Introduction

July 24, 2005

Walt,

After he said they could have been reversed he said ³NO way they could be

reversed . It just doesn¹t happen unless the cores were taken the same day.²

So he dropped it. It just didn¹t leave me feeling very good. I¹ll ask about

a DNA test.

Suzanne

>

July 25, 2005

Hi Suzanne,

How terribly frustrating for you to not know what your son's diagnosis is.

Alport's is a serious disease, and having the hearing loss in both your son's

ears would lead any Nephrologist to consider Alports.

I do hope there is some other way to determine his diagnosis short of having

to go through another biopsy.

I am so sorry you have to wait for the answers I know you are longing to

have. My heart goes out to you.

In a message dated 7/24/2005 11:58:39 A.M. Pacific Daylight Time,

suzanne_schleck@... writes:

Betsey,

The DNA test might be a good idea. Yes, my son has hearing loss in both ears

which is a major indicator for Alports. I¹ll discuss the test with the neph

next time.

Thanks for the input.

Suzanne

July 28, 2005

Betsey,

It is a relief to hear your son is doing well now. I don¹t know if my son

will need one someday or not. I was curious who your son feels on the meds

he takes now. Are there many side affects?

Suzanne

>

July 28, 2005

Suzanne,

Much less difficulty with side effects than we had expected actually.

Before the transplant, I figured it would be sort of a trade off,

that he'd obviously feel better with a new kidney but that the

immunosuppressants would make him feel bad in a different way. But in

fact, he says he feels fine. Right after the transplant when he was

on a high dosage of prednisone, the side effects from that were

bothersome but not impossible. He also had some problems with a toxic

buildup of Prograf, but then he was changed to Myfortic (similar to

Cellcept, but doesn't cause gastric problems) and takes that with

Rapamune and a low dosage of prednisone now. He does not seem to be

particularly vulnerable to colds and other infections and gets over a

cold about as quickly as anyone else. Overall it's been quite a miracle.

Betsy

> Betsey,

> It is a relief to hear your son is doing well now. I don¹t know if

> my son

> will need one someday or not. I was curious who your son feels on

> the meds

> he takes now. Are there many side affects?

> Suzanne

> >

July 28, 2005

Betsey,

How wonderful that your son feels so good. This is all very encouraging to

me. I am so glad to hear from you and all the other people on-line in the

group.

Today, I ran into a friend on the way to the pet store to buy new gold fish

for my pond. I had just killed all my fish by putting too much tap water

into the pond. She told me that she has had the same problem. The city water

has chloramines that are deadly to fish, birds and bad for kidney patients.

She told me a need to buy a filtration system for our tap water. Anyone

heard this before? Apparently, chloramines are worse that chlorine.

I¹ll research it now.

Suzanne

>

July 29, 2005

I know most cities use chloramine in the water rather than chlorine. I don't

know anything about how it might affect people who are healthy, nor those

who have kidney disease, but I do know it's deadly if it gets into the

dialysate on hemodialysis. This is why my hemodialysis setup at home

includes two large carbon tanks. They remove the chloramine. Before I turn

on the water purifier each treatment day, I first open the water tap, than I

test the water from the first carbon tank to ensure there's no chloramine

left beyond whatever parts per million is acceptable. The test takes about 8

minutes to complete. If the first tank shows positive, I test the second.

Should both every show positive for chloramine, I absolutely cannot dialysis

until the tanks are replaced.

After the tanks, my water goes through a reverse osmosis water purifier, and

then again, when it enters the dialysis machine itself, it is further

purified by a special filter on the back of the machine. It's similar to the

dialyzer which filters the blood, but it sort of pre-dialyzes the water

before it gets into the dialysate circuit. It ends up as what they call

" ultrapure water " .

In my earlier days with kidney disease, there was a time when I only drank

bottled water, but I gradually gave that up.

Pierre

Re: Introduction

Betsey,

How wonderful that your son feels so good. This is all very encouraging to

me. I am so glad to hear from you and all the other people on-line in the

group.

Today, I ran into a friend on the way to the pet store to buy new gold fish

for my pond. I had just killed all my fish by putting too much tap water

into the pond. She told me that she has had the same problem. The city water

has chloramines that are deadly to fish, birds and bad for kidney patients.

She told me a need to buy a filtration system for our tap water. Anyone

heard this before? Apparently, chloramines are worse that chlorine.

I¹ll research it now.

Suzanne

>

July 29, 2005

Pierre,

Thanks for your input on chloramines. My friend terrified me about the

dangers of it on people, fish and humans. I think it¹s not such a big issue

Apparently, it is neutralized when it enters our stomachs and becomes

harmless. I wonder though. MTBE was ³harm less² too .

>

> Reply-To: iga-nephropathy

> Date: Fri, 29 Jul 2005 07:03:36 -0400

> To: iga-nephropathy >

> Subject: Re: Introduction

>

> I know most cities use chloramine in the water rather than chlorine. I don't

> know anything about how it might affect people who are healthy, nor those

> who have kidney disease, but I do know it's deadly if it gets into the

> dialysate on hemodialysis. This is why my hemodialysis setup at home

> includes two large carbon tanks. They remove the chloramine. Before I turn

> on the water purifier each treatment day, I first open the water tap, than I

> test the water from the first carbon tank to ensure there's no chloramine

> left beyond whatever parts per million is acceptable. The test takes about 8

> minutes to complete. If the first tank shows positive, I test the second.

> Should both every show positive for chloramine, I absolutely cannot dialysis

> until the tanks are replaced.

>

> After the tanks, my water goes through a reverse osmosis water purifier, and

> then again, when it enters the dialysis machine itself, it is further

> purified by a special filter on the back of the machine. It's similar to the

> dialyzer which filters the blood, but it sort of pre-dialyzes the water

> before it gets into the dialysate circuit. It ends up as what they call

> " ultrapure water " .

>

> In my earlier days with kidney disease, there was a time when I only drank

> bottled water, but I gradually gave that up.

>

> Pierre

>

> Re: Introduction

>

> Betsey,

> How wonderful that your son feels so good. This is all very encouraging to

> me. I am so glad to hear from you and all the other people on-line in the

> group.

>

> Today, I ran into a friend on the way to the pet store to buy new gold fish

> for my pond. I had just killed all my fish by putting too much tap water

> into the pond. She told me that she has had the same problem. The city water

> has chloramines that are deadly to fish, birds and bad for kidney patients.

> She told me a need to buy a filtration system for our tap water. Anyone

> heard this before? Apparently, chloramines are worse that chlorine.

> I¹ll research it now.

> Suzanne

>> >

>

February 6, 2007

My Name is & I have been newly dianosed with Invasive Ductal

Carsinoma-Right Breast. Surgery date Feb. 8th -- Bilateral

Mastectomy " Simple left breast (my choice) - Modified Radical Right

Breast.

I had a mammogram Oct.26, 2006 that showed a mass. I didn't want to

upset my children over the holidays so I did not go for the

compression films until Jan. 3rd, 2007. I was sent to a surgeon on

Jan. 8th, 2007. I had a surgical needle biopsy on Jan. 11th, 2007. I

was diagnosed with breast cancer Jan 15, 2007.The first thing that

went through my mind was " no breasts? " What? Last year on Oct.

28th,2005 I had a complete hysterectomy. Now they want my breasts?

Then my thoughts quickly went straight to losing my long hair. I

went through thoughts of self pitty of " What am I now...what makes

me female? " Kinda past that. I'm focusing more on living now.I had

my apt. with my oncologist. My surgery date has been set, Feb. 8th,

2007. I saw a plastic surgeon about reconstruction Feb. 1st, 2007. I

know what I need to do to live for my children,my grand children

and " Myself " . My coworkers, friends and family have bee wonderfully

supportive. I found I have friends I didn't know I had. I've been

told by my oncologist I will have to have to have chemo and have set

up my apt. to set up my schedule-three weeks after sugery. I have a

little planner, keep lots of notes, and have started a journal. This

helps me keep my mind straight and when I start losing hope I go

back and read my notes...days when I felt down and then days when I

was full of hope. I suprise myself sometimes at how strong I am. A

friend/co worker sent me to The Amercan Cancer Society site and told

me to read. One of my fears was the affect my hairloss would have

not just on me but my oldest grand daughter and my middle son (he is

moms boy and is taking this hard). After reading everyones comments

I have a better feeling about the whole hairloss thing. I feel

better about having already decided to gradually start cutting my

hair. I am going to cut it shoulder lenght right after sugery. Then

cut it short when I begin chemo. When the hair begins to fall out I

will have it shaved. I have not decided if I want a wig I think I

personally would feel better with scarves and hats (more my

personality) though others have been pushing the wig idea. After

reading everyones comments I think I can compromise some for my

friends and family. I will get a wig for that occassion where they

or I would feel more comfortable with that appearance. " But " after

browsing sites I see that I am not the only one who wants to go

natural. I can do what feels good for me without guilt but

compromise and wear the wig for those occassions where those around

me might not be so comfortable.

I am 45.

Divorced.

Born, raised and still reside in Iowa. Grew up a farm girl moved to

the city...btw you can not take the farm out of the farm girl.

Mother of 2 boys 26 and 23, 1 daughter 16.

2 absolutely lovely daughter in laws and 1 very nice boyfriend of my

daughter.

3 grand-daughters 4, 2, 5 mths and 1 due in April.

Yet 1 more grandchild due in October (hope its a boy but a girl

would be fun---imagine " Grandmas BIG sleepover " .

I Work as a clerk in a Pediatric Unit in a hospital in Omaha, Ne.

Im looking for others who have walked im my shoes to correspond with.

Thats justme-justdenise

February 7, 2007

Hi ,

Girlfriend, you already sound like you know what your doing!! Good for you..

Your posting was nothing but a ray of inspiration!! God Bless You! Your

positive attitude and journaling with get you thru all this... there will be

good and bad days, but thats what we are all here for. I'm new myself and I

love this group of women.. I feel like they are all family. Everyone is at

different stages and thats what makes the group so welcoming and understanding,

who's been there, done that, starting this, or trying that! It sounds like

everything is in order for you and it will be a matter of just getting started

and moving on with it. I wish you the best of luck and hope to keep hearing

from you,

Peace and Prayers,

Michele

justdenise61@...> wrote: