new to group

[Guest guest]

Jbauerson,

I think that I have had this disease since I was in my early 20’s. I am

now 55, so have had this for 35 years. As you can see, it has taken me

quite a few years to get to the point that I am now. Much more

important is to watch your blood pressure. This kidney disease will

increase your blood pressure. With you being in your mid 40’s you need

to pay great attention to your blood pressure. With the IGaN, your

kidneys are impaired somewhat which can cause blood pressure to

increase. Increased blood pressure can damage your kidneys. Yes it is

a vicious cycle. Many people have found out that they have this disease

because of the blood pressure problem which can be too late to do some

of the things that they could have done had they found out about this

disease earlier. Sooooo, count yourself lucky that you have found out

in time to avoid that problem.

new to group

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> actually i have never been in on any chats or groups ever... but

here

> i am with igan. seems all unreal to me because i don't feel as if

> there is anything wrong with me. i've never been more sick than a

> cold, i have no pain, i am not chronically fatigued, no swelling

and

> really no telling how far along i am other than the nephrologist

> putting me on a six month calender to slow down the progression.

(so

> i guess quite a ways she says i'm at about 60%) first third and

fifth

> month of steroid infusions with a pill every other day and

ofcourse

> fish oil. (costco has them for $9.99 for 150) i started this

regimen

> about three weeks ago and since i have never been a long sleeper,

> insomnia does not seem to be that big of a problem, but i am

> wondering when all of these other side effects start to happen. i

> think what scares me the most is what will happen after the six

> months are up? fear of the unknown is a great motivator. sorry for

> the long post.....jorn

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[Guest guest]

Hey

I won't have the specific numbers for a few days yet but when I

origionally did the basic test my creatinine clearance was 4.2(i

think) I am wondering about those numbers myself and have an appt

within days to evaluate the results. I'll clue you in if interested.

I live in Sonoma County California How about you?

> > actually i have never been in on any chats or groups ever... but

here

> > i am with igan. seems all unreal to me because i don't feel as

if

> > there is anything wrong with me. i've never been more sick than

a

> > cold, i have no pain, i am not chronically fatigued, no swelling

and

> > really no telling how far along i am other than the nephrologist

> > putting me on a six month calender to slow down the progression.

(so

> > i guess quite a ways she says i'm at about 60%) first third and

fifth

> > month of steroid infusions with a pill every other day and

ofcourse

> > fish oil. (costco has them for $9.99 for 150) i started this

regimen

> > about three weeks ago and since i have never been a long

sleeper,

> > insomnia does not seem to be that big of a problem, but i am

> > wondering when all of these other side effects start to happen.

i

> > think what scares me the most is what will happen after the six

> > months are up? fear of the unknown is a great motivator. sorry

for

> > the long post.....jorn

[Guest guest]

Just wanted to introduce myself since I am new to group. I was

diagnosed w/DH about 10 mos ago. I'm doing pretty well on GF diet,

still learning about what's OK and what's not. It's a struggle at

times, isn't it? If anyone had told me (prediagnosis) that I would

not eat a " Big Mac " for 10 months I would have laughed so hard I

would probably have passed out. Now it's amazing what you'll do

without to avoid breaking out, or for those w/CD, having (as we call

it at home) the 'terrible tummies', which I get occasionally.

As an adopted child, I have no idea where this came from, and no one

in my family to commiserate with. I do have 2 sons (21 and 15) who

appear to be fine, although since I was diagnosed at age 49, I know

they aren't 'out of the woods'.

For those of you who have looked into this issue, here's my

question: I understand that this is genetic, but how is it passed

on? If my sons do not develop CD/DH, are their descendants 'free'

from getting it? Is is something that jumps around from generation

to generation? Is is a 2-parent genetic thing (both parents must

carry the gene)? Can one carry the gene w/out developing CD/DH?

Most of the info I've read on this is so techinical that I really

can't fully grasp it. Please use 'plain english' in replies because

my high-school genetics was 30 years ago and I don't remember much!

Hoping you all have joyful holidays.

Stormy