Update

[Guest guest]

Mitch,

I can relate to the " nothing to do " . Thank God for movie theaters. It was

packed and we had to sit in the front ( everyone there looked Jewish) but it was

a great movie and a nice way to pass the day.

I found a Russian store open and bought a bunch of vegetables. We had weight

watchers soup and a big salad and lasagna. My daughter started weight watchers

too. She is built and beautiful, but she feels her eating is out of control

and she decided to rein it in in this way. I'm proud of her. The day before she

started, she had 6 helpings of ice cream, was eating ccookies and junk all

day and was bummed out at night cause she ate too much. This has given her focus

and will help her stay this way, or even lose a few. She is 19.

Yesterday was pretty good for me. I did have an extra bowl of cereal last

night around 8pm, cause I was hungry and everyone was baking. I did measure it

though, but didn't subtract it.

I am trying hard not to eat more than my points, but sometimes I just screw

up- like Wednesday night when I ate four cookies and some other things the day

before that I can't remember.Yesterday I remembered I have flex points ( that

I never use) and so I counted it as flex points and now I don't feel like a

screw up.

Thanks all for being here for me.

Deb

[Guest guest]

LOL. Your lucky Mitch, around here most of the Chinese and Korean restaurant

owners are Christians so they are closed too!

Kris

_____

From: Mitch Javeline

Had Chinese food

take-out for dinner (isn't this why chinese restaurants were invented -

to give Jews someplace to eat out on Christmas day!!!!). I doled

out my alloted portion of Won-Ton Soup and Chicken & Broccoli

with Rice (I had saved points for this) and put the other portion away

for the weekend).

[Guest guest]

Mitch, I always look forward to reading your posts. Great update. Glad

you're doing so well. I need to get my rings resized too, but since I still

have so much more to lose I kind of want to wait so I don't have to do it

twice. But I guess it would be better to do it now than to lose them.

Laurie

243.6/193.4/160

>

>Reply-To: Serious-Weight-Watchers

>To: Serious-Weight-Watchers

>Subject: Update

>Date: Fri, 26 Dec 2003 07:50:09 -0500

>

>I've been away from the list for about a week until this AM (as

>

>you've no doubt noticed from my flurry of replies), so just thought

>I'd throw in a series of updates/random comments....

>

>- Since my big loss Saturday morning, I've had a really good WW

>week. Don't know if it will result in a loss tomorrow, but I feel real

>good about my food plan, exercise, etc. this week.

>

>- Chistmas day is not a big deal for us. With nothing open, we're

>pretty much locked in. But it was a nice day yesterday, so we took

>a family walk. Only so far and so fast could we go with our 4

>year old, but it was fun and it was fresh air. Had Chinese food

>take-out for dinner (isn't this why chinese restaurants were invented -

>to give Jews someplace to eat out on Christmas day!!!!). I doled

>out my alloted portion of Won-Ton Soup and Chicken & Broccoli

>with Rice (I had saved points for this) and put the other portion away

>for the weekend).

>

>- Finally took my wedding ring in to be re-sized. It's been slipping

>off my finger. Its' a " roll-over " ring - three seperate rings soldered

>together. The jeweler explained that its' like re-sizing three seperate

>rings and it would be $75.00. I said that " well, it has to be done " . He

>said, " I guess you've grown " . I said, " No, I've shrunk. It's better

>then losing the ring " . LOL!!!

>

>- Got a nice $75.00 gift certificate (hey! I could pay for the ring

>resizing!!!!) from the sales reps I support at work. Quite a surprise!!!!

>This came from a group of 6 sales reps, but the two reps who actually

>handed it to me gave me big hugs and compliments on how great

>I look - it made me feel really great!!!!

>

>- Just heard this morning about Atkins wraps being offered at

>Subway starting Monday. Looks like everyone is selling out

>to this Atkins plan.

>

>- We're going out with another couple to a restaurant dinner/dance

>for New Year's Eve. That's my next big challenge. My big issue

>is dinner won't be until 9:30/10:00 at night. I need to figure out

>how to wait that long. Right now, my plan is to save flex points

>early in the week ... and work on 5 or 6 mini meals during the

>day on Wednesday to get myself to dinner.

>

>- Going to head off to the store sometime before new years

>- need some new jeans (the women who cuts my hair, said,

> " Mitch, if you're going to lose the weigh, you need to buy

>new jeans that don't sag " (LOL!!!) and some new gym

>shorts, PJs (you know, I always used to sleep in my

>underwear, put now I'm just so cold without PJs), and

>other stuff - still don't want to overspend. I think I can

>fit into a size 36 jean now (down from 50 originally). I

>have 17 pounds to go - so I don't know if I'll wind

>up in a 36 or a 34 --- but, I still need some things to

>tide me over.

>

>- Had my doctors' visit on Tuesday. Routine physical.

>Doctor said, " you're donw almost 100 pounds. You're

>one of the few people who got a grip on the situation. Most

>people can't do it and they wind up on medication. I can

>get their #'s down with meds, but I can't make them feel

>better or feel better about themselves " . Blood test results

>will be back shortly.

>

>Well, thats' it for now.

>

>Best,

>Mitch

>

>--

>

>--------------------------------

>All-Time High - 300

>--------------------------------

>Starting Weight - 281

>Lost before Re-Joining WW - 25.2

>Lost since Re-Joining WW - 71.0

>Total Loss - 96.2

>Current Weight - 184.8

>WW Goal - 168

>Pounds to Go to WW Goal - 16.8

>Personal Goal - 165

>Pounds to Got to Personal Goal - 19.8

>

>

>

>

_________________________________________________________________

Make your home warm and cozy this winter with tips from MSN House & Home.

http://special.msn.com/home/warmhome.armx

[Guest guest]

Thanks ! I am sure my transplant will come at exactly the right time,

but that would not be before Pierre's! He is next up!

In a message dated 10/18/2004 7:12:29 PM Pacific Daylight Time,

snooksmama@... writes:

> :

> You are truly an inspiration to us all. Your can-do positive attitude and

> your faith have helped me so much. Bless you, and may your tx come very

> soon..

> , mom to Rob

[Guest guest]

Rita,

Your email put a lump in MY throat! Thank you so much. I feel overwhelmed by

the outpouring of support on this group. You guys are the best and I love

you too!!

In a message dated 10/18/2004 6:32:02 PM Pacific Daylight Time,

jrzyrita@... writes:

>

> - Again I find myself with a lump in my throat... I can hardly believe

> that the issue of dialysis and/or transplant is just around the corner for

> you. I admire your attitude and your will to persevere - you give us all hope

> by your compassion and courage in the face of adversity. I love you -

> I really love you and I pray that God continues to bless you each and

> everyday. He has certainly blessed us with your presence! Rita

[Guest guest]

Well, you are very deserving too with all your support and kind words.

Gloria

>

>

> Thanks ! I am sure my transplant will come at exactly the

right time,

> but that would not be before Pierre's! He is next up!

>

>

>

> In a message dated 10/18/2004 7:12:29 PM Pacific Daylight Time,

> snooksmama@j... writes:

>

> > :

> > You are truly an inspiration to us all. Your can-do positive

attitude and

> > your faith have helped me so much. Bless you, and may your tx

come very

> > soon..

> > , mom to Rob

>

>

>

>

[Guest guest]

,

Thanks for the update. I was very curious.

I hope you can bypass dialysis altogether!

I'll be praying for you.

~Dana

update

I saw my neph today, and had my second visit to the Renal Care clinic. I

told them both that I had decided on Hemo, but both have asked me to visit a

CAPD

session before getting my fistula surgery. Both are urging me to consider PD

over Hemo. My mind was already made up, but they feel with my work schedule

which causes me to travel very frequently, that PD would be better for me.

SO, back to the drawing board on that decision.

My GFR declined but only slightly to 18 from 19, so essentially steady, but

because I continue to lose weight, the plan is to activate me on the list

while

proceeding with live donor testing. I seem to be having more trouble with

edema now and if my memory serves me correctly, Pierre, I think you had more

trouble with edema towards the end too.

I am not going to be scheduled for fistula surgery until after I visit a CAPD

session, and even then if it looks like I will be able to get a transplant

quickly, they would prefer to just use a temporary catheter until I can get

transplanted. The hope is that I can move to transplant and bypass dialysis

all

together, but we will have to wait and see what the timing looks like. At

this

stage, I guess things can change quickly or so I am told.

, I did ask about a flu shot, and they did want me to have one because

they feel it is likely that it will be several months before all the testing

is

complete and a transplant could be scheduled, so they gave me one today at the

clinic. I am certainly counting my blessings that I did not have to wait in

line for 4 + hours like many people are having to.

SO, that is the scoop with me. I think the main thing they are concerned

about is my weight dropping too low, and the fact that I am symptomatic this

early in the game.

Phyllis, to answer your question, yes, I do have HSP along with IgAN. I have

tried Prednisone and Cellcept both in the past (Cellcept just earlier this

year) but neither worked for me. I do not have the red spots or rash that

often

accompanies HSP. I never have had that particular symptom of HSP for some

reason.

That is current status, and now I have to go monthly to both my Neph and the

Renal Care clinic so I guess I will have monthly updates from here on out.

Thank you all for your concern and caring for me! What a blessing to be

associated with such a great group!

In a message dated 10/18/2004 2:19:32 PM Pacific Daylight Time,

pjbpiano@... writes:

> Do you have HSP? I hope that you don't see those red spots very long. Are

> you on Pred. I'm weaning off pred and hope my HSP/IgA N doesn't return.

Let's

> know about your updates. Phyllis

>

[Guest guest]

Thanks Dana! I hope so too, but will prepare for both scenarios to be safe.

Thanks especially for your prayers.

In a message dated 10/19/2004 1:49:09 PM Pacific Daylight Time,

danajoy@... writes:

> aura,

> Thanks for the update. I was very curious.

> I hope you can bypass dialysis altogether!

> I'll be praying for you.

> ~Dana

[Guest guest]

OH ,

Since you seem to be slowly discarding those rose colored glasses, I'll have

to put them on for you. When are you going to do the CAPD session visit?

That seems to be the gating event for getting the fistula. I'm sure once

your mind is made up, that great stubborness will get you through any

attempts to persuade you with stuff you don't want. Here's hoping from the

bottom of my heart, that you manage to bypass this altogether.

Had a wonderful dinner guest the other night - one of the teachers in

's old day care several years ago and her husband. The woman has had

two kidneys transplanted and lost, presently has been on PD for four years,

awaiting kidney #3. She was wearing a skin tight dress, no sign of

catheter. It's great having her back in our lives. She travels a lot for

family stuff so PD seems to work for her.

Congrats on getting that flu shot!

Love,

Cy

> >

> > I saw my neph today, and had my second visit to the Renal Care clinic.

I

> > told them both that I had decided on Hemo, but both have asked me to

visit

> a CAPD

> > session before getting my fistula surgery. Both are urging me to

consider

> PD

> > over Hemo. My mind was already made up, but they feel with my work

> schedule

> > which causes me to travel very frequently, that PD would be better for

me.

> > SO, back to the drawing board on that decision.

> >

> > My GFR declined but only slightly to 18 from 19, so essentially steady,

> but

> > because I continue to lose weight, the plan is to activate me on the

list

> while

> > proceeding with live donor testing. I seem to be having more trouble

with

> > edema now and if my memory serves me correctly, Pierre, I think you had

> more

> > trouble with edema towards the end too.

> >

> > I am not going to be scheduled for fistula surgery until after I visit a

> CAPD

> > session, and even then if it looks like I will be able to get a

transplant

> > quickly, they would prefer to just use a temporary catheter until I can

> get

> > transplanted. The hope is that I can move to transplant and bypass

> dialysis all

> > together, but we will have to wait and see what the timing looks like.

At

> this

> > stage, I guess things can change quickly or so I am told.

> >

> > , I did ask about a flu shot, and they did want me to have one

because

> > they feel it is likely that it will be several months before all the

> testing is

> > complete and a transplant could be scheduled, so they gave me one today

at

> the

> > clinic. I am certainly counting my blessings that I did not have to

wait

> in

> > line for 4 + hours like many people are having to.

> >

> > SO, that is the scoop with me. I think the main thing they are

concerned

> > about is my weight dropping too low, and the fact that I am symptomatic

> this

> > early in the game.

> >

> > Phyllis, to answer your question, yes, I do have HSP along with IgAN. I

> have

> > tried Prednisone and Cellcept both in the past (Cellcept just earlier

this

> > year) but neither worked for me. I do not have the red spots or rash

that

> often

> > accompanies HSP. I never have had that particular symptom of HSP for

some

> > reason.

> >

> > That is current status, and now I have to go monthly to both my Neph and

> the

> > Renal Care clinic so I guess I will have monthly updates from here on

out.

> >

> > Thank you all for your concern and caring for me! What a blessing to be

> > associated with such a great group!

> >

> >

> >

> > In a message dated 10/18/2004 2:19:32 PM Pacific Daylight Time,

> > pjbpiano@... writes:

> >

> > > Do you have HSP? I hope that you don't see those red spots very long.

> Are

> > > you on Pred. I'm weaning off pred and hope my HSP/IgA N doesn't

return.

> Let's

> > > know about your updates. Phyllis

> > >

> >

> >

> >

> >

[Guest guest]

The PD catheter is not as big a deal as we might assume. It's actually

totally unobstrusive unless you're naked. It's very easily hidden in

clothes, and, many people use a special fabric belt that holds it in against

the skin at the waistline. I'm sure that it could easily be hidden out of

mind under the right lingerie :-)

What can be more visible than the catheter itself in normal street clothes

is the tummy which is always filled with the dialysis fluid. It's more

obvious on some than others, but I really never noticed anything

particularly obvious on the women I've seen who are on PD (they were fully

clothes and in public - I just thought I had better mention that).

Pierre

Re: update

>

> OH ,

>

> Since you seem to be slowly discarding those rose colored glasses, I'll

have

> to put them on for you. When are you going to do the CAPD session visit?

> That seems to be the gating event for getting the fistula. I'm sure once

> your mind is made up, that great stubborness will get you through any

> attempts to persuade you with stuff you don't want. Here's hoping from

the

> bottom of my heart, that you manage to bypass this altogether.

>

> Had a wonderful dinner guest the other night - one of the teachers in

> 's old day care several years ago and her husband. The woman has

had

> two kidneys transplanted and lost, presently has been on PD for four

years,

> awaiting kidney #3. She was wearing a skin tight dress, no sign of

> catheter. It's great having her back in our lives. She travels a lot

for

> family stuff so PD seems to work for her.

>

> Congrats on getting that flu shot!

>

> Love,

>

> Cy

> > >

> > > I saw my neph today, and had my second visit to the Renal Care clinic.

> I

> > > told them both that I had decided on Hemo, but both have asked me to

> visit

> > a CAPD

> > > session before getting my fistula surgery. Both are urging me to

> consider

> > PD

> > > over Hemo. My mind was already made up, but they feel with my work

> > schedule

> > > which causes me to travel very frequently, that PD would be better for

> me.

> > > SO, back to the drawing board on that decision.

> > >

> > > My GFR declined but only slightly to 18 from 19, so essentially

steady,

> > but

> > > because I continue to lose weight, the plan is to activate me on the

> list

> > while

> > > proceeding with live donor testing. I seem to be having more trouble

> with

> > > edema now and if my memory serves me correctly, Pierre, I think you

had

> > more

> > > trouble with edema towards the end too.

> > >

> > > I am not going to be scheduled for fistula surgery until after I visit

a

> > CAPD

> > > session, and even then if it looks like I will be able to get a

> transplant

> > > quickly, they would prefer to just use a temporary catheter until I

can

> > get

> > > transplanted. The hope is that I can move to transplant and bypass

> > dialysis all

> > > together, but we will have to wait and see what the timing looks like.

> At

> > this

> > > stage, I guess things can change quickly or so I am told.

> > >

> > > , I did ask about a flu shot, and they did want me to have one

> because

> > > they feel it is likely that it will be several months before all the

> > testing is

> > > complete and a transplant could be scheduled, so they gave me one

today

> at

> > the

> > > clinic. I am certainly counting my blessings that I did not have to

> wait

> > in

> > > line for 4 + hours like many people are having to.

> > >

> > > SO, that is the scoop with me. I think the main thing they are

> concerned

> > > about is my weight dropping too low, and the fact that I am

symptomatic

> > this

> > > early in the game.

> > >

> > > Phyllis, to answer your question, yes, I do have HSP along with IgAN.

I

> > have

> > > tried Prednisone and Cellcept both in the past (Cellcept just earlier

> this

> > > year) but neither worked for me. I do not have the red spots or rash

> that

> > often

> > > accompanies HSP. I never have had that particular symptom of HSP for

> some

> > > reason.

> > >

> > > That is current status, and now I have to go monthly to both my Neph

and

> > the

> > > Renal Care clinic so I guess I will have monthly updates from here on

> out.

> > >

> > > Thank you all for your concern and caring for me! What a blessing to

be

> > > associated with such a great group!

> > >

> > >

> > >

> > > In a message dated 10/18/2004 2:19:32 PM Pacific Daylight Time,

> > > pjbpiano@... writes:

> > >

> > > > Do you have HSP? I hope that you don't see those red spots very

long.

> > Are

> > > > you on Pred. I'm weaning off pred and hope my HSP/IgA N doesn't

> return.

> > Let's

> > > > know about your updates. Phyllis

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Cy,

You sure do have me pegged! Yes, after a couple of stern talkings to from my

Neph, I have had to discard those rose colored glasses I love SO much :-)

I go to the PD consult November 15th, and you are right that my stubborness and

determination will carry me through once I make the decision.

I feel so bad for 's old teacher to have lost two kidneys. That is tough.

It is good to hear that PD has worked so well for her though.

On the flu shot, my Neph and his staff give me special treatment I think! They

set aside some vaccine for me and I am very fortunate to have gotten one, and

without waiting hours in line yet!

Thanks for your email.

Love

In a message dated 10/19/2004 11:08:22 PM Eastern Daylight Time, " Cy

Webb " writes:

>

>OH ,

>

>Since you seem to be slowly discarding those rose colored glasses, I'll have

>to put them on for you.  When are you going to do the CAPD session visit?

>That seems to be the gating event for getting the fistula.  I'm sure once

>your mind is made up, that great stubborness will get you through any

>attempts to persuade you with stuff you don't want.   Here's hoping from the

>bottom of my heart, that you manage to bypass this altogether.

>

>Had a wonderful dinner guest the other night - one of the teachers in

>'s old day care several years ago and her husband.  The woman has had

>two kidneys transplanted and lost, presently has been on PD for four years,

>awaiting kidney #3.  She was wearing a skin tight dress, no sign of

>catheter.  It's great having her back in our lives.    She travels a lot for

>family stuff so PD seems to work for her.

>

>Congrats on getting that flu shot!

>

>Love,

>

>Cy

>> >

>> > I saw my neph today, and had my second visit to the Renal Care clinic.

>I

>> > told them both that I had decided on Hemo, but both have asked me to

>visit

>> a CAPD

>> > session before getting my fistula surgery.  Both are urging me to

>consider

>> PD

>> > over Hemo.  My mind was already made up, but they feel with my work

>> schedule

>> > which causes me to travel very frequently, that PD would be better for

>me.

>> > SO, back to the drawing board on that decision.

>> >

>> > My GFR declined but only slightly to 18 from 19, so essentially steady,

>> but

>> > because I continue to lose weight, the plan is to activate me on the

>list

>> while

>> > proceeding with live donor testing.  I seem to be having more trouble

>with

>> > edema now and if my memory serves me correctly, Pierre, I think you had

>> more

>> > trouble with edema towards the end too.

>> >

>> > I am not going to be scheduled for fistula surgery until after I visit a

>> CAPD

>> > session, and even then if it looks like I will be able to get a

>transplant

>> > quickly, they would prefer to just use a temporary catheter until I can

>> get

>> > transplanted.  The hope is that I can move to transplant and bypass

>> dialysis all

>> > together, but we will have to wait and see what the timing looks like.

>At

>> this

>> > stage, I guess things can change quickly or so I am told.

>> >

>> > , I did ask about a flu shot, and they did want me to have one

>because

>> > they feel it is likely that it will be several months before all the

>> testing is

>> > complete and a transplant could be scheduled, so they gave me one today

>at

>> the

>> > clinic.  I am certainly counting my blessings that I did not have to

>wait

>> in

>> > line for 4 + hours like many people are having to.

>> >

>> > SO, that is the scoop with me.  I think the main thing they are

>concerned

>> > about is my weight dropping too low, and the fact that I am symptomatic

>> this

>> > early in the game.

>> >

>> > Phyllis, to answer your question, yes, I do have HSP along with IgAN.  I

>> have

>> > tried Prednisone and Cellcept both in the past (Cellcept just earlier

>this

>> > year) but neither worked for me.  I do not have the red spots or rash

>that

>> often

>> > accompanies HSP.  I never have had that particular symptom of HSP for

>some

>> > reason.

>> >

>> > That is current status, and now I have to go monthly to both my Neph and

>> the

>> > Renal Care clinic so I guess I will have monthly updates from here on

>out.

>> >

>> > Thank you all for your concern and caring for me!  What a blessing to be

>> > associated with such a great group!

>> >

>> >

>> >

>> > In a message dated 10/18/2004 2:19:32 PM Pacific Daylight Time,

>> > pjbpiano@... writes:

>> >

>> > > Do you have HSP? I hope that you don't see those red spots very long.

>> Are

>> > > you on Pred. I'm weaning off pred and hope my HSP/IgA N doesn't

>return.

>> Let's

>> > > know about your updates. Phyllis

>> > >

>> >

>> >

>> >

>> >

[Guest guest]

Thanks for your comments Pierre! I actually am concerned about the diaysis

fluid in my abdomen because I plan to keep up with my running, and that just

does not sound comfortable.

I agreed to go to the PD consultation because I have so much respect for my

Neph, but I really think that hemo is the best for me.

In a message dated 10/20/2004 10:30:47 AM Eastern Daylight Time, " Pierre

Lachaine " writes:

>

>The PD catheter is not as big a deal as we might assume. It's actually

>totally unobstrusive unless you're naked. It's very easily hidden in

>clothes, and, many people use a special fabric belt that holds it in against

>the skin at the waistline. I'm sure that it could easily be hidden out of

>mind under the right lingerie :-)

>

>What can be more visible than the catheter itself in normal street clothes

>is the tummy which is always filled with the dialysis fluid. It's more

>obvious on some than others, but I really never noticed anything

>particularly obvious on the women I've seen who are on PD (they were fully

>clothes and in public - I just thought I had better mention that).

>

>Pierre

>

>

> Re: update

>

>

>>

>> OH ,

>>

>> Since you seem to be slowly discarding those rose colored glasses, I'll

>have

>> to put them on for you.  When are you going to do the CAPD session visit?

>> That seems to be the gating event for getting the fistula.  I'm sure once

>> your mind is made up, that great stubborness will get you through any

>> attempts to persuade you with stuff you don't want.   Here's hoping from

>the

>> bottom of my heart, that you manage to bypass this altogether.

>>

>> Had a wonderful dinner guest the other night - one of the teachers in

>> 's old day care several years ago and her husband.  The woman has

>had

>> two kidneys transplanted and lost, presently has been on PD for four

>years,

>> awaiting kidney #3.  She was wearing a skin tight dress, no sign of

>> catheter.  It's great having her back in our lives.    She travels a lot

>for

>> family stuff so PD seems to work for her.

>>

>> Congrats on getting that flu shot!

>>

>> Love,

>>

>> Cy

>> > >

>> > > I saw my neph today, and had my second visit to the Renal Care clinic.

>> I

>> > > told them both that I had decided on Hemo, but both have asked me to

>> visit

>> > a CAPD

>> > > session before getting my fistula surgery.  Both are urging me to

>> consider

>> > PD

>> > > over Hemo.  My mind was already made up, but they feel with my work

>> > schedule

>> > > which causes me to travel very frequently, that PD would be better for

>> me.

>> > > SO, back to the drawing board on that decision.

>> > >

>> > > My GFR declined but only slightly to 18 from 19, so essentially

>steady,

>> > but

>> > > because I continue to lose weight, the plan is to activate me on the

>> list

>> > while

>> > > proceeding with live donor testing.  I seem to be having more trouble

>> with

>> > > edema now and if my memory serves me correctly, Pierre, I think you

>had

>> > more

>> > > trouble with edema towards the end too.

>> > >

>> > > I am not going to be scheduled for fistula surgery until after I visit

>a

>> > CAPD

>> > > session, and even then if it looks like I will be able to get a

>> transplant

>> > > quickly, they would prefer to just use a temporary catheter until I

>can

>> > get

>> > > transplanted.  The hope is that I can move to transplant and bypass

>> > dialysis all

>> > > together, but we will have to wait and see what the timing looks like.

>> At

>> > this

>> > > stage, I guess things can change quickly or so I am told.

>> > >

>> > > , I did ask about a flu shot, and they did want me to have one

>> because

>> > > they feel it is likely that it will be several months before all the

>> > testing is

>> > > complete and a transplant could be scheduled, so they gave me one

>today

>> at

>> > the

>> > > clinic.  I am certainly counting my blessings that I did not have to

>> wait

>> > in

>> > > line for 4 + hours like many people are having to.

>> > >

>> > > SO, that is the scoop with me.  I think the main thing they are

>> concerned

>> > > about is my weight dropping too low, and the fact that I am

>symptomatic

>> > this

>> > > early in the game.

>> > >

>> > > Phyllis, to answer your question, yes, I do have HSP along with IgAN.

>I

>> > have

>> > > tried Prednisone and Cellcept both in the past (Cellcept just earlier

>> this

>> > > year) but neither worked for me.  I do not have the red spots or rash

>> that

>> > often

>> > > accompanies HSP.  I never have had that particular symptom of HSP for

>> some

>> > > reason.

>> > >

>> > > That is current status, and now I have to go monthly to both my Neph

>and

>> > the

>> > > Renal Care clinic so I guess I will have monthly updates from here on

>> out.

>> > >

>> > > Thank you all for your concern and caring for me!  What a blessing to

>be

>> > > associated with such a great group!

>> > >

>> > >

>> > >

>> > > In a message dated 10/18/2004 2:19:32 PM Pacific Daylight Time,

>> > > pjbpiano@... writes:

>> > >

>> > > > Do you have HSP? I hope that you don't see those red spots very

>long.

>> > Are

>> > > > you on Pred. I'm weaning off pred and hope my HSP/IgA N doesn't

>> return.

>> > Let's

>> > > > know about your updates. Phyllis

>> > > >

>> > >

>> > >

>> > >

>> > >

[Guest guest]

Oh dear ,

I am very saddened to hear you have also taken a turn downward in your kidney

function. We were both running about the same. My GFR is down to 18 now, so

we are unfortunately still in about the same place. I completely understand

being anxious and excited at the same time.

I really want to encourage you that you having a chronic illness can bring

many very positive lessons to your daughter, although she may be too young to

comprehend them now. My daughters have learned compassion, empathy, a much

greater appreciation for life, the practice of daily counting our blessings just

to name a few.

We will get through these next steps together !

In a message dated 10/27/2004 7:44:36 AM Pacific Daylight Time,

taylorsummerell@... writes:

> A lot of you probably don't know me, but I'm been a lurker for over a year

> (reading every post diligently), and I post every once in a blue moon. So

> here goes...

>

> My creatine clearance has been hovering between 25 and 29 since I had my

> daughter in December of 2002. Before I got pregnant I had no idea anything

was

> wrong with me, and unfortunately my kidneys couldn't take the stress of being

> pregnant.

>

> In September I got the (bad) news that my creatnine had risen to 4.4 and my

> clearance down to 20. This news completely freaked me out. I have know

> since the beginning of all this that it was just a matter of time before my

> kidneys failed, but for some reason the 20% mark made it even more real to me.

I

> even started having panic attacks in July and have been taking Celexa for

> them.

>

> My neph has referred me to Medical College of Georgia for a transplant, so

> now we can begin testing my donors. I go tomorrow for the first time. It is

> an exciting but scary phase of my life. I find myself so conflicted about

> it. Sad that my kidneys have failed, anxious and excited to get a transplant,

> scared of the surgery and scared of the possibility of dialysis, sorry and

> sad for my not yet 2 year old daughter that she will never know a life without

> a sick mommy, and just very emotional in general. My husband has been

> wonderful, but I don't think he even understands some times.

>

> Anyway, I just wanted to vent for a little while - thanks for listening.

>

>

>

>

[Guest guest]

Hi ,

A creatinine of 5.2 is really getting up there. Are they not preparing you

for dialysis or transplant?

My GFR is only slightly below yours at 18%, but they are talking about me

needing dialysis or a transplant in about 6 months.

Take care of yourself!

\

In a message dated 10/27/2004 4:35:58 PM Pacific Daylight Time,

GNCCLEVENGER@... writes:

> >

> Hi ,

> I am 34 and 3 years ago was diagnosed with IGAN. On diagnosis My

> creatine was 4.5. 3 years later it is 5.2. My GFR is approx 20 % for

> 3 years. I get sad sometimes that I will never be healthy again, but

> I work with a woman that had a transplant 10yrs ago and she has done

> great.I am scared of the thought of having transplant or dialysis

> also, but part of me hopes I need it sooner than later so I might be

> able to have kids.I know how you are feeling and it is normal. Some

> days I have really good days and feel " normal " and other days it

> is " why me?'I also have a wonderful husband. I always try to tell

> myself that kidney failure isn't the end-I am glad I am not facing

> something worse like cancer or needing another organ. at least we can

> get a living donor. I try to look at the positive. sometimes good

> does come from bad stuff.

>

[Guest guest]

Just thought I'd update you all. I had surgery yesterday. It was a

lumpectomy and suppose to be a sentinel node but unfortunately, the

node was positive and they had to take out the whole set (I don't know

how many) of lymph nodes. So it looks like our road is going to be a

little longer and harder to travel. But, I am home today and feel

okay. Will see the surgeon next week for check up and then off to

oncologist after that. I was told it would be 4 weeks before any

treatment. Should know on Friday what pathology found in the lymph

nodes.

Barb

[Guest guest]

Hello Barb, I am glad you are home with no other difficult problems. Keep us posted on Friday's results. SharonC Tom & Barb wrote: Just thought I'd update you all. I had surgery yesterday. It was a lumpectomy and suppose to be a sentinel node but unfortunately, the node was positive and they had to take out the whole set (I don't know how many) of lymph nodes. So it looks like our road is going to be a little longer and harder to travel. But, I am home today and feel okay. Will see the surgeon next week for check up and then off to oncologist after that. I was told it would be 4 weeks before any treatment. Should know on Friday what pathology found in the lymph nodes.Barb

[Guest guest]

Barb,

Thanks for the update. I had one out of twenty three bad and its going to be 16 yrs in May since my surgery. Hang in there and try to think positive. You are in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.html

Check out my breast cancer ornaments at:http://www.geocities.com/chucky5741/bcornament.htmlalso check out my other ornaments and lots of nice gifts at:http://www.cancerclub.com

Update

Just thought I'd update you all. I had surgery yesterday. It was a lumpectomy and suppose to be a sentinel node but unfortunately, the node was positive and they had to take out the whole set (I don't know how many) of lymph nodes. So it looks like our road is going to be a little longer and harder to travel. But, I am home today and feel okay. Will see the surgeon next week for check up and then off to oncologist after that. I was told it would be 4 weeks before any treatment. Should know on Friday what pathology found in the lymph nodes.Barb

[Guest guest]

Barb,

Know you are being held gently and lovingly in our arms.

Ruth

>

> Just thought I'd update you all. I had surgery yesterday. It was a

> lumpectomy and suppose to be a sentinel node but unfortunately, the

> node was positive and they had to take out the whole set (I don't know

> how many) of lymph nodes. So it looks like our road is going to be a

> little longer and harder to travel. But, I am home today and feel

> okay. Will see the surgeon next week for check up and then off to

> oncologist after that. I was told it would be 4 weeks before any

> treatment. Should know on Friday what pathology found in the lymph

> nodes.

>

> Barb

>

[Guest guest]

-Prayers are being sent your way. Rest up after your surgery. Don't

try todo too much no matter how good you think you feel. The lymph

node surgery is sometimes harder than the breast surgery. Had mine 18

months ago.

Love Nancee-- In breastcancer2 , " Tom & Barb "

wrote:

>

> Just thought I'd update you all. I had surgery yesterday. It was a

> lumpectomy and suppose to be a sentinel node but unfortunately, the

> node was positive and they had to take out the whole set (I don't

know

> how many) of lymph nodes. So it looks like our road is going to be a

> little longer and harder to travel. But, I am home today and feel

> okay. Will see the surgeon next week for check up and then off to

> oncologist after that. I was told it would be 4 weeks before any

> treatment. Should know on Friday what pathology found in the lymph

> nodes.

>

> Barb

>

[Guest guest]

Thank you. I'm trying to take it easy. The drainage tube hurts, but hopefully if that stops I can have that taken out on Monday and I'll feel a whole lot better. It has slowed down to very little. Pathology report said that a couple lymph nodes were involved. Dr didn't say how many. He said the margins on the tumor were a little small at one point but didn't feel he needed to go back in and thought radiology oncologist would feel the same. Back to Surgeon on Wednesday for post-op check, will ask for pathology report at that time.

Re: Update

-Prayers are being sent your way. Rest up after your surgery. Don't try todo too much no matter how good you think you feel. The lymph node surgery is sometimes harder than the breast surgery. Had mine 18 months ago.Love Nancee-- In breastcancer2 , "Tom & Barb" wrote:>> Just thought I'd update you all. I had surgery yesterday. It was a > lumpectomy and suppose to be a sentinel node but unfortunately, the > node was positive and they had to take out the whole set (I don't know > how many) of lymph nodes. So it looks like our road is going to be a > little longer and harder to travel. But, I am home today and feel > okay. Will see the surgeon next week for check up and then off to > oncologist after that. I was told it would be 4 weeks before any > treatment. Should know on Friday what pathology found in the lymph > nodes.> > Barb>