PINTEREST

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WHERE WE'RE AT NOW:

As many of you have been keeping up to date with the transplant
situation via my blog, I wanted to let you know where we are at
now. Dr. B at UM, told us the best option would be to get "Ser"
on a waiting list, which can take up to 5 years plus for anything
to ever come up, but well, it has to be done because we have to
start accumulating time.

His sister is going to be further tested eventually to see if she
can be a potential donor.

We all hope this will be the solution!

MY ONLINE STOREFRONT

http://www.cafepress.com/miamoondesigns

THANK YOU

Kudos to the "Vivster" for stepping up to the
plate and offering to be a potential donor.
It is way beyond the call of duty but it is
greatly appreciated!

Also to MM and to an "old red head friend"
of my husband's. Thank you so much for even
offering!!!

WHAT HAPPENED - WHAT IS IGA?

Well, as some of you may know, my husband's potential donor was ruled out as a donor for his kidney transplant because of a problem that was discovered through a biopsy. It's called IgA and thankfully, it was discovered now before the transplant surgery.

What is it? IgA nephropathy is a form of glomerulonephritis. Damage is caused in the kidney by the abnormal buildup of a protein (IgA). Research suggests that this is due to an autoimmune disorder (involving the body's immune system.) What starts the disease in motion is not yet known. 

Who gets it? In the United States, Canada, and the United Kingdom, IgA nephropathy accounts for 2-10% of glomerular kidney diseases, but in Japan, it accounts for 18-40%. It often begins in older children or young adults in their 20s and 30s. The disease occurs more often in males and is rare in blacks. It seems to run in families, which suggests that genetics play a part in who develops it. 

How is it diagnosed? The most common symptom of IgA nephropathy is blood in the urine, which causes the urine to look tea colored. To confirm the diagnosis, a small piece of kidney tissue must be removed (biopsy) and examined. There is some concern that IgA nephropathy may actually be less rare than thought, since some people may have it but without the biopsy the disease wouldn't be detected. 

How is it treated? One of the most serious consequences of IgA nephropathy is that the kidney becomes so damaged that it stops working, called end-stage kidney failure or end-stage renal disease (ESRD). This will happen in about 30-40% of people with the disease. There is a lack of agreement among researchers about how to best prevent ESRD from happening in IgA nephropathy. Some of the current treatments are: • Control of high blood pressure with diet and medication • Steroids such as prednisone • Drugs to suppress the immune system, such as Imuran, Cytoxan, or CellCept • Fish oil dietary supplements If one or both kidneys fail, their function has to be replaced either by dialysis or kidney transplant. 

What is the outlook? As many as 50% of people with IgA nephropathy don't develop serious disease. Studies are trying to discover how to best prevent the disease from becoming kidney failure, or even how to reverse the disease's effects. Future research could look for how the disease occurs, and how to easily test for its presence so that early treatment could be started."

TUESDAY: NEW BEGINNING

After waking up with that empty feeling in the pit
of our stomachs this morning, we are psyching ourselves
up for a new beginning! Today at noon we are going
back to the hospital to meet with the surgeon and
coordinator to see what "Ser's" next step will be.
"Jude" finally understands that this process was a
journey that helped discover her disease, which
ironically may be what "Ser" has (only 20 years earlier.)
She has the potential of having her kidneys also
deteriorate to zero function 20 years from now but
luckily all these tests discovered the problem.

Now we have to focus on finding another donor
and getting "Ser" all better so we can continue
with our lives.

I will keep you posted on how it goes today.

SILVER LINING AT THE END OF THE RAINBOW


Have you ever seen a full rainbow? You know like
the kind you see in pictures and books? I had
never seen a COMPLETE rainbow ever, at least not
until today at about 7:30p.m. Right after "Jude"
and "Ser" came home after getting the very
disapppointing phone call. They had gone to pick
up something for dinner and as they were driving,
that's when "Jude" rcv'd the call that she could
not be a donor.

I'm a freak when it comes to signs(and a lot of other
things too - lol) but really I'm always looking for
a meaning or reason and to have a full colorful
rainbow right outside our front door after such a
miserable emotional roller coaster is like a sign!

"Ser" came home and scooped Chi Chi outside to
show her what an amazing sight it was. Of course,
I had to follow along with my camera b/c I'm freaky
like that - gotta take pictures all the time, hence
the "Mammarazzi!"

I truly believe that everything happens for a reason
and that it was "Ser" that was suppose to help
"Jude" this time around, not the other way around.
IF she hadn't been tested for his sake, her health
problem would not have been discovered anytime soon.
The positive thing here is that he is fortunate enough
to have another potential donor, his sister.

I may be wrong about the rainbow and the signs and the
meanings but it helps me accepts things better.

Either way, it was an amazing sight, really nice moment
outside with the kids and a BEAUTIFUL RAINBOW that I hope
means has a silver lining at the end...

DISAPPOINTING NEWS

As of 7p.m. today we rcv'd the call that unfortunately,
Judith cannot be a donor.
Her biopsy results came in and she has the beginning of
an immunological disease that must be addressed.

Sergio's operation is OFF. Disappointment is an
understatement.

We need to know where to go from here so when we know
we'll let you know.

Thank you for all your support, prayers etc...

TRANSPLANT: THE WAITING GAME

As of 4p.m. no news on pathology (biopsy results) yet - can u
imagine "Jude's stress!? They (hospital) told her they would
give her the results by 2:30 p.m. and nothing - no phone call
nothing. How cruel is that to keep a person waiting with such
information? However, at 3:30p.m. the doctor did call her and
promised that the pathology report would be signed by 5-5:30p.m.
What torture! In the meantime, they are scheduled for surgery
this Wednesday and admission
into the hospital tomorrow!!!

So we continue with the waiting game.

TOO OLD?

Okay, so at what point in life do you wake up one day and realize
you can no longer call your better half "babe?" That it becomes
extremely tacky. When is it uncool to be on MySpace and think
"Entourage" is the coolest show ever. When are you too old for
these things. What is that age marker when you become, "Hey
Maam" instead of "Hey Miss." Is it motherhood, ya think? Is it
30? Is it 40? I know I'm there but I can't help it. I'm stuck
in in time warp and NEVER WANNA GROW UP! So even though our
teenage kids think it's way too tacky, I'm still gonna keep being
a kid at heart. I'm going to call my husband "babe" or honey
(depends on the mood) - at least it shows I still love him -I'm
going to stay tuned on Sunday nights to see what the hell "Ari"
is up to and I'm going to keep playing on MySpace as long as I
can. Hey, at least I can still talk about my partying days and
"Jack Daniel" shots and the good ol'days like it was yesterday -
cause it was - just kidding! Personally, I think YOU ARE NEVER
TOO OLD FOR ANYTHING! and to those who think it's tacky - too bad!

STRESS

So there's this huge possibility that the transplant can be
THIS Wednesday!!! We got an "unofficial comment" from a staff
member. Can you imagine? All the planning I did before, what
to do with the kids, where to stay, camp, babysitter, the traveling
back & forth.

Now, there is NO plan in place!!! The meeting is Monday morning at
10a.m. so by noon we should know if the transplant is on and if it
is indeed this week - yikes!!

Keep ya posted....literally.

NOT MUCH

Not much to say...just wanted to write
but nothing's flowing! So until next time...

UPDATE: JULY 20TH

Things are starting to move again. We got a call today
to meet with the transplant coordinator THIS Monday.
Let you know how it goes.

MINI-ME

I know I have a "mini-me" on my hands when Chi Chi
walks into the JCC singing "Slim Shady" (Smack that...)!
LMAO! Oh, and request to hear song #2 on the now
infamous 2-17-07 CD (Baryy White!)

SYNOPSIS


Just a little summary to those of you
just joining in on reading this blog.
The transplant update I refer to is my hubby's
kidney transplant, which was originally scheduled
for this past July 4th week. Due to a problem
with the donor's situation ("Jude") it had to be
postponed. It's been very stressful to say the
least. Figuring out what the heck we are going
to do but we must wait and wait and be at the
mercy of the bureaucratic health care world.
Which reminds me I really want to see"Sicko."
Has anyone seen that yet? Comments?)

So anyway, as I mentioned on a previous post,
we have to wait to see what the biopsy reveals.
Hopefully, for everyone involved and ESPECIALLY
for "Jude's" sake, it is something insignificant
and we can move on.

Let's hope & pray for a positive outcome!!!

THE BROKEN KNIFE


Does anyone know what a centipede symbolizes?
Jude found one in her bed!! Imagine getting
ready to go to sleep and there a creepy crawyly
reddish centipede with all it's creepy little legs.
I really had no answer for her on the symbolism.
I'm looking for my OWN smybolism b/c

I was cutting a watermelon with a steak knife
(go figure)and I cracked the knife (which is
otherwise sturdy) in half!!!

Too strong for my own good?
Wimpy knife? No! Symbolic,,,hmmm,

I wonder? I'm real into signs so if you
have any suggestions (nothing horribly negative
please) give me a shout out.

TRANSPLANT UPDATE

Okay, so FINALLY "Jude" has been given a date for the 2nd biopsy.

After much bureaucracy and shuffling of paperwork, somebody finally
"peered" in and helped get us a date. Wednesday,the 18th, she'll
go in AGAIN for another round of medical mayhem. Let's wish her luck!

CONVERSATIONS WITH MY 4-YEAR OLD


"Mommy can we get dressed again and leave right away?"
{to go play} "No, baby, I have stuff to do and the world
does not revolve around you," I say. Yes, it does!"
she exclaims. "No it doesn't!" I shout back.
She says, "YES it does, G-d gave me a gift"
"Who taught you that? I ask

No answer.

- END OF CONVERSATION -

Where does she come up with this stuff?