RE: NEW TO GROUP

[Guest guest]

Hi ,

I'm sorry you are having heart problems on top of the IgAN. It is no wonder

you had such a severe headache when your BP was so high.

I have not had heart problems like you are asking about. Perhaps someone

else in the group may be able to comment on that.

Could I please very respectfully ask that you consider typing without the

caps lock on? It makes the emails much easier to read when they are not all

in caps, and I just want to make sure I don't miss anything in your emails.

I would really appreciate it! Thanks so much.

[Guest guest]

Norvasc generally doesn't increase blood pressure, but I know from

experience that it can be totally ineffective on some people, and, if you

happen to have a BP spike, it can be pretty high. The swelling in the lower

limbs is a well-known possible side effect. It's less likely to happen with

Norvasc than with some other calcium channel blockers, but it does happen.

Pierre

Re: NEW TO GROUP

> Hi ,

>

> That is great news that your protein level is down and your creatinine is

> holding steady! YEAH!!

>

> I have never heard of Norvasc increasing the blood pressure like that, but

> then again that is Pierre's area of expertise! That would have scared me

to

> death I think. I know those high BP headaches are supposed to be

incredibly

> painful. I am glad they kept you and observed you until your BP came back

> down.

>

> Take care of yourself!

>

>

>

>

>

[Guest guest]

Welcome ,

Glad that you found our little or shall I say growing family here. I'm 48

years old and was diagnosed with IgAN at the age of 24. I am still not on

dialysis. My S Creatinine is around 3.0 and I have around 22-24% function.

Several years ago, when I was at my Neph for a regular appointment, he was

listening to my heart and he kept listening and concentrating and listening

again. He heard a slight heart mummer.

He recommended that I see a cardiologist. After going through the echo,

ultra sound, tread mill, etc. it was determined that I have mitro valve

prolapse and a slightly enlarged heart. To date, the heart hasn't given me

any big problems, once in a while I have a little pain and some fluttering

now and then. The fluttering may be due to hormones at this stage of my

life. I also have shortness of breath (the guys at work attribute that to

my constant talking) and also have a very busy active life and work full

time.

If I may, could I ask you a few questions? Will the valve replacement be

your only option? Also, will they take care of the valve before considering

dialysis or transplant for you? You are very fortunate that you have

several brothers that are perfect matches for you and I hope that it all

works out for all of you. Keep us posted on your heart situation. Again,

welcome and please come here at any time for support.

Connie

Moderator, USA

NEW TO GROUP

HI EVERYONE,

I STARTED AT AGE 20 WITH BLOOD IN MY URINE MICROSCOPICALLY. I SAW A

UROLOGIST WHO BASICALLY TOLD ME SOME WOMEN JUST HAVE THAT. AT AGE 31,

iN AUGUST 2001, I STARTED WITH A SEVERE HEADACHE THAT WOULDN'T GO

AWAY. WHEN MY LABS WERE CHECKED. MY SERUM CREATININE WAS 4.0 TO 5.0

DEPENDING WHEN IT WAS TAKEN. MY BP WAS 240/130 ON ADMISSION TO ER. MY

RENAL BIOPSY SHOWED IGAN. I SEE A NEPHROLOGIST NOW AT UNIVERSITY OF

MD MEDICAL CTR. mY CREATINE STILL RUNS 4.0, 4.5 ETC WHEN TESTED EVERY

6 WEEKS. I TAKE ZESTRIL 2.5MG A DAY,LASIX 20MG A DAY, ARENESP (WHICH

IS LIKE PROCRIT) FOR MY ANEMIA TO KEEP HCT 32-34. mY GLOMERULAR

FILTRATION RATE WAS CALCULATED LAST YEAR AT 16. i AM ON THE

TRANSPLANT LIST FOR LIVING DONOR WORK UP. i DO HAVE 2 BROTHERS OUT OF

3 THAT ARE A 6 OUT OF 6 PERFECT MATCH. DURING THE WORK UP I FAILED

THE DOBUTAMINE STRESS ECHO AND HAD TO HAVE A CARDIAC CATH WHICH WAS

ALL CLEAR,I DID LEARN I HAD AORTIC REGURGITATION. i AM NOW 32 YRS OLD.

I RECENTLY HAD A REPEAT ECHO WHICH SHOWED THE SAME AORTIC REGURG

MODERATE SO I SAW A CARDIOLOGIST WHO TOLD ME I HAVE A CALCIUM DEPOSIT

ON THE VALVE SO THE VALVE WON'T SHUT CORRECTLY. THEY ARE GOING TO

FOLLOW MY ECHOCARDIOGRAMS EVERY 6 MONTHS AND WHEN OR IF MY HEART

CHAMBERS CHANGE SIZE I WOULD NEED A VALVE REPLACEMENT. I DO GET SHORT

OF BREATH WITH EXERTION. I DO WORK FULL TIME. I AM TIRED SOMETIMES

MORE THAN OTHERS BUT NOW I FEEL PRETTY GOOD. I AM WAITING TO FEEL

WORSE BEFORE CONSIDERING LIVING DONOR FOR RENAL TRANSPLANT OR

DIALYSIS. I DON'T KNOW WHAT FEEELING WORSE WILL ENTAIL-HOW HAVE OTHER

PEOPLE DECIDED IT WAS TIME? HAS ANYONE ELSE HAD HEART VALVE PROBLEM?

THANKS FOR LISTENING,

CHRISTINE

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

[Guest guest]

Ann,

Welcome to our list!

Some children without the obvious signs of bowel problems have done

SCD and gotten dramatic changes in behavior and other ASD symptoms.

My children did not have the obvious GI symptoms prior to SCD.

In Horvath's paper about GI issues and ASD,it is stated that many ASD

children have hidden GI problems.

Mimi

> Hi,

> I am new to this group.

I just recently found Elaine's book and would

> like to try the diet on my daughter. She has PDD-NOS and doesn't

> appear to have any outward signs of bowel problems, although once in

> awhile her stools are not normal, depending on what she eats. She

> does not seem able to digest oatmeal well. I was wondering if anyone

> tried the diet for their child for behavior/learning delays only, and

> found improvement in behavior and/or learning delays.

> Thanks,

> Ann

[Guest guest]

Mimi,

My daughter probably does have some hidden problems. How did your

children react to the diet? Did any digestive problems arise?

Ann

> > Hi,

> > I am new to this group.

>

>

> I just recently found Elaine's book and would

> > like to try the diet on my daughter. She has PDD-NOS and doesn't

> > appear to have any outward signs of bowel problems, although once

in

> > awhile her stools are not normal, depending on what she eats.

She

> > does not seem able to digest oatmeal well. I was wondering if

anyone

> > tried the diet for their child for behavior/learning delays only,

and

> > found improvement in behavior and/or learning delays.

> > Thanks,

> > Ann

[Guest guest]

Ann,

My children do very well with the diet when they are compliant. We did

GFCFSF (no corn,no buckwheat ,almost no sugar) for 9 years prior to

SCD.. WE also did a modified Sara's diet for a while.My son was very

underweight before he started SCD despite the fact that he ate tons of

food. My daughter was of average weight. My son is still thin but not

as thin as he was before and he does not need to eat immense amounts

of food.

My daughter makes faster gains with SCD than my son does when she is

compliant. She is 4 years younger,less damaged and from the " lucky for

autism " gender. However she refuses to comply and is a master at

sneaking illegals when she is outside the home. My son's progress is

so much better than that of his sister. He is now the one who is more

together,has less stims and more concentration since he is totally

compliant. My son is my SCD success story since it is so easy to do

SCD for him. I have also learned something from my failure to

implement SCD for my daughter. I understand how difficult it is to

implement SCD for some children

Yesterday,the speech therapist told me that my son has done amazing

progress since he started therapy with her(about a year and a half

ago). If anyone wants to contact her,email me privately and I will

give the contact info.

> Did any digestive problems arise?

Yes,my son had a horrible initial bad reaction. He had awful GI issues

for about 12 days. I wanted to take him off the diet.After the initial

bad reaction,he did great on the SCdiet .

My daughter did not have a bad initial reaction. A few months ago,she

had a very bad case of GI distress. I felt betrayed by SCD since this

never happened before SCD. Also this happened during a time when she

had no opportunity to sneak an illegal outside the home.But I had too

much faith in SCD to give up and declare that this was not the diet

for her. I decided to confront her and luckily she confessed that she

got into a big stash of sugared junk food that was left in our house

by someone. Since she ate a huge amount of sugar all at once,her GI

system could not handle it. This experience made me realize that you

need to believe in SCD in order to be able to implement it.

Good luck with the diet.

Mimi

> > > Hi,

> > > I am new to this group.

> >

> >

> > I just recently found Elaine's book and would

> > > like to try the diet on my daughter. She has PDD-NOS and doesn't

> > > appear to have any outward signs of bowel problems, although once

> in

> > > awhile her stools are not normal, depending on what she eats.

> She

> > > does not seem able to digest oatmeal well. I was wondering if

> anyone

> > > tried the diet for their child for behavior/learning delays only,

> and

> > > found improvement in behavior and/or learning delays.

> > > Thanks,

> > > Ann