Introduction

August 13, 2003

Welcome ,

I've only had 1 surgery so far, my TT in July, so I can't answer your

question. I just wanted to take a moment to welcome you to " the group

none of us wanted to join " . I hope you find the support and answers you

are looking for here.

in PA

age 30 (6/21)

dx pap by FNA 6/27/03

TT 7/17/03-main lesion 2.1x1.9x1.0cm on isthmus, multi-focal-pinpoint

(1-3mm) lesions throughout both lobes, 1 lymph node

Accidentally got a parathyroid, couldn't remove from thyroid

RAI scheduled 10/7/03

~Our lives can change with every breathe we take... let go of the past...

and embrace the future.~

August 13, 2003

Thanks for welcoming me to the group. I need a lot of support at this moment. I

keep asking myself why me. I am currently working on my doctorate and I have had

to drop one class at the moment. Do you have children? This has put my family on

hold.

in Atlanta

kidd kidds@...> wrote:

Welcome ,

I've only had 1 surgery so far, my TT in July, so I can't answer your

question. I just wanted to take a moment to welcome you to " the group

none of us wanted to join " . I hope you find the support and answers you

are looking for here.

in PA

age 30 (6/21)

dx pap by FNA 6/27/03

TT 7/17/03-main lesion 2.1x1.9x1.0cm on isthmus, multi-focal-pinpoint

(1-3mm) lesions throughout both lobes, 1 lymph node

Accidentally got a parathyroid, couldn't remove from thyroid

RAI scheduled 10/7/03

~Our lives can change with every breathe we take... let go of the past...

and embrace the future.~

August 13, 2003

Your welcome! Yes I have two children, one turned 4 the day before my

surgery, and my son will be 20 months at the end of August. We were in

the process of " thinking about the 3 " meaning in a few months, we were

going to try for a third. But that of course has been postponed. I was

also supposed to start my trek towards my Master's. I want to get it in

Social and Cultural Anthropology, that is what my BA is in. We were

trying to organize the whole GRE preps, testing, application process with

my husband's impending Naval career...the goal was to have me through all

of the prep stuff, and reading to apply and start school whereever his

first station is after OCS and Business School in GA. So by about Sept of

2004. However, I will be getting ready for my 2nd scan just about that

time. Between the kids and Thyca, I can't handle more.... especially with

my husband being gone for 3 months for OCS starting Nov 15, and then will

probably have a 6 month deployment come Fall 2004 or Spring 2005. I know

that seems a long ways off to worry/plan... but that's my style.... I like

to try and have a few things lined up.... I'm always juggling about 10

balls at once, so if I'm going to add an 11th.... I need to research it

and attempt to plan.... Anyways, what is your doctorate in? It's so

funny, my hubby just finished his MPA in May, it was MY turn to do

something! But my something wasn't supposed to be " Thyca " ! LOL I just

noticed you're in Atlanta... we'll be in Athens in March! In response to

the " why me? " Oh, I've shed quite a few tears today over that question.

I have good days and bad days, or maybe not-so-good days sounds better.

I've really been feeling a little sorry for myself... But I'm strong, I'll

get through it...

sooner or later, lol. Feel free to email me anytime.... It's nice to be

able to " talk " with people about Thyca without having to hand them a

dictionary and a pen and paper so they can take notes and get back to me

when they start to " get it " . It's too much info for the non-thycan, I

guess. Gotta run....

in PA

Thyca writes:

>Thanks for welcoming me to the group. I need a lot of support at this

>moment. I keep asking myself why me. I am currently working on my

>doctorate and I have had to drop one class at the moment. Do you have

>children? This has put my family on hold.

>

> in Atlanta

>

> kidd kidds@...> wrote:

>Welcome ,

>

>I've only had 1 surgery so far, my TT in July, so I can't answer your

>question. I just wanted to take a moment to welcome you to " the group

>none of us wanted to join " . I hope you find the support and answers you

>are looking for here.

>

> in PA

>age 30 (6/21)

>dx pap by FNA 6/27/03

>TT 7/17/03-main lesion 2.1x1.9x1.0cm on isthmus, multi-focal-pinpoint

>(1-3mm) lesions throughout both lobes, 1 lymph node

>Accidentally got a parathyroid, couldn't remove from thyroid

>RAI scheduled 10/7/03

>

>~Our lives can change with every breathe we take... let go of the past...

>and embrace the future.~

>

August 13, 2003

Hi ,

You have come to a group full of knowledge and helpfullness.

You will find answers to lots of your questions here.

I had the left half of my thyroid surgically removed in 1972

(no cancer); the right half removed in 1994 (follicular cancer).

After 2 radioactive iodine treatments, I had no problems for 6

years. Jo in AZ

> Hello To All,

>

> First let me start by introducing myself. My name is and I

had/have papillary cancer. My first surgery was at the age of 30 and

the second one was 3 months before I married in 2001. I am praying

this will be my last surgery on Aug. 27th. I find it hard to believe

that I am having a 3rd surgery. I would like to know if anyone has

had more than one surgery and what has been the outcome. I almost

forgot I have been teaching for 10 years. If this continues with my

health I plan to teach part time. This has put family plans on hold.

Along with the cancer I have MS. I am to the point of cracking up.

Thanks for listening.

>

February 14, 2005

Sophia,

Welcome to the group, everyone is here for support and really great. Have

a good week. I'm just trying Core myself so will let you know how I'm doing.

Marge

February 14, 2005

Welcome Sophia. Good luck with CORE. There are quite a few doing that

program on this group, so I'm sure you will find support.

Introduction

Hello Everyone,

My name is Sophia and I am new to this loop. I'm currently on the Weight

Watcher's Core Program. I was on Flex Points and lost 25 pounds last year,

reaching the upper limits of my goal weight. I've gained about 7 pounds back

and would really like to get down to the lower weight of my goal range. So,

I'm trying CORE, starting today. Thought it would help to make myself

accountable by posting here. Thanks for being here.

Blessings,

Sophia

__________________________________________________

February 26, 2005

Hi Candee, and Welcome to SWW! I don't personally go into the chat room but

do often check posts throughout the day. You'll find great support here!

Bette in CA

February 26, 2005

Hi, Netcandy. Welcome to the group. I don't ever use the chat. Usually we

post here and carry conversations at leisure. This is a terrific group.

Welcome aboard.

Introduction

Hello Everyone! I'm new to weight watchers, currently on my second

week and doing well. I'm 39, female, in Ohio, currently 252 with a

short term goal of 190. I attend meetings at my workplace and have a

great support system there. I'd like to find support on the internet

as well. I've been in the group chat room several times and have yet

to see anyone else there. Are any of using the chat room?

April 26, 2005

hi Chantel..nice to see you here.

Shirley

Introduction

Hi. My name is Chantel and I just rejoined WW today. I've been a

member before and had a short lived success. That was in 2000. I've

joined a few times since then but never stuck with it for more than a

few weeks. I'm really hoping that I will do better this time. It's

so hard to get started - I really feel like I'm on a diet and I'm

restricted. I know that I just need to learn how much food I really

need and not think that I can eat whatever I want to. My boyfriend

was encouraging me to look into weight loss surgery, but I can't help

thinking this is something I should be able to do on my own. The

tough part is, I know all the right things to do, but I can't seem to

find the motivation and discipline. I hope that I will be able to

find some support here. Thanks.

Chantel

------------------------------------------------------------------------------

June 10, 2005

Welcome to the group, Elloise. Good luck with the second biopsy. It will be

very interesting to see what it shows. Not too many people have second

biopsies.

Pierre

Introduction

> Hello everyone -

>

> I just wanted to post a quick introduction. I've been reading about

> all of you and thought it rude to not say hello.

>

> I was diagnosed with IGAN in 2001 after a kidney biopsy. Doctors

> said chances were I had had it much longer, but that it seemed I was

> being treated for individual symptons instead of anyone looking at me

> as a whole. (sudden high blood pressure, swelling in the legs and

> ankles, extreme headaches and fatigue) At that time I was started on

> Lisinopril, Lipitor, and fish oil. Since then we have added Lasix to

> the list along with Potassium. Diagnosis was we seemed to have

> caught it early and vist every six months.

>

> Well, went to the doc on Monday and it seems that all the levels that

> had been stable every six months have decided to increase this last

> set of labs. It's a new doc so we spent a lot of time going over

> past labs and history. He wants to do another biopsy to see what the

> damage difference is between 2001 and now and if we need to add

> steroid treatment or something else.

>

> I found this group via the website Pierre has on IGAN - a lot of good

> information and I've sent the link to my family. They are all in the

> first few stages of acceptance (anger, denial, etc). I've come to

> accept what's going on and as long as the doc hasn't said dialysis

> I'm okay with this.

>

> With that said, however, I am a bit nervious about this second biopsy

> (scheduled for Tuesday) and it's results. I'm really happy to have

> found a group of people who are in the same " boat " and I can talk

> about this without having to explain everything we know or don't know

> about IGAN.

>

> I look forward to getting to know you all better.

>

> Elloise

>

June 13, 2005

Thanks Pierre! I was surprised when he mentioned the biopsy, I didn't

think many people would go through it a second time. I didn't enjoy

it the first time, so it's not on the top of my list of things to do

The first biopsy report said " thirty-eight glomeruli are present in

the light microscopy sections with four glomerul completely

sclerosed. " So it will be interesting to hear how much more damage

has happened between 2001 and present. I just ran a full spectrum of

labs the other day to rule out any other " family history ailments "

being the cause of the increased levels.

I want to thank you for opening up your life to us and the wealth of

information you have on the website. I've been reading what you and

Ray have been saying about the home hemo - I'm glad you have the

opportunity to do that vs going to the hospital all the time.

Best of everything and I'll post after the biopsy.

Elloise

In iga-nephropathy , " Pierre Lachaine "

wrote:

Welcome to the group, Elloise. Good luck with the second biopsy. It

will be very interesting to see what it shows. Not too many people

have second biopsies.

Pierre

July 22, 2005

Hi, Suzanne -

Welcome to the group. My son also was diagnosed at 13 and had no

symptoms other than occasional dark urine (usually just when he had a

URI) for about 4 years, then he began a gradual decline and we did a

transplant when he was 21. He was treated with prednisone, an ACE

inhibitor, and fish oil until his kidney failure was more advanced

and required symptom management. He is 25 now and doing well.

good luck -

Betsy

> Thank you Walt for asking me to repost my introduction that got side

> tracked.

>

> I am the mother of a 13 year old son who was diagnosed with IgAN

> about 3

> weeks ago. He feels fine. The only visible sign is dark urine (all the

> time). He started Losinipril and 4 packs of Coromega fish oil daily.

>

> I want to learn as much as possible about the disease and treatment.

>

> The terms on the lab reports are little different than the ones I

> see other

> places. Which of these match up to serum creatinine. Proteinurea,

> serum

> potassium, etc?

>

> These terms are on my sons labs:

> Albumin-creatinine ratio in mcg/ng

>

> Serum creatinine in mg/dl

>

> Random creatinine- what¹s normal?

> microalbumen/creatinine ratio

> Random urine microalbumin- what¹s normal?

>

> Urine protein-creatinine in mg/mg

>

> c3 and c4

>

> Help! I¹m confused.

>

> Also what is creatinine?

> Thanks, Suzanne

>

July 22, 2005

Thank you for your message. You have seen it all by now. I think you may be

able to answer my questions as time goes by.

I am very glad to hear your son is doing well now.

The pediatrician called me today to tell us not to take 4 grams of fish oil

She said we should start with 1 gram because of nose bleeds and bruising. So

we will back down to one. The doctors have different opinions.

Thanks,

Suzanne

July 22, 2005

Hi Suzanne,

C3 and C4 are very specialized proteins that are important in an immune

response. For some kidney diseases such as MPGN and lupus, C3 and C4 are

frequently low. In these diseases, some docs think that low values

correspond to active disease. Generally, however, for IgAN patients, C3 and

C4 are not important. Docs might test for them several times, but if they

are normal, they'll stop looking at them. Was your son's diagnosis by

biopsy?

Good luck learning about kidney disease. You have certainly come to the

right place.

Cy

Introduction

Thank you Walt for asking me to repost my introduction that got side

tracked.

I am the mother of a 13 year old son who was diagnosed with IgAN about 3

weeks ago. He feels fine. The only visible sign is dark urine (all the

time). He started Losinipril and 4 packs of Coromega fish oil daily.

I want to learn as much as possible about the disease and treatment.

The terms on the lab reports are little different than the ones I see other

places. Which of these match up to serum creatinine. Proteinurea, serum

potassium, etc?

These terms are on my sons labs:

Albumin-creatinine ratio in mcg/ng

Serum creatinine in mg/dl

Random creatinine- what¹s normal?

microalbumen/creatinine ratio

Random urine microalbumin- what¹s normal?

Urine protein-creatinine in mg/mg

c3 and c4

Help! I¹m confused.

Also what is creatinine?

Thanks, Suzanne

July 22, 2005

Hi Suzanne,

I just reread your post and noted that your son is on fish oil. There is a

link to the original paper by Donadio about fish oil on our sister web site

www.igan.ca that you might find interesting reading.

Cy

Introduction

Thank you Walt for asking me to repost my introduction that got side

tracked.

I am the mother of a 13 year old son who was diagnosed with IgAN about 3

weeks ago. He feels fine. The only visible sign is dark urine (all the

time). He started Losinipril and 4 packs of Coromega fish oil daily.

I want to learn as much as possible about the disease and treatment.

The terms on the lab reports are little different than the ones I see other

places. Which of these match up to serum creatinine. Proteinurea, serum

potassium, etc?

These terms are on my sons labs:

Albumin-creatinine ratio in mcg/ng

Serum creatinine in mg/dl

Random creatinine- what¹s normal?

microalbumen/creatinine ratio

Random urine microalbumin- what¹s normal?

Urine protein-creatinine in mg/mg

c3 and c4

Help! I¹m confused.

Also what is creatinine?

Thanks, Suzanne

July 23, 2005

Yes, he had a biopsy. I¹m struggling with the lab report terms...Would

albumin to creatinine ratio be the same as serum creatinine? Would random

urine total protein be the same as gross proteinuria on the labs? There is

no BUN listed at all. The random urine creatinine progresses over 3 months

from 70 mg/dl in April to 259 in July. That is off the chart. I don¹t get

it.

Thanks, Suzanne

July 23, 2005

Hi Suzanne,

My son's doc tells me that an albumen to creatinine ratio is pretty much the

same thing as a protein/creatinine ratio. The lab used to do

protein/creatinine ratios - which changed recently to albumen/creatinine

ratios. This is a way of measuring urine protein in children. In essence,

urine protein fluctuates widely so you have to either measure it for an

extended period (like a 24 hour urine sample) or compare it to something

that says relatively constant like urine creatinine. An albumin/creatinine

ratio is not the same as serum creatinine. The albumen creatinine ratio

involves testing a urine speciment and serum creatinine is based on a blood

specimen. BUN is also based upon a blood specimen.

Hope this helps.

Cy

---- Original Message -----

To: " moderator- Pierre " iga-nephropathy >

Sent: Friday, July 22, 2005 11:36 PM

Subject: Re: Introduction

Yes, he had a biopsy. I¹m struggling with the lab report terms...Would

albumin to creatinine ratio be the same as serum creatinine? Would random

urine total protein be the same as gross proteinuria on the labs? There is

no BUN listed at all. The random urine creatinine progresses over 3 months

from 70 mg/dl in April to 259 in July. That is off the chart. I don¹t get

it.

Thanks, Suzanne

July 23, 2005

A very warm welcome to you Suzanne. I am sorry to hear your son has IgAN.

There are so many parents of patients here on this board so hopefully you will

feel very supported and encouraged here.

It always breaks my heart to hear of a child with any chronic disease. I am sure

it has to be hard on your Mother's heart.

Welcome again!

July 23, 2005

Thank you CY for the explanation. I¹m logging the info for our next

appointment so I¹ll be ready with questions.

We had a crazy experience after my sons biopsy. Two weeks before the biopsy,

the neph told us he was pretty sure my son had Alports and that that is what

the biopsy would show. (Well then, why have the biopsy?) At our first

appointment after the biopsy, he announced that it was weird but another boy

he had biopsied 2 days prior (to my son¹s biopsy), he was sure had IgAN. He

was surprised that his diagnosis of the two boys were wrong and backwards.

The labs showed the opposite to his surprise. He said maybe the lab

switched the samples and the results were reversed. He said that maybe my

son does have Alports. That was great news. He then assured us it was

impossible for the lab to mix up samples. He said though we should get

another biopsy off in the future. This all was not reassuring.

>

> Reply-To: iga-nephropathy

> Date: Sat, 23 Jul 2005 10:50:27 -0700

> To: iga-nephropathy >

> Subject: Re: Introduction

>

> Hi Suzanne,

>

> My son's doc tells me that an albumen to creatinine ratio is pretty much the

> same thing as a protein/creatinine ratio. The lab used to do

> protein/creatinine ratios - which changed recently to albumen/creatinine

> ratios. This is a way of measuring urine protein in children. In essence,

> urine protein fluctuates widely so you have to either measure it for an

> extended period (like a 24 hour urine sample) or compare it to something

> that says relatively constant like urine creatinine. An albumin/creatinine

> ratio is not the same as serum creatinine. The albumen creatinine ratio

> involves testing a urine speciment and serum creatinine is based on a blood

> specimen. BUN is also based upon a blood specimen.

>

> Hope this helps.

>

> Cy

>

> ---- Original Message -----

>

> To: " moderator- Pierre " iga-nephropathy >

> Sent: Friday, July 22, 2005 11:36 PM

> Subject: Re: Introduction

>

> Yes, he had a biopsy. I¹m struggling with the lab report terms...Would

> albumin to creatinine ratio be the same as serum creatinine? Would random

> urine total protein be the same as gross proteinuria on the labs? There is

> no BUN listed at all. The random urine creatinine progresses over 3 months

> from 70 mg/dl in April to 259 in July. That is off the chart. I don¹t get

> it.

> Thanks, Suzanne

>

July 23, 2005

Suzanne:

I'm not an expert in this area -- maybe Pierre could verify. But if they

really think the samples were reversed, wouldn't it make more sense to just

do a DNA test now to make sure the tests weren't reversed. It would seem a

whole lot easier and cheaper than doing another biopsy sometime in the

future. I don't know how long they keep the tissue slides around, but that

would seem a whole lot cheaper than to go through another surgical procedure

in the future...

Walt

_____

From: iga-nephropathy

[mailto:iga-nephropathy ] On Behalf Of Suzanne Schleck

Sent: Saturday, July 23, 2005 11:17 PM

To: moderator- Pierre