Re: my firt mesage please read

[Guest guest]

Welcome to the group hakan. I believe you are our first member from Turkey.

I will try to answer your questions one by one:

1) will a %100 have to get new kidneys?

No, not necessarily. You may at some point need dialysis or kidney

transplant, but it's not possible to no when that might be without more

information.

2) if yes aproksimitly how much time do ý have more?

I've had 24 years and am still not on dialysis. I will be in about a year

though. It's even hard for nephrologists to predict this, so it would not be

possible for me to offer a prediction.

3) can ý exersize? can i smoke? can i drink alcohol? can i have sex?

Assuming you aren't in advanced renal failure and close to needing dialysis

(which you probably are not), you can exercise (some might say it shouldn't

be very rough exercise like rugby, running, or things like that - but most

nephrologists encourage exercise. It's good for the circulation, and we IgAN

patients have to take better care of our cardiovascular system than most

people). No to smoking, because smoking directly affects the tiny filters in

the kidneys. Alcohol is ok in moderation (like one glass of wine or beer per

day). No restrictions on sex (it's great exercise : )

4) will i be able to drive motorbike (as a life style)?

Yes.

5) can i eat any thing i want?

Well, this depends on how advanced your kidney failure is, but, in general,

for IgAN, there are no restrictions, unless your doctor tells you there are.

If you have high blood pressure, it might help if you stop eating salty

foods.

6) will my kidneys stop working sudenly or slowly slowly?

Probably slowly, if you have already had it for 8 years. It's hard to tell

without knowing anything more about your lab results over the years.

7) is there any changse to cure it?

Unfortunately, no. But good control of blood pressure with the right

medications (ACE inhibitors, angiotensin II receptor blockers) may help to

slow it down. Prednisone will help if you have a lot of protein in your

urine. But nothing will cure it. There is always hope that it will only

progress very slowly though, and it can remain stable for many years. There

are some other drugs that are used for people who have rapidly-progressing

IgAN (immune system suppressants).

Your English is fine. If you have any other questions or comments, don't

hesitate to ask.

If you want to, you can browse or search through our past messages from the

home page. There's a little box where you enter the word you want to search

for. There is also information you can find in our LINKS section. Just click

on Links, on the left side of the home page, and it will take you there.

I hope this helps to answer your questions.

Pierre

Canada

my firt mesage please read

>

>

> hi ;

> I am hakan from Turkey. I am 24(m) years old . ý have iga for 8 years(time

> we learnd abouth it) firt of all sory for my bad english (it is not my

first

> language)

> I am using predisone for 1.5 years. ý have severel qestions i want to now

> which i blieve my doctor is not telling the truth.

> ***will a %100 have to get new kidneys?

> ***if yes aproksimitly how much time do ý have more?

> ***can ý exersize? can i smoke? can i drink alcohol? can i have

sex?

> will i be able to drive motorbike (as a life style)? can i eat any thing i

> want?

> ***will my kidneys stop working sudenly or slowly slowly?

> ***is there any changse to cure it?

> I gess if i don't force myself to stop writing and asking it wont end

..hope

> i didn't bore any of u reading this thing.hope to get maybe not all but

some

> of my answers. this also is the first time i am being involved in a mail

> group so if some of my questions are asked and anwered before maybe u can

> tell me how i can reach them (past mails send to the group ) Ý really hope

> to get well(all to get well) couse i hate the life i am sharing with this

> ......ing iga

> tkans for sparing time for me bai bai

>

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

>

>

[Guest guest]

Hello Hakan! and welcome to the group.

I'm 22 years old and I aslo have IgAN.

According to what you wrote, I think you are doing very well, I don't

see why you should not have a normal life.

I will tell you about my situation, you might feel better.

I have a 50% function in my kidneys in other words I have 1 kidney

worknig. I have aggresive high blood pressure, I have to take

medication for my high blood pressure, I have a special diet, I can

not eat everything I want, and due to my high blood pressure I have a

problem with my heart. I don't smoke or drink because that's a choice

I made before I had IgAN. According to my doctor, I could drink

occasionally, so if I can, why not you! But remember " occasionally "

I don't smoke(high blood pressure) but it doesn't hurt me(no offense)

besides I think smoking is dirty.

I have a very normal life, I go to school, I go out to clubs, I love

taking road trips in my country(USA) and take pictures of everthing I

see, I love hiking... so if I can do all this, why not you can ride

motorbike?

Some days I don't feel good, but that's because I have other

complications, but that doesn't stop me for doing things, if you

throw yourself to a bed and not do anything, trust me you will get

worst, but if you go out and live your life you will be fine. The

only differences between some like us and a person who is not sick

it's that we have to pay a little more attention to our health, but

happens to any one who has any kind of disease. And about sex, I

agree with Pierre, there is not a better exercise than sex!

The bad side about IgAN it's that there is no cure, but your kidneys

will not stop working tomorrow, It takes years for the kidneys to

stop working AND before that happens, there is a process.

Don't fell bad, you can have a normal life, you can marry, have kids,

all you want, IgAN will not stop you unless you let that happen.

So think about that!!

Jeimy

USA

>

>

> hi ;

> I am hakan from Turkey. I am 24(m) years old . ý have iga for 8

years(time

> we learnd abouth it) firt of all sory for my bad english (it is not

my first

> language)

> I am using predisone for 1.5 years. ý have severel qestions i want

to now

> which i blieve my doctor is not telling the truth.

> ***will a %100 have to get new kidneys?

> ***if yes aproksimitly how much time do ý have more?

> ***can ý exersize? can i smoke? can i drink alcohol? can i

have sex?

> will i be able to drive motorbike (as a life style)? can i eat any

thing i

> want?

> ***will my kidneys stop working sudenly or slowly slowly?

> ***is there any changse to cure it?

> I gess if i don't force myself to stop writing and asking it wont

end .hope

> i didn't bore any of u reading this thing.hope to get maybe not all

but some

> of my answers. this also is the first time i am being involved in a

mail

> group so if some of my questions are asked and anwered before maybe

u can

> tell me how i can reach them (past mails send to the group ) Ý

really hope

> to get well(all to get well) couse i hate the life i am sharing

with this

> ......ing iga

> tkans for sparing time for me bai bai

>

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device:

http://mobile.msn.com

[Guest guest]

i really din't expeckt this much of help thank u so much .iLL try to keep in

touch with the group.(altough it really makes my sykology (sory for the

pronanciation thanks again

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[Guest guest]

every ine i read from your reply made me feel better and better but i am not

sure of the pink drowing u made abauth marying. there haven't been any one i

tought of marying but i'm not sure i can ask anyone (who will be the most i

care and think of ) to get a car wich will crash one day thats not fair

.. mary with me but one day (maybe 1 yaer maybe 5 or 10 yaers later) i won't

be able to work normally, maybe make chilren or maybe won't be able to work

hard enoufgh to reach the things we want (i am an architeckt and it is

usually a hard work).

Ýn a subjeckt mostly based on my (maybe more iga nep... think so) sycology

with my second language (english) i really can't express my feelings weell .

Am i being so pesimistic (thinking the bad sides and making the problem

biger in my mind) or does most people share the sycological and phsical

problems?

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[Guest guest]

I think you are being too pessimistic. I married 22 years ago, after

abnormal urine was first discovered. I had two children, one of which is an

adult now, and the other soon will be. They don't have any kidney problems I

know of. I don't think IgAN should stop anyone from living a normal life.

Maybe one day you will need dialysis, but, maybe tomorrow you will get run

over by a taxicab (I hope not, though). So, may as well live life as it

comes.

Pierre

Re: Re: my firt mesage please read

> every ine i read from your reply made me feel better and better but i am

not

> sure of the pink drowing u made abauth marying. there haven't been any one

i

> tought of marying but i'm not sure i can ask anyone (who will be the most

i

> care and think of ) to get a car wich will crash one day thats not

fair

> . mary with me but one day (maybe 1 yaer maybe 5 or 10 yaers later) i

won't

> be able to work normally, maybe make chilren or maybe won't be able to

work

> hard enoufgh to reach the things we want (i am an architeckt and it is

> usually a hard work).

> Ýn a subjeckt mostly based on my (maybe more iga nep... think so) sycology

> with my second language (english) i really can't express my feelings weell

..

> Am i being so pesimistic (thinking the bad sides and making the problem

> biger in my mind) or does most people share the sycological and phsical

> problems?

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

>

>

[Guest guest]

Hakan

I was trying to let you see that compared to other people out there

who are more sick because of IgAN you are doing pretty good.

I was just diagnosed a year ago and I already have a 50% damage in my

kidneys. You been sick for 8 years and you don't even have high blood

pressure. That says a lot more than you think!

I'm just 22 years old(I'm a girl) and I was already told that if I

ever have kids my kidneys will get more damage and because there is a

50% damage already it's most likely that I will be in dialysis.

I don't want to be in dialysis, there is a lot of things that I want

to do before that.

And also think about those who are already in dialysis, Do you think

they are having a great time? I volunteer in a hospital with patients

who are in dislysis, and to me, they don't look that excited about

dialysis.

Look if you are upset because of your career, I was in the military

with an excellent job, a job that I always wanted to do since a have

memory, but because of my IgAN I can't dot it, so what!! look to the

other side and find something else to do.

I think you are very pessimistic about everything, You right now have

a better quality of life than me and many others, Why you can have a

normal life? you are not in a wheelchair, you are not blind, you

don't have a mental illness, in fact even people that have this

dissabilities do live a normal life as much as they can, them why not

you? Hey it might be very difficult to be an athlete when you have

IgAN, but I don't why not you can do the rest!!

Jeimy

> every ine i read from your reply made me feel better and better but

i am not

> sure of the pink drowing u made abauth marying. there haven't been

any one i

> tought of marying but i'm not sure i can ask anyone (who will be

the most i

> care and think of ) to get a car wich will crash one day thats

not fair

> . mary with me but one day (maybe 1 yaer maybe 5 or 10 yaers later)

i won't

> be able to work normally, maybe make chilren or maybe won't be able

to work

> hard enoufgh to reach the things we want (i am an architeckt and it

is

> usually a hard work).

> Ýn a subjeckt mostly based on my (maybe more iga nep... think so)

sycology

> with my second language (english) i really can't express my

feelings weell .

> Am i being so pesimistic (thinking the bad sides and making the

problem

> biger in my mind) or does most people share the sycological and

phsical

> problems?

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device:

http://mobile.msn.com