RE: Thank you for being here for me

April 12, 2003

Hi Aaran,

Your email really touched me! I think you have it exactly right when you say

the main prerequisite is to not dwell too much on the fact that you have

IgAN, and just really enjoy each day. I often post what we should receive

each day as a blessing and live each one to the fullest!

You are in great company in Australia. We have a number of members there in

fact. It really does warm my heart that you do feel the support which we

intend here on this site. This is really an amazing group of people here,

and definitely one of the blessings of having IgAN. Without it, my life

would not have the richness of so many wonderful friends all over the world!

It is truly the members who make this group as wonderful as it is, and I am

glad you found us and are part of the group.

take care,

April 12, 2003

Arran,

I think you are right about the blessing being having this for many years and

not knowing. The more tests I go in for and the more I know the more scared

I get.

Thank you for the post.

You will be getting a postcard from sunny and warm (today at least-the end of

the week holds snow) Maple Grove, MN.

Dana

In a message dated 4/12/03 12:46:54 PM Central Daylight Time,

asnimrod2@... writes:

<< Dear everyone,

You are all a god send. I know I will get to know you all a little

more over the months and years to come.

I listen to advice from everyone, take some some leave some but most

importantly leave feeling that there is light at the end of this long

dark journey I have embarked on and having learnt about I.G.A and

probably a little more about my self.

There are times when the old demons take over, usually when my feet

swell up, but then I realise that maybe I am lucky to find that I

have had IGA for a long time but didn't know about it. It is so true

what you don't know don't hurt.

I have a laugh at everyones reaction to and experiences of Fish Oil,

so me being me went and asked my doctor about it and whether or not I

should be on any specific diet.

I was told that although I have only 25%kidney Capacity and that my

creatine is high and does need to be lowered the only thing I should

cut out is Salt from my diet he basically said I should eat what I

want and even encouraged me to continue having the odd beers.

My main pre requisite now is basically not to dwell to much on the

fact that I have I.G.A and just try to be more mentally active and

get on with things.

I would like to say I had a few tears in my eyes on 's good news

not because I'm soft but I know that one day this is a bridge that I

will have to cross. I have many steps in front of me before these

bridges and I am going to make sure I enjoy every one of them.

When I.G.A happens or people get incapitated and lets face it I think

I prefer what I have to some problems facing other people, strength

of charachter comes into play. I can see that the members have that

strength in them, bucket loads and I admire and thankyou all for the

real tonic and medicine through this disease.

The power of human kindness and the strength and belonging from

bloody strangers that actually give a shit and care enough not about

there own problems but those around them.

Once I get up and running and I have the right balance on my

medication and I am going to do what you all do and be a better

person not for me but for those around me.

I live on the beautiful Central Coast of Australia, this place is

magnificent and now truely appreciate it's beauty because of IGA, if

there are any members from any where in the world that needs a

holiday I have been told that Australia's Kidney Foundation is second

to none and can cater for those that need special dialisis on trips.

My house is your house so if you want a holiday in Australia give me

a shout and say Gidday.

For fun any little ones that have I.G.A come and say hello to

my little boy on his web site he is three in June.

http://www.geocities.com/bluenose20002000/homepage.html?1049228788820

The kids can learn a bit about Aussie animals lol

Well I have talked for long enough.

Thank you just seemed too short

All the best

Arran Steele

P.S I have a bar in my house where I collect useless stuff. I was

wondering if each member would like to send me a post card from where

ever in the world you are from and I will collect them and I can send

something back to you.

My address is

Arran Steele

26 Elaine Avenue

Berkeley Vale

NSW 2261

Australia

The post cards will take pride of place!! >>

April 12, 2003

Arran,

Wow! What a great post! My son and I both have IgA. I am fairly

new to this support group, but like you, I think everyone here is

great.

I'll be sending a postcard to you from Salt Lake City, Utah in the

United States.

April 14, 2003

Hi ,

I have so many things to say to you in this post. If the other members

become bored, you know you can just " delete " me!

First of all, I visited your web-site and your son is adorable and you have

another child due in September? Enjoy every moment, (good and bad) with

your children, they will be gone before you know it. Trust me, I speak the

truth on this one!

Secondly, your post to the other members was so moving, it made me cry.

When I found this site I felt like I had found a long lost friend. Having

others out there (even though they were strangers) who were dealing with the

same issues gave me a place to come for support, education and HOPE. This

is like my daily tonic. I drink my coffee and laugh and cry while reading

the posts.

About your Neph telling you it would be a year for dialysis. I want to give

you some encouragement here. Keep in mind that Neph are working on

statistics and he was trying to prepare you for the worst possible scenario.

I have known that I have IgAN since my early 20's I'm now 48 years old. In

February 2000 my Neph did a biopsy and I was told in the hospital that it

was very bad news and that my IgAN was very aggressive and that the

prognosis was not good. My Doctor told me (later) that he was sure that I

would be on dialysis by the end of 2000. It is now 2003 and still I'm

hanging in there with no dialysis in site. Last week I had an appointment

and it was very positive. He doesn't want to see me for 6 months! 6 WHOLE

MONTHS!!! Seemed a little long between appointments to me, but hey, who am

I to argue with a man who is always right! (Sorry, you guys know I can't

help myself!) I know that it has been at least 5 years since I could go 6

months between appointments. (I also know that if I need to go back before

the 6 months, I'll do so on my own.) FYI, My protein improved to less than 1

Gram, my blood pressure was finally normal, and I had no change in s

creatinine 2.7, and my function remained stable around 24%. I've got a lot

of things to get done this summer, so I'm going to take this good news and

not look back. I'm going to run with it!

I guess to make a long story short, what I really mean to say is keep the

faith. It does in the beginning take some time to adjust to having a life

threatening disease. But Doctors don't always have all the answers or the

correct timetable. Live your life, love your family, enjoy your work and

you will find that you will be able to cope with having IgAN. Your life

will be rewarding and full even with this little bump in it. Your post to

the board was what we work very hard to achieve here. Members supporting

members who are in need. Maybe today you NEED the support, maybe tomorrow

you GIVE the support.

Lastly, do you realize that you just offered a holiday to over 700 members?

I've never been to the land down under...maybe now's the time. Now that we

have a place to go, I say that we have a IgAN convention and the location

can be beautiful Australia! (I'm teasing you) All kidding aside, I think

that your generous offer shows that you're a very kind and giving man.

Keep us posted and I'll send you a post card also, but I have to look for a

special one!

Connie,

Moderator, USA

Thank you for being here for me

Dear everyone,