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Medical Forum / Diseases and Disorders / Lupus / May 2004

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Wes - Alport's

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J - 28 Apr 2004 11:00 GMT
Law and Order had someone on who had Alport's and couldn't find a donor
match for a kidney.
She apparently was deaf and they said that comes with it?

Anyways, I was thinking of you and hope you're doing okay with the move.

And hopefully getting rest.
Hugs
J
Maggie - 28 Apr 2004 17:34 GMT
I didn't know Wes had this, nor did I know it even existed, but here's a
bit of what I found.  Very strange that it would affect the hearing.  

**Sending some energy to you, Wes.   Hoping all is going smoothly....**

http://www.healingwell.com/medcenter/alports_syndrome.asp Nephritis is a
general term for inflammation of the kidneys. There are several
hereditary forms of nephritis. Alport's syndrome (AS) is one of these
but is unique because of the additional symptom of hearing loss in the
presence of kidney failure. The disorder causes chronic
glomerulonephritis with destruction of the glomeruli. The eventual
result is end stage renal disease (ESRD) requiring dialysis (or
transplantation) develops between adolescence and age 40.
AS affects the basement membranes which are the supporting layers of
epithelial and endothelial tissues that make up much of the body's
surfaces. The cause is a mutation in a gene for collagen. The disorder
is uncommon, affecting about 2 out of 10,000 people
Wesley - 30 Apr 2004 20:16 GMT
Hi J,

Yep, it comes with it for many, but not me.  There are about six
subsets of Alport's, and four have deafness and/or something called
lenticonus (an eye affliction) connected to them.  Ours just has the
kidney disease.  Lots to say, but I don't even know if this one is
going to get through, so I will wait until I have the internet thing
straightened out.

> Law and Order had someone on who had Alport's and couldn't find a donor
> match for a kidney.
[quoted text clipped - 5 lines]
> Hugs
> J
BJ - 30 Apr 2004 22:20 GMT
Hi Wes,
I see your post, so fill us in on details. We have been waiting to hear all
about the move, and how you managed.
BJ-Sk. Canada
> Hi J,
>
[quoted text clipped - 14 lines]
> > Hugs
> > J
Wesley - 01 May 2004 05:40 GMT
Hi BJ,

We have finally moved.  All the painting is done, but we still have
other things to do.  The washer and dryer still aren't hooked up, so I
will be heading over to my Dad's tomorrow to do that job.  Kip is
still deciding on curtains for the living room window, and Gabi's
bedroom.  Even though it was a short move, it was hectic.  Everyone
was stressed out.  Liam had a good cry the other day.  I wasn't here,
but Kip said it was the most broken hearted little sobbing.  He had
never slept in his own room before, as Gabi and he had always shared a
room. He feels better now though.  He played in his own bedroom all
day yesterday, and he slept there by himself last night.  Gabi was the
one who had Mom sleep with her! :)

I have had all kinds of things going on these past few weeks.  I am
still having these strange attacks, but fortunately there has been no
lasting damage.  I saw a neurologist the other day, and he said that
it was one of three things: TIA's, focal seizures, or migraines.  He
has ordered an EEG and another MRI with a perfusion scan for mid May.
I had a cardiac stress test on Wednesday.  I lasted eight minutes,
which was longer than I thought I would.  They managed to get my heart
rate up to 137, which is good considering all the BP meds I take.
They also injected some type of contrast and took films before and
after the actual test.  I have not received any results yet.

I have not yet seen my nephrologist since he suggested that I was
having panic attacks.  The neurologist ruled that out right away.  No
more pentamidine treatments.  I am now taking dapsone three times a
week instead.

That's about it, except for the internet hassles.

> Hi Wes,
> I see your post, so fill us in on details. We have been waiting to hear all
[quoted text clipped - 20 lines]
> > > Hugs
> > > J
J - 01 May 2004 10:40 GMT
> That's about it, except for the internet hassles.

Thanks for the update Wes.  When you described Liam crying, I was thinking of an advert on
TV where a family moves and they took the door jam with them where they'd marked each
child's heigth. It mists my eyes up. If only moving was that simple. I've mentioned easy
to maintain curtains before . I think they're called balloon curtains (made of colorful
sheet materials..easy to wash and maybe (oh no ! ) window blinds. There's some nice
vertical cloth ones out there, but I expert Kip has ideas of her own.

I mainly popped in to ask what internet hassles you are having?
I was having all kinds of Google chaos on Thursday and Friday and perhaps it's been
affecting you, since you post through there. Hopefully it's over now, their stocks have
gone up. (some new announcement). I saw the 2 owners on TV last night.  Very young guys
and oh so rich and about to get richer. Advertising contracts or something which show up
on our Google searches. They're excited. I want some of their money <smile>

Let me know if I can be of assist with your "internet hassles".
Hugs
J
BJ - 01 May 2004 17:06 GMT
Hi Wes,
Moving is hard on everyone, even if it isn't far. I am glad Liam has settled
in. Poor little sweetie. I can just imagine how sad his crying must have
been. Kids do adjust quickly though, so I know both children will be fine. I
don't pretend to understand all of the tests you are having. Things have
been so complexe with you. Just know that I am thinking about, and praying
for you. Try not to overdo things. Rest as much as you can. It was so good
to hear from you.
BJ-Sk. Canada
> Hi BJ,
>
[quoted text clipped - 52 lines]
> > > > Hugs
> > > > J
Bruce On. - 01 May 2004 23:52 GMT
> Hi Wes,
> I see your post, so fill us in on details. We have been waiting to hear all
> about the move, and how you managed.
> BJ-Sk. Canada

I see You also Wes
Bruce On." thinking of you and Kip on the move "
J - 01 May 2004 01:40 GMT
You're oming through loud and clear, well clear, Wes.
Will watch for your updates
Hugs
J

> Hi J,
>
[quoted text clipped - 4 lines]
> going to get through, so I will wait until I have the internet thing
> straightened out.
Maggie - 01 May 2004 02:19 GMT
Hi Wes!

Great to see you post!  Will be waiting for more info & hoping all is
well.

Maggie
 
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