially if you are feeling overwhelmed and

trying to absorb lots of information all at once.

In a message dated 9/2/2004 10:48:55 AM Pacific Daylight Time,

sneekersmom@... writes:

>

> I found it REALLY helpful to have some one else come to my appointments with

> me. That way if you don't think to ask a question of the doctor, they can

> remind you. I also liked being able to hear from the other person what they

> heard the Dr say to me regarding test results etc... Some times he did answer

> my questions, but I was so overwhelmed that I couldn't hear it.

>

> It is also important to have the " Right " person come with you.... my husband

> tends to hear the " Pollyanna " version. (everything is fine)

> My mom, surprisingly to me, ended up being the best person to sit in. She

> takes short notes and reminds me to ask that question I have been wondering

out

> loud about for the last month.

>

September 2, 2004

Hi ,

Welcome to the group. I am glad you found a place where you can be

supported. You have already had some excellent answers, so I won't repeat the

advise

already given.

The best thing is to know your levels, be aware of your body, but at the same

time live each day to the fullest extent possible. I understand how

overwhelming and frightening it can be at first, but as Amy told you, IgAN is

fairly

benign the majority of the time. I have had it since I was a teenager, and now

in my 40's I am still not yet on dialysis.

It is great that you can travel and I hope your experience in Ecuador is very

enriching.

Welcome again.

In a message dated 9/2/2004 6:25:26 AM Pacific Daylight Time,

fencezine@... writes:

> hey all,

>

> i'm new to this group. my doctor has me taking fish oil vitamins-

> about 4 a day and this other pill called anapril or something like

> that- 5mg.

>

> i've been really frusterated by this whole kidney thing. it's just

> been an inconvience. it sux. it's been going on for about 4 years.

> when i first saw the blood it scared the f@ck out of me. i kind of

> let it go for a while. it's weird part of me wants to still be in

> denial about it-- blame it on my period or athletics or whatever but

> i can't because the protein is there and it has been for a long time.

>

> about a year ago i went and saw a nephrologist who was little help

> but a few days ago i saw one who was really cool. i feel like he

> actually has some answers and knows something about kidneys. he was

> the one who told me i probably had iga. another thing is that i'm

> leaving to ecuador tomorrow and i really like to travel and this

> kidney thing is a little bit cramping my style. i'm going to be in a

> remote villiage in the andes mountians for a year but hopefully i

> will make it out to get the urine tests that my doctor wants me to

> get in about 4 months. and i ask myself- is it really important to

> get the tests. how bad can things really get in a year?

>

> hmm. what else? i'm really happy that i found this community. it

> seems really huge which is a bit overwhelming but hopefully i will

> get something out of it. i'm happy that this new doctor finally put

> a name to what i have. it feels good on one hand because i don't

> feel like i'm in the dark anymore but i also feel like i have to take

> it more seriously- like i can't ignore it anymore.

>

> ok i just looked it up and the drug i'm taking is called enalapril.

> i think i'm not supposed to take asparin with it? does anyone know

> if this is true.

>

> i'm 24 and my name is brandy.

>

> oh and another thing. my experience with my last nephrologist was

> really frusterating and traumatic. i really didn't like him or his

> office staff. he was really rude and vague and didn't seem to know

> that much. i left his office several times crying and scared. he

> just kept on having me take test after test and didn't have any

> answers or ideas. it sucked. his secretary told me that i was there

> because i had abnormal labs and that i had a problem. the way she

> said it was really rude. the new one that i have is pretty cool. i

> just don't know when i'm going to see him because i'm going to be

> gone.

>

> -brandy

September 2, 2004

Hi ,

I just had to commend you on an excellent post to . Great job :-)

In a message dated 9/2/2004 9:39:54 AM Pacific Daylight Time,

sarahandderek@... writes:

> Hello,

> Living in denial may be tempting, I know, but it won't improve your

> condition. I am

> sorry you had a bad experience with your previous nephrologist, but

> fortunately you

> say you've found one who is helpful and informative. As Pierre said, if your

>

> nephrologist wants labs done at certain times, do your best to get them

> done. Being

> away and in the Andes will make this more difficult, but not impossible.

> Have you

> spoken with your doctor about your trip, he may be able to make an inquiry

> or two

> about where you can go to get the labs done.

>

> As for your question about aspirin, confirm this with your doctor, but you

> should

> avoid taking aspirin and ibuprofin regardless of what other meds you are on.

> Both are

> hard on the kidneys. Again, confirm this with your doctor, and you should

> begin

> asking your doctor what things you can and cannot take. If you are inclined

> to take

> cold medicine, be careful as some contain aspirin or ibuprofin.

>

> Finding out you have to change your life for something you can't feel or

> see, like

> kidney disease, when in your twenties is hard to swallow. I understand.

> Don't stop

> living your life, it's just that now you have to think of your health in a

> way most don't

> at your age, you have to be conscious about it. I believe that none of us

> here take for

> granted the health we have, ironicallly with having IgAN I think that's one

> gift we've all

> been given.

>

> peace,

>

September 2, 2004

Hello,

Living in denial may be tempting, I know, but it won't improve your condition. I

am

sorry you had a bad experience with your previous nephrologist, but fortunately

you

say you've found one who is helpful and informative. As Pierre said, if your

nephrologist wants labs done at certain times, do your best to get them done.

Being

away and in the Andes will make this more difficult, but not impossible. Have

you

spoken with your doctor about your trip, he may be able to make an inquiry or

two

about where you can go to get the labs done.

As for your question about aspirin, confirm this with your doctor, but you

should

avoid taking aspirin and ibuprofin regardless of what other meds you are on.

Both are

hard on the kidneys. Again, confirm this with your doctor, and you should begin

asking your doctor what things you can and cannot take. If you are inclined to

take

cold medicine, be careful as some contain aspirin or ibuprofin.

Finding out you have to change your life for something you can't feel or see,

like

kidney disease, when in your twenties is hard to swallow. I understand. Don't

stop

living your life, it's just that now you have to think of your health in a way

most don't

at your age, you have to be conscious about it. I believe that none of us here

take for

granted the health we have, ironicallly with having IgAN I think that's one gift

we've all

been given.

peace,

September 2, 2004

,

Welcome to the group I'm glad you found us. Dealing with this disease does

suck....I'll fully agree with that. However you need to take care of yourself

to avoid sliding down into full renal failure any faster. Most of us will NEVER

reach end stage renal failure, only 30-50% of IgAN patients ever end up needing

dialysis or transplant. For most of us the disease is very slow moving taking

20+ years to land us with little function left. However, for some of us, IgAN

can be a very slippery slope. You want to know how much can happen in a year??

How about in 6 months with the aggressive form of IgAN...I went from normal

kidney function to 45% kidney function in just under 6 months. I'm not trying

to scare you but a lot can happen in a short period of time depending on what

type of IgAN you are dealing with. If your doctor is saying tests in 4 months

it's unlikely that you have the aggressive form of the disease (I was having

blood tests and urine tests every other week early on) but only your neph can

say for sure. Do you know what your labs look like? How is your serum

creatinine level? Are you spilling a large amount of protein in your urine?

As far as pain killers go aspirin and others like Motrin are not recommended

for kidney patients as they are very hard on the kidneys. Check with your neph

about what is safe to take along with the other drugs you are on. Usually

Tylenol is o.k. for occasional use. You may also want to pick up a blood

pressure monitor so you can keep an eye on your b/p while you are away in the

mountains. Just a weekly check to make sure it's not getting high might be

prudent.

It sounds like you lead a very active life and there really is no reason you

cannot continue with that. You just have to deal with a few more lab tests and

doctors visits a year to make sure you stay as healthy as you possibly

can....and that's well worth the trouble in the end. Have a wonderful time in

Ecuador and welcome again to the group.

Amy