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Re: life, the universe, labs...

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Cy,

Wow, yes I can see why you would have your hands full-and I'm sorry

about your Dad. I unfortunately don't have any advice on long

distance care, but just wanted to say that you are all in my

thoughts and prayers--and happy new year to you too!

> Hi guys,

>

> Just checking in... Best wishes to everyone for a happy and

healthy new

> year. We've got a few bits of news worth passing on.

>

> First, bit of news (naturally!) is labs. Unfortunately, 's

C3

> continued taking a bit of a dive (down to 79). C3 isn't a value

that is

> important to IgAN folks, but our neph takes the position that is

is very

> important to MPGN folks. If his C3 continues to be in the toilet

next

> month, it's back for more 1000 mg IV pred runs. I'm still trying

to sort

> things out, but my hunch is that this is happening because we

tried to get

> him off the pred too fast (he was down to 30 mg at the time of the

blood

> draw). Many MPGN patients stay on pred for years and years.

We'll see

> where this goes. The good part of the labs is that everything

else looked

> great: Protein creatinine ratio was 0.17!! Microalbumin was

down, CBC

> looked good. I wish I knew whether his podocytes were up.... but

> unfortunately, given the holidays, the labs that does the podocyte

count was

> not open to deliver samples to.

>

> Second, I won't be responding to posts as reliably as I have in

the past

> because my hands are full here. I mentioned this to most of the

other

> moderators, but was remiss about mentioned to the list at large.

A bit

> before Christmas, my dad was diagnosed with colon cancer. Given

my dad's

> age, this fits into the category of " everybody has to die of

something " -

> however, it's getting a little time consuming. I'm still here and

still

> posting, just not as reliably. If anybody has any advice on long-

distance

> care giving (unfortunately, and I are my dad's only

relatives - and

> he's 3000 miles away), email me privately! Right now, I'm just

> concentrating on investigating hospice benefits under Medicare.

>

> I am very impressed with the people who were posting up until the

magical

> hour last night! For us, middle age took it's toll and I was

curled up in

> bed at 9:00. Last year, and I were checking IGAN email

almost every

> hour - and watching New Year's come in round the world.

>

> Happy new year to all!

>

> Cy

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Cy I hope that 's C3 looks better next month. I know how nasty those

1000 mg doses can be, let's hope he doesn't have to go thru those again. At

least the other values are staying stable!

I'm so sorry to hear about your dad. I lost mine to lung cancer 12+ years

ago, it's never easy. Take the time you need to take care of your family.

I wish I had some advice on long distance care options I wish you the best

of luck in finding things that will work for you both.

Amy

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Hi Cy,

You certainly have had some trials over these holidays. I hope

is better; don't know about going off pred too quickly; for

myself, have a long time to wait. About your father, colon cancer

can be very treatable for men in different age groups. My father had

it, and that was treatable. I hope your father can receive some

excellent medical help. Yes, you do have your hands full. Take care,

Phyllis

- In iga-nephropathy , " Cy Webb "

<cyashleywebb@s...> wrote:

> Hi guys,

>

> Just checking in... Best wishes to everyone for a happy and

healthy new

> year. We've got a few bits of news worth passing on.

>

> First, bit of news (naturally!) is labs. Unfortunately, 's

C3

> continued taking a bit of a dive (down to 79). C3 isn't a value

that is

> important to IgAN folks, but our neph takes the position that is

is very

> important to MPGN folks. If his C3 continues to be in the toilet

next

> month, it's back for more 1000 mg IV pred runs. I'm still trying

to sort

> things out, but my hunch is that this is happening because we

tried to get

> him off the pred too fast (he was down to 30 mg at the time of the

blood

> draw). Many MPGN patients stay on pred for years and years.

We'll see

> where this goes. The good part of the labs is that everything

else looked

> great: Protein creatinine ratio was 0.17!! Microalbumin was

down, CBC

> looked good. I wish I knew whether his podocytes were up.... but

> unfortunately, given the holidays, the labs that does the podocyte

count was

> not open to deliver samples to.

>

> Second, I won't be responding to posts as reliably as I have in

the past

> because my hands are full here. I mentioned this to most of the

other

> moderators, but was remiss about mentioned to the list at large.

A bit

> before Christmas, my dad was diagnosed with colon cancer. Given

my dad's

> age, this fits into the category of " everybody has to die of

something " -

> however, it's getting a little time consuming. I'm still here and

still

> posting, just not as reliably. If anybody has any advice on long-

distance

> care giving (unfortunately, and I are my dad's only

relatives - and

> he's 3000 miles away), email me privately! Right now, I'm just

> concentrating on investigating hospice benefits under Medicare.

>

> I am very impressed with the people who were posting up until the

magical

> hour last night! For us, middle age took it's toll and I was

curled up in

> bed at 9:00. Last year, and I were checking IGAN email

almost every

> hour - and watching New Year's come in round the world.

>

> Happy new year to all!

>

> Cy

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