New Here

[Guest guest]

Hi Nix,

I am so sorry for your losses, but I am glad that you found us. I had an ep

in July 99 and lost my rt.tube. I joined this group in January and it was a

complete livesaver!! The women here are wonderful and you will find so much

hope being here. There are women here with one tube who are currently pg so

don't give up hope. Please take care.

Love,

Sheila

[Guest guest]

nix,

sorry for your losses but glad that you found us.

There's lots of success stories here... lots of women with one tube with

healthy babies.

hold on, there is hope and I promise you , it DOES get better.

I had my ep last aug. lost my right tube. I got pg in Jan with only one

tube and O'd on the side without the tube. Unfortunitely, I had a m/c but I

just started ttc again and have lots of hope...

we are here for you.

lisa r

[Guest guest]

Nix,

Thanks for your good wishes!

We too are sorry you had reason to find us, but glad that you did.

There are a LOT of women in this group with positive stories of

healthy babies even after several ectopics, tube damage or loss, etc.

My EP was only last month so I'm not yet among them, but this group

has given me so much hope and support and I wish the same for you.

((( hugs )))

> Hello everyone,

>

> Wish I didn't have to be here, but glad there is a place like this

to come for support.

>

> I had surgery for an ectopic 2 weeks ago today. I was 7 weeks

along and they had to take my left tube, baby and tube had become

one. It was an emergency, so I didn't have much time to prepare, I

collapsed with pain and they found 3 litres of blood in my abdomen.

I also had a m/c at Christmas. I am wondering if there is any chance

of a healthy pregnancy after this? The surgeon said my other tube

was fine and both ovaries look healthy. Any success stories out

there?

>

> Wishing everyone luck!

>

> Nix

>

>

> ----------

> Get a fun email address at http://another.com

> COOL: Personalise a t-shirt with your name/email/slogan

> from 9.99 pounds. CLICK HERE http://another-shop.com

>

>

[Guest guest]

Nix,

I am so sorry you have a reason to be here, but so glad you found us. I

have received a ton of comfort and support from this wonderful group. I

lost Andras on June 14 when my tube ruptured in the ER (I was 8 weeks

along). I lost my baby and my left tube. I am not pg yet, but received the

final word on Friday that we can start ttc as soon as we feel emotionally

ready. If you are concerned about ttc, talk to your OB/GYN...Mine has been

GREAT in answering questions and meeting with me to resolve some anxieties!

Please take time to heal and be patient with your body. Also, do something

nice for yourself every day. I enjoy a cup of tea and was relaxing in a hot

bath as soon as the incision healed.

hugs,

anna-marie

^A^ ^A^ ^A^ ^A^ ^A^ ^A^ ^A^ ^A^ ^A^ ^A^

-Marie Rieffer

mommy to angel Andras Audun

sent to heaven June 14, 2001

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.281 / Virus Database: 149 - Release Date: 9/18/2001

[Guest guest]

nix

sorry to hear about your ep (2weeks ago) and your m/c (in Dec), but i am

glad that you found us. i had an m/c april 2000 and an ep august 2000. i

didn't lost my tube, but the drs are sure it is blocked. but, i am now

currently 11 weeks pregnant.

there are many success stories here. and i am sure very soon you will be

one. and yes, there is definately a chance for a healthy pregnancy. good

luck, darling.

love

Crystal

[Guest guest]

Hi, Cynda -

Welcome to the group.

You already know more than I knew when I went in for surgery.

Do you know what type of thyroid cancer you were diagnosed with?

You'll surely be hearing from lots of other members, but most of us find the

surgery to be relatively easy, especially if you've ever had any other surgery

to compare it to.

The " weak and tired " bit both sums it up, and at the same time, doesn't begin to

describe it. One of our most frequently used expressions around here is

" YMMV " - your mileage may vary, meaning that we all

have different experiences of pretty much the same processes. Chances are

you will become increasingly tired, " brain fogged " , probably edemic. You may

well find yourself starting a sentence and

wondering what the heck you had planned to say, or entering a room and wondering

why. It's not painful, it's just ... different.

Did your doctor happen to mention a low iodine diet? Not all doctors bother

recommending it, but many do, and it's one of those things that makes intuitive

sense, and doesn't need a prescription. The

idea is to deprive your body of nutritional iodine for the 2 weeks before the

RAI, so that your thyroid cells be " hungry " for the RAI, thus improving both the

scanning and the treatment. If you want to know

more about it, just ask, and we can send you to all sorts of information.

Also, if you haven't already been maintaining copies of your records, now's a

good time to start. It's one of those things that comes in handy in all sorts

of ways, some of which you won't know until the

situation arises. It's also an excellent way to learn about your diagnosis,

and to stay on top of your treatment.

Keep reading the letters here; don't be scared by anything you may read

(remember, YMMV), and please ask any questions that come to mind. You will be

amazed at how much you will learn in a short period

of time.

NYC

TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; clean scan 3/02;

current TSH ~.06

(for help in deciphering this, and for other frequently used abbreviations, see

http://groups.yahoo.com/group/Thyca/message/21248 )

Cynda Stoffle wrote:

> Hello all!!

> I am new to this group and wanted to introduce

> myself. I was just recently diagnosed with Thyroid

> Cancer and will have surgery Sept. 2nd. I am finding a

> lot of information about this online, but would so

> appreciate any information that you all could provide.

> My Dr tolde that after surgery, they would deplete my

> body of any thyroid hormone and that it would leave me

> weak and tired.. can anyone elaborate about this? I

> look forwartd to getting to know you and look forward

> to hearing from you.

> Take care,

> Cynda

[Guest guest]

Cynda Stoffle wrote:

> Thank you so much, it did help. Can you tell me what

> the significance is of Papillary Cancer Stage 3? I'm

> a little lost on a lot of this stuff still.

Cynda -

OF COURSE you're still lost on a lot of this stuff! It's all so new!

Staging really doesn't have the same meaning for thyroid cancer as it does for

most other cancers. In fact, many doctors don't bother staging it (or so they

say). But if you want to read about is,

there's a great explanation of some of the different staging systems at

http://cpmcnet.columbia.edu/dept/thyroid/staging.html

NYC

[Guest guest]

Hi Clara, welcome! Congrats on your weight loss and the very best to

you...~~Kallie~

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

In Serious-Weight-Watchers , " Clara Jean Lane "

wrote:

>

> Hi my name is Clara

[Guest guest]

Welcome, Clara! Another cancer survivor here. I am in my

fifth year of survival since diagnosis and still in treatment.

You are right; you change the way you live once cancer knocks

on your door. Also, married to the love of my life... and

I have lost in the neighbood of 40+ lbs. since the beginning

of January. I hope to step it up a bit now that the days

are getting warmer.....

Best,

Clara Jean Lane wrote:

>

> Hi my name is Clara I weigh 292.5 now. But on 2/1/05 I weigh 315. I

> walk 2 miles a day and that last half mile is a killer. I do weight

> watchers at home because I am on s.s. retired. I am 61, raised 9 step

> children, 2 adopted. I am married to a wonderful man. I have had colon

> cancer its all gone for now. I have had a heart attack,kidney removed

> and I am a diabetic. After I had cancer I look at life 1 day at a time

> and enjoy it. Well bye for now

>

> Best of luck to all

>

> Clara

> ,

>

>

>

>

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

>

[Guest guest]

Hi Shirley, I'm fairly new here too. I am doing the ww winning points. I'm

unable to attend meetings so I do it at home and with the support of this group.

So far I'm down 12 lbs *S*

welcome

Kiti

sas sas@...> wrote:

Hi..I am new here and new to WW. Just starting core.

Shirley

[Guest guest]

Hi Kiti..I also have not attended any meetings...we live in the country and the

drive is out of the question. I have been trying to decide points or core.

How did you decide on points?

Shirley

Re: new here

Hi Shirley, I'm fairly new here too. I am doing the ww winning points. I'm

unable to attend meetings so I do it at home and with the support of this group.

So far I'm down 12 lbs *S*

welcome

Kiti

sas sas@...> wrote:

Hi..I am new here and new to WW. Just starting core.

Shirley

[Guest guest]

laughing, it was easy I had the books with the winning points! I had tried

going to meetings about a year or so ago and gotten all the information but my

crazy work schedule kept changing and I could never plan when I would be able to

attend a meeting. My MIL is also doing the winning points and she attends

meetings, so we share recipes and tips we find, or that she gets at her

meetings. I had thought of doing the online program but I honestly think since

I can't attend meetings I get the same support from this group, and others I am

in. Plus the personal support of my hubby and his mom.

Kiti

sas sas@...> wrote:

Hi Kiti..I also have not attended any meetings...we live in the country and the

drive is out of the question. I have been trying to decide points or core.

How did you decide on points?

Shirley

[Guest guest]

Welcome to the group.

In kidney disease, there are terms used to describe specific diseases (like

IgA nephropathy, for example), and terms to describe the physical

characteristics of the renal injury. Focal is such a term, and

glomerulonephritis is just a general term that encompasses all kinds of

kidney diseases where there is inflammation in the glomerul - IgA

nephropathy is part of that group. For a better idea of what focal means, go

to the Glossary section of our website, www.igan.ca

Right now, you have mild proteinuria and blood in the urine, but you

apparently have no loss of actual kidney function, at least not judging from

your creatinine and creatinine clearance numbers. I had numbers like that

more than 25 years before I had to start dialysis. So the goal for you at

this point will be to keep that proteinuria under control (it's already

pretty good, comparatively), and to prevent the disease from progressing as

much as possible (the BP med is for that). The blood will probably go on its

own, and it may come back from time to time. Statins are also thought to

help slow progression to some extent, as well as to control high

cholesterol. Higher cholesterol tends to go hand in hand with proteinuria.

Were you borderline diabetic before, or only since you started on the

diuretic? I ask because diuretics can sometimes push people into diabetic

territory. Ask your doctor about this, just in case. I think it would be

imperative to control the diabetes if you have it, because that will

definitely not be helpful in preventing the progression of nephropathy, not

to mention all the other things that diabetes can do. Diabetes often causes

a kind of nephropathy on its own.

Good luck.

Pierre

New Here

> Hi to all that are a part of this group.

>

> I was diagnosed with IgAN and have also heard the term focal

> glomerulonephritis used, are these two diseases one in the same?

>

> I'm just beginning to learn about this disease, it's impact on daily life

> and the course it takes throughout the years.

>

> My recent labs show 300 proteinuria, large amounts of blood in urine, 65

> serum creatinine, creatinine clearance 2.37.

>

> I currently am on blood pressure meds, stanin and diuretic. My doctor

> told me that my blood glucose numbers are leaning towards diabetes so

> perhaps after my next appointment I'll have whatever medication is used to

> control diabetes added to the daily mix.

>

> Do these numbers sound like what others are experiencing?

>

> Cat

>

>

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

> Start your day with Yahoo! - make it your home page

>

>

[Guest guest]

Hi Cat,

A very warm welcome to the group. Pierre has already answered your

questions about glomerulonephritis and IgAN, but I just wanted to welcome you

too.

Your labs look very good and obviously the goal is to keep you stable where

you are. Please do keep a very close eye on the glucose and/or A1C levels

because diabetes all by itself is a risk factor for kidney failure.

The other thing that is very important is keeping your blood pressure at a

good level. Once you are diagnosed it is important to be monitored regularly

to keep abreast of any changes. With your levels, that may only be once or

perhaps twice a year, but I just want to make sure your glucose and BP is

checked frequently so you can avoid other risk factors.

Welcome again!

In a message dated 7/26/2005 9:50:16 A.M. Pacific Daylight Time,

little_bird_cat@... writes:

Hi to all that are a part of this group.

I was diagnosed with IgAN and have also heard the term focal

glomerulonephritis used, are these two diseases one in the same?

I'm just beginning to learn about this disease, it's impact on daily life

and the course it takes throughout the years.

My recent labs show 300 proteinuria, large amounts of blood in urine, 65

serum creatinine, creatinine clearance 2.37.

I currently am on blood pressure meds, stanin and diuretic. My doctor told

me that my blood glucose numbers are leaning towards diabetes so perhaps

after my next appointment I'll have whatever medication is used to control

diabetes added to the daily mix.

Do these numbers sound like what others are experiencing?

Cat

[Guest guest]

Hi Pierre,

Thanks for your insight, it's nice to connect with others. ) My

Nephrologist has told me that although my labs show kidney problems a

biopsy isn't needed until my numbers get worse, so he's going on the

IgAN diagnosis based on what he sees from my blood/ 24-hr urine.

My bp was consistently up so I was put on medicine. My triglycerides

went from normal to over triple their number in 6 months so hence the

stanin was introduced. As for the diuretic, he notes that I have

idiopathic cyclic edema and the very low dosage of the diuretic is to

help with that. I don't know if this diuretic is what has pushed me

to the diabetic stage or not, I will have to inquire about this at my

next appointment. I do know in the past that my regular doctor has

suspected diabetes, tested and then all was fine. This last round of

tests by my Nephro showed the numbers to be above the normal range

for glucose but he said he wanted to wait until my next 6-month

checkup to see where the number was at before starting on any meds.

It seems as far as my history goes that blood in the urine has always

been present for years, then all of sudden within 3 years I got

hypertension, feet/ hand swelling, cholesterol problems and now quite

possibly diabetes.

I have to do some reading about diabetes because I don't know much

about it. It runs in my family on both sides (mom was just diagnosed

with it about a year ago and she's in her 50's)...I feel a bit

overwhelmed with all these medical concerns when I'm so young.

Thank you for confirming that I'm in the stable/ early stages of

kidney disease...that's a positive for sure!

Cat )

> Welcome to the group.

>

> In kidney disease, there are terms used to describe specific

diseases (like

> IgA nephropathy, for example), and terms to describe the physical

> characteristics of the renal injury. Focal is such a term, and

> glomerulonephritis is just a general term that encompasses all

kinds of

> kidney diseases where there is inflammation in the glomerul - IgA

> nephropathy is part of that group. For a better idea of what focal

means, go

> to the Glossary section of our website, www.igan.ca

>

> Right now, you have mild proteinuria and blood in the urine, but

you

> apparently have no loss of actual kidney function, at least not

judging from

> your creatinine and creatinine clearance numbers. I had numbers

like that

> more than 25 years before I had to start dialysis. So the goal for

you at

> this point will be to keep that proteinuria under control (it's

already

> pretty good, comparatively), and to prevent the disease from

progressing as

> much as possible (the BP med is for that). The blood will probably

go on its

> own, and it may come back from time to time. Statins are also

thought to

> help slow progression to some extent, as well as to control high

> cholesterol. Higher cholesterol tends to go hand in hand with

proteinuria.

>

> Were you borderline diabetic before, or only since you started on

the

> diuretic? I ask because diuretics can sometimes push people into

diabetic

> territory. Ask your doctor about this, just in case. I think it

would be

> imperative to control the diabetes if you have it, because that

will

> definitely not be helpful in preventing the progression of

nephropathy, not

> to mention all the other things that diabetes can do. Diabetes

often causes

> a kind of nephropathy on its own.

>

> Good luck.

>

> Pierre

>

>

>

>

> New Here

>

>

> > Hi to all that are a part of this group.

> >

> > I was diagnosed with IgAN and have also heard the term focal

> > glomerulonephritis used, are these two diseases one in the same?

> >

> > I'm just beginning to learn about this disease, it's impact on

daily life

> > and the course it takes throughout the years.

> >

> > My recent labs show 300 proteinuria, large amounts of blood in

urine, 65

> > serum creatinine, creatinine clearance 2.37.

> >

> > I currently am on blood pressure meds, stanin and diuretic. My

doctor

> > told me that my blood glucose numbers are leaning towards

diabetes so

> > perhaps after my next appointment I'll have whatever medication

is used to

> > control diabetes added to the daily mix.

> >

> > Do these numbers sound like what others are experiencing?

> >

> > Cat

> >

> >

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

> > Start your day with Yahoo! - make it your home page

> >

> >

[Guest guest]

Hi Cat,

If you are running 140/90 consistently, that is higher than is ideal for

someone with IgAN. It is very common for us to be on multiple BP meds. I

myself take 6 BP meds a day to stay under 130/80 which is where my Neph wants

me.

Your BP could be contributing to your headaches.

Your email also asked about fatigue. So many of us with IgAN suffer from

fatigue. I know that I absolutely have to get a minimum of 8 hours sleep a

night, and even with that, I am really wiped out on weekends and really have to

rest up in order to make it through the next week. Please try hard to listen

to your body and rest when you need to OK?

In a message dated 7/27/2005 6:30:49 A.M. Pacific Daylight Time,

little_bird_cat@... writes:

Hi ,

Thank you for the welcome to the group and for your help.

At the advice of my doctor I have a bp machine at home in which I

check my pressure here and there. It's usually around the 140/90

mark which is higher than my doctor would like (he's recommended

110/70) but from what I've seen and heard about Bp, my number

although above the norm is certainly low compared to what some people

out there are walking around with!

[Guest guest]

Hi ,

Thank you for the welcome to the group and for your help.

At the advice of my doctor I have a bp machine at home in which I

check my pressure here and there. It's usually around the 140/90

mark which is higher than my doctor would like (he's recommended

110/70) but from what I've seen and heard about Bp, my number

although above the norm is certainly low compared to what some people

out there are walking around with!

This whole glucose thing is new. Recent tests have showed an

increase in my blood glucose level but it's always been within the

normal range, it was just this month that the number jumped over the

normal range so if it's still high in 6 months then I'll be started

on medicine...by then I hope to have an understanding of diabetes as

I have no clue now.

I wanted to ask, I find myself tiring more easily these days...could

this be related to the kidney problems or would I have no symptoms

this early on? I also get headaches, pretty much everyday.

Cat )

>

> Hi Cat,

>

> A very warm welcome to the group. Pierre has already answered

your

> questions about glomerulonephritis and IgAN, but I just wanted to

welcome you too.

>

> Your labs look very good and obviously the goal is to keep you

stable where

> you are. Please do keep a very close eye on the glucose and/or A1C

levels

> because diabetes all by itself is a risk factor for kidney failure.

>

> The other thing that is very important is keeping your blood

pressure at a

> good level. Once you are diagnosed it is important to be

monitored regularly

> to keep abreast of any changes. With your levels, that may only

be once or

> perhaps twice a year, but I just want to make sure your glucose

and BP is

> checked frequently so you can avoid other risk factors.

>

> Welcome again!

>

>

>

> In a message dated 7/26/2005 9:50:16 A.M. Pacific Daylight Time,

> little_bird_cat@y... writes:

>

> Hi to all that are a part of this group.

>

> I was diagnosed with IgAN and have also heard the term focal

> glomerulonephritis used, are these two diseases one in the same?

>

> I'm just beginning to learn about this disease, it's impact on

daily life

> and the course it takes throughout the years.

>

> My recent labs show 300 proteinuria, large amounts of blood in

urine, 65

> serum creatinine, creatinine clearance 2.37.

>

> I currently am on blood pressure meds, stanin and diuretic. My

doctor told

> me that my blood glucose numbers are leaning towards diabetes so

perhaps

> after my next appointment I'll have whatever medication is used to

control

> diabetes added to the daily mix.

>

> Do these numbers sound like what others are experiencing?

>

> Cat

>

>

>

>

>

>

>

[Guest guest]

You're welcome, Cat. We're always happy to help new people in the group.

You're only new the first time you post. After that, you're an established

member of our community :-)

It sounds like your nephrologist is doing things according to current

clinical practice. Things change, and what is normal practice today might

not necessarily be so in the future. However, it's hard to argue with doing

things which seem to make sense today. One of these is the infamous biopsy.

Some people want it, beg for it, others don't want it unless they absolutely

have to. All we can say is that it's common practice not to order a biopsy

until things with the suspected IgAN (or any suspected glomerulonephritis,

for that matter) have gone south, namely, when there is consistently at

least a moderately high proteinuria (the blood in the urine, while more

obvious and dramatic, actually doesn't seem to mean much in the grand scheme

of things, and it's generally thought that it's better to have occasional

bouts of visible hematuria rather than have the kind which is always there

but only ever microscopic). Otherwise, it's thought that the risks of the

biopsy itself are greater than any benefit gained from it. It's been shown

time and time again that having an early biopsy makes no difference to the

treatment at that point, so why take the risk. The risks are small, but they

do exist. In my opinion, there will be plenty of time to do a biopsy later

on when it's more warranted.

Pierre

Re: New Here

> Hi Pierre,

>

> Thanks for your insight, it's nice to connect with others. ) My

> Nephrologist has told me that although my labs show kidney problems a

> biopsy isn't needed until my numbers get worse, so he's going on the

> IgAN diagnosis based on what he sees from my blood/ 24-hr urine.

>

> My bp was consistently up so I was put on medicine. My triglycerides

> went from normal to over triple their number in 6 months so hence the

> stanin was introduced. As for the diuretic, he notes that I have

> idiopathic cyclic edema and the very low dosage of the diuretic is to

> help with that. I don't know if this diuretic is what has pushed me

> to the diabetic stage or not, I will have to inquire about this at my

> next appointment. I do know in the past that my regular doctor has

> suspected diabetes, tested and then all was fine. This last round of

> tests by my Nephro showed the numbers to be above the normal range

> for glucose but he said he wanted to wait until my next 6-month

> checkup to see where the number was at before starting on any meds.

>

> It seems as far as my history goes that blood in the urine has always

> been present for years, then all of sudden within 3 years I got

> hypertension, feet/ hand swelling, cholesterol problems and now quite

> possibly diabetes.

>

> I have to do some reading about diabetes because I don't know much

> about it. It runs in my family on both sides (mom was just diagnosed

> with it about a year ago and she's in her 50's)...I feel a bit

> overwhelmed with all these medical concerns when I'm so young.

>

> Thank you for confirming that I'm in the stable/ early stages of

> kidney disease...that's a positive for sure!

>

> Cat )

>

>

[Guest guest]

Hi Pierre,

I got a little chuckle when I read in reply how treatment for this

disease is an ever changing thing...great, we're all guinneypigs! :op

Anyways, I agree with you that biopsies are a warranted when their

needed and not beforehand. My Nephrologist said that basically

anyone with a glomerul defiency is treated the same way and that

specifically knowing what type of disease branches from there doesn't

alter the treatment by extreme measures. Keeping stable is the key

as there's no magic cure for kidney disease. When the time comes for

a biopsy in my case I'll cross that bridge.

It sounds as if the things that are 'going wrong' in my case are

being monitored and controlled to where the norm across the board is.

I just hope that as with most IgAN cases, if infact that's truly what

I have, that is as slow going as it can be. I have had large amounts

of blood in my urine for years but that's always been recorded via a

dipstick urine test and I can't say that the color of my urine has

changed too often from yellow to a tea or red color, so I agree that

having blood in urine isn't a great factor in the overall picture.

The protein that has been found is something recent in the past 4

years as is the hypertension, cholesterol problems and diabetes...so

we'll see. These things all seem to be relevant to kidney disease so

maybe it means after years of just being there it's finally rearing

it's ugly head...time will only tell.

Cat )

> You're welcome, Cat. We're always happy to help new people in the

group.

> You're only new the first time you post. After that, you're an

established

> member of our community :-)

>

> It sounds like your nephrologist is doing things according to

current

> clinical practice. Things change, and what is normal practice today

might

> not necessarily be so in the future. However, it's hard to argue

with doing

> things which seem to make sense today. One of these is the infamous

biopsy.

> Some people want it, beg for it, others don't want it unless they

absolutely

> have to. All we can say is that it's common practice not to order a

biopsy

> until things with the suspected IgAN (or any suspected

glomerulonephritis,

> for that matter) have gone south, namely, when there is

consistently at

> least a moderately high proteinuria (the blood in the urine, while

more

> obvious and dramatic, actually doesn't seem to mean much in the

grand scheme

> of things, and it's generally thought that it's better to have

occasional

> bouts of visible hematuria rather than have the kind which is

always there

> but only ever microscopic). Otherwise, it's thought that the risks

of the

> biopsy itself are greater than any benefit gained from it. It's

been shown

> time and time again that having an early biopsy makes no difference

to the

> treatment at that point, so why take the risk. The risks are small,

but they

> do exist. In my opinion, there will be plenty of time to do a

biopsy later

> on when it's more warranted.

>

> Pierre

>

>

> Re: New Here

>

>

> > Hi Pierre,

> >

> > Thanks for your insight, it's nice to connect with others. )

My

> > Nephrologist has told me that although my labs show kidney

problems a

> > biopsy isn't needed until my numbers get worse, so he's going on

the

> > IgAN diagnosis based on what he sees from my blood/ 24-hr urine.

> >

> > My bp was consistently up so I was put on medicine. My

triglycerides

> > went from normal to over triple their number in 6 months so hence

the

> > stanin was introduced. As for the diuretic, he notes that I have

> > idiopathic cyclic edema and the very low dosage of the diuretic

is to

> > help with that. I don't know if this diuretic is what has pushed

me

> > to the diabetic stage or not, I will have to inquire about this

at my

> > next appointment. I do know in the past that my regular doctor

has

> > suspected diabetes, tested and then all was fine. This last

round of

> > tests by my Nephro showed the numbers to be above the normal range

> > for glucose but he said he wanted to wait until my next 6-month

> > checkup to see where the number was at before starting on any

meds.

> >

> > It seems as far as my history goes that blood in the urine has

always

> > been present for years, then all of sudden within 3 years I got

> > hypertension, feet/ hand swelling, cholesterol problems and now

quite

> > possibly diabetes.

> >

> > I have to do some reading about diabetes because I don't know much

> > about it. It runs in my family on both sides (mom was just

diagnosed

> > with it about a year ago and she's in her 50's)...I feel a bit

> > overwhelmed with all these medical concerns when I'm so young.

> >

> > Thank you for confirming that I'm in the stable/ early stages of

> > kidney disease...that's a positive for sure!

> >

> > Cat )

> >

> >

[Guest guest]

:

Back awhile ago I had to chart my BP for my doctor 3 times a day and

it was then that he saw I was consistently high...so I'm thinking

that perhaps I should start that again for a week and see if I don't

find some sort of pattern between that and my headaches. For the

most part I can deal with them but day after day, the same time of

day and so on it gets to be tedious. I never imagined someone being

on 6 medicines just to control one thing (and here I thought my daily

dose of 5 meds for all my conditions were alot).

It's just been in the past month or so that I've noticed I need a

kindergarten nap in the afternoon to make it through the rest of the

day but I have slowed down from before because the tiredness is

extreme (for me) and I have no choice but to rest.

I know about BP and all but just curious as to which number is more

determental to kidney function...one or both? And again, here's a

common thread I see among doctors...mine wants mine at 110/70 and

your doctor wants yours at 130/80. That's why this support group is

beneficial so that we can read about others experiences and

understand our own. )

Cat

>

> Hi Cat,

>

> If you are running 140/90 consistently, that is higher than is

ideal for

> someone with IgAN. It is very common for us to be on multiple BP

meds. I

> myself take 6 BP meds a day to stay under 130/80 which is where my

Neph wants me.

> Your BP could be contributing to your headaches.

>

> Your email also asked about fatigue. So many of us with IgAN

suffer from

> fatigue. I know that I absolutely have to get a minimum of 8

hours sleep a

> night, and even with that, I am really wiped out on weekends and

really have to

> rest up in order to make it through the next week. Please try

hard to listen

> to your body and rest when you need to OK?

>

>

>

> In a message dated 7/27/2005 6:30:49 A.M. Pacific Daylight Time,

> little_bird_cat@y... writes:

>

> Hi ,

>

> Thank you for the welcome to the group and for your help.

>

> At the advice of my doctor I have a bp machine at home in which I

> check my pressure here and there. It's usually around the 140/90

> mark which is higher than my doctor would like (he's recommended

> 110/70) but from what I've seen and heard about Bp, my number

> although above the norm is certainly low compared to what some

people

> out there are walking around with!

>

>

>

>

>

>

>

>

[Guest guest]

Hi everyone. I work for a school and we've been on summer break. I just

wanted to take a minute and give everyone a wonderful update on Allie Beth.

After being on the prednisone for 15 months, we completely stopped June 21st

after a very slow wean. Yeah! From her labs, her IGAN has been in

remission since February of 2005. Yeah!!!!! Her doctors from Cinci

Childrens's are now attempting to wean her off the blood pressure medicine

(10mg Enalapril). We're now taking 5 mg and August 21st we stop completely.

So far, we dip her urine for protein every other day and it's negative.

Also, the blood in her urine has gone from very large amounts down to only

trace at her last doctor's visit in June. She has a bladder infection right

now but is being treated with antibiotics. The one thing that has bothered

her is the weight doesn't seem to be coming off as we expected. You can

look at her and tell she's losing because she actually has cheek bones

again. She has also gotten so much taller. She looks great! No anemia and

she's got an awesome tan! I'm so thrilled for her!

Anyway, I'm trying to catch up on all the posts and my prayers are with

everyone! Congratulations also on the Foundation! That is awesome!

Everyone here, especially Pierre and all the other moderators are a truly a

blessing from above!

Thanks,

Tara, mom to Allie Beth

Re: New Here

Hi Cat,

If you are running 140/90 consistently, that is higher than is ideal for

someone with IgAN. It is very common for us to be on multiple BP meds. I

myself take 6 BP meds a day to stay under 130/80 which is where my Neph

wants me.

Your BP could be contributing to your headaches.

Your email also asked about fatigue. So many of us with IgAN suffer from

fatigue. I know that I absolutely have to get a minimum of 8 hours sleep a

night, and even with that, I am really wiped out on weekends and really

have to rest up in order to make it through the next week. Please try hard

to listen to your body and rest when you need to OK?

In a message dated 7/27/2005 6:30:49 A.M. Pacific Daylight Time,

little_bird_cat@... writes:

Hi ,

Thank you for the welcome to the group and for your help.

At the advice of my doctor I have a bp machine at home in which I check my

pressure here and there. It's usually around the 140/90 mark which is

higher than my doctor would like (he's recommended

110/70) but from what I've seen and heard about Bp, my number although

above the norm is certainly low compared to what some people out there are

walking around with!

[Guest guest]

Tara,

This is very good news about Allie.

Is this unique? I have not heard of IgA going into remission or getting

better. This is all new to me but the doctors told me that the most we could

hope for was for the IgA not getting worse since the kidney does not heal.

Is this something that was expected because of the steroid treatment?

Thanks,

Suzanne

>

>

[Guest guest]

Hi Tara,

Thank you so much for sharing your great news about Allie Beth's

remission. That is so encouraging to hear that some can overcome.

Best wishes for weaning her off the BP meds.

I am rejoicing with you in your good news.

Re: New Here

Hi Cat,

If you are running 140/90 consistently, that is higher than is ideal for

someone with IgAN. It is very common for us to be on multiple BP

meds. I

myself take 6 BP meds a day to stay under 130/80 which is where my Neph

wants me.

Your BP could be contributing to your headaches.

Your email also asked about fatigue. So many of us with IgAN suffer

from

fatigue. I know that I absolutely have to get a minimum of 8 hours

sleep a

night, and even with that, I am really wiped out on weekends and really

have to rest up in order to make it through the next week. Please try

hard

to listen to your body and rest when you need to OK?

In a message dated 7/27/2005 6:30:49 A.M. Pacific Daylight Time,

little_bird_cat@... writes:

Hi ,

Thank you for the welcome to the group and for your help.

At the advice of my doctor I have a bp machine at home in which I check

my

pressure here and there. It's usually around the 140/90 mark which is

higher than my doctor would like (he's recommended

110/70) but from what I've seen and heard about Bp, my number although

above the norm is certainly low compared to what some people out there

are

walking around with!

[Guest guest]

Hi Suzanne. You've asked some very good questions. I don't know if I can

respond to all of them, but I know there are a great number of others out

there who will know the answers. She has not just been on steroids. She

also took three months of oral cytoxan, which is a mild form of

chemotherapy. She also takes Enalapril ( blood pressure) not so much for

high blood pressure, but to help tighten the filters in her kidneys because

she was leaking so much protein. I have read several articles on the

internet that described types of remission. In the beginning it seemed like

the doctors would address one problem and another would pop up. I'm

thrilled to say that as of right now, she is doing awesome! Thanks, Tara,

mom to Allie

Re: New Here

Tara,

This is very good news about Allie.

Is this unique? I have not heard of IgA going into remission or getting

better. This is all new to me but the doctors told me that the most we could

hope for was for the IgA not getting worse since the kidney does not heal.

Is this something that was expected because of the steroid treatment?

Thanks,

Suzanne

>

>

[Guest guest]

--- Elisabeth pollypuddintang@...> wrote:

> My name is and I'm 34 I've been out of treatment for almost a year.

> I had 4 months of Cemo..and a mastectomy of my left breast lost my expander

due to cemo

> (the red devil) can't face surgery again right now after all this time I'm

still mad inside and

> scared. I was a stage1 invasive ductal almost a 2 but we got in time.

> I need to go for my second tumor markers but cant make the phone call

> I'm so scared this is the first time I have opened up and talked about it

> to other people please if any body can give me any advice I'll take

> it....

Hi ,

I was first diagnosed at age 33

I am 41 now, and although I had a reaccurance in 2004, I am cancer free today.

I have procrastinated making those appointments from time to time It is scary

to contemplate

the possibility that they may find something suspicious in labwork, mams,

ultrasound, PET scans,

ect. I also find that I worry anyway, while I procrastinate. Sometimes it saves

me some anxiety to

just get in, get out, and get it over with.

Hearing that everything looks good relieves the anxiety until next time. And I

found that even

when I received confirmation that the cancer was back, there was relief. I knew

my enemy, and knew

what I had to do. It was no longer the big unknown.

For years it was aggrevating to go in for my checkups, because my remaining

breast contained a lot

of 'dense tissue' that kept the doctors freaking out and sending me for more

tests. So I hated

going for my checkups, even though they always confirmed that the masses were

just dense tissue.

When cancer invaded my remaining breast, I knew it well before the doctors did.

A little bit of

irony there

I still feel some anxiety when I go for my tests, however practice has taught me

that confronting

my today is most helpful in battling stress and anxiety .... and yet, nourishing

myself by

allowing myself to bury my head for a few days or weeks is okay too, when that

is what I need to

do. Eventually, I know I will have to face yet another phlebotomist that can't

find a good vein

because they are all so scarred, injections of dye - wondering if I am going to

have a fatal

allergic reaction (nearly died from cytoxin), or another day searching the

doctor's face for that

pitying look that comes when they break the bad news.

It is all life... my life. And I am grateful to still have it. I have lost a

lot. I gave it up

willingly to have life today. Yes there is a price in anxiety, stress, loss ...

I remind myself

that my life was worth the sacrifices.

--Tess

" Don't die with your music still in you. "

Dr. Wayne Dyer, The Power of Intention

________________________________________________________________________________\

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