Re: Kidney disease young, vs. later in life

December 20, 2004

, since I have no © on it, go right ahead. I think that anything that a

" normal " person can understand works. I also made up an " average " workday with

points (like the spoon story) that I have adults take. After they give me their

score, I say " OK, now take away half your points and let's see what you're

willing to give up. " I tell them that is a decision " we " need to make everyday -

what we can and cannot do just because we don't have all that energy.

W4JC@... wrote:

Hi ,

Thank you so much for all you are doing to raise awareness. I really like the

analogy of standing in line to watch a movie! That is something everyone can

understand. I think I will borrow that analogy for people I talk to if you

don't mind, but I will give you credit for coming up with the idea :-)

In a message dated 12/20/2004 9:25:26 AM Eastern Standard Time, Cohen

writes:

>

>Amy:

>

>That's great that you are working to raise awareness. I've done a couple of

presentations to groups, and one to Bar/Bat Mitzvah candidates who have to do a

Mitzvah (good deed) project, hoping that one would choose organ donation

awareness as their project.

>

>Talking to people, I ask them who likes to wait on line, like at the movies. No

one volunteers. So then I say what if you didn't see the movie, you could die,

who would wait on line. Most, if not all, raise their hands. Then I ask them how

they would feel if the line for movie was 5 years long, and everyday they

waited, they might not make it, or they'd have to spend time hooked to a

machine. I tell that that is what it is like everyday for someone waiting on the

organ list. I got a lot of comments from parents in the room asking how to

become a donor.

>

>Amy Griswold wrote:

>Kathleen,

> I think you are on to something here. I also think that those of us in our

late 20's to early 40's tend to have young kids or aspirations of having

children. When we get hit with our diagnosis and the sometimes daily side

effects of medications or the disease it's rough. We are set in our life

pattern of working, taking care of children and house, and paying off the debt

we incurred in our early 20's. A major life change hits us older people hard

due to the responsibilities we already carry and the worry that we won't be able

to continue with them. I know my initial reaction is " How is this going to

affect my kids? " " What will happen to them if something happens to me? " As a

teen diagnosed there are problems to deal with but once you settle into the

routine it becomes part of your life and you build the responsibilities in your

life already adjusted to the fact that you have this disease.

> I also talk about my disease to anyone who wants to know about it.

Partially to raise the awareness of live donor transplants since whenever you

say " I'm a kidney patient " the first question you get is " Are you on dialysis? "

and " What will happen when your kidneys fail? " I find this is a great

opportunity to educate people on live donor transplants....I know quite a few

people I've spoken with didn't even realize they did live donor kidney

transplants. I was being measured by the woman at Curves the other day and she

asked the " What will happen if your kidneys fail? " question. I answered, in a

very relaxed tone, " I'll either have a transplant from a live donor or cadaver

or go on dialysis. " She just looked at me and was in amazement...she said " Just

like that, you sound like it's second hand. " I think just letting people know

it's just part of our life now, yes a major disease but just part of our life

none the less, is helpful in combating the " pity " factor. Perhaps it's

> just the teacher in me but I think it's good to educate people about diseases

they have no idea exist. Think about it, if the 100,000 or so people diagnosed

each year with IgAN told just 5 people each about this disease, that adds up to

500,000 people knowing about it's existence and about live donor transplant

opportunities. My hope is that it helps someone else down the road.

>

>Amy G.

> Kidney disease young, vs. later in life

>

> Ruminating about Pierre's latest posting...

>

> I find those of us who develop kidney disease at a younger age are

> much more " well adjusted " to it than someone who is faced with it at a

> much later stage in life - more accepting, maybe? Generally by the

> time we know what's going on and what it means for the rest of our

> life, we've gotten used to the protocol, doctor visits, meds, and

> dietary restrictions, etc., etc. So it doesn't seem so earth shaking

> when we're going through the first stages of the disease and it's

> diagnosis.

>

> The one thing that does bother me, however, is (what I call) the

> " pitying attitude " of others. And having CKD for so long, and looking

> about 10 years younger than I really am, I see it a lot. It's gotten

> to the point where I don't strike up conversations in the patient

> waiting room at the nephrologists anymore and don't mention it to

> co-workers and friends unless it's absolutely necessary or I know them

> really, really well. Most seem to feel that it's a death sentance,

> because they don't know much about kidney disease, or they only see

> very sick and worn out people on dialysis. Rather than being a death

> sentance for me, it's helped me to appreciate life more than the

> average person does. Plus, I was taught at a very young age that I

> needed to be able to manage my health care.

>

> Kathleen

>

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December 20, 2004