New to Group

[Guest guest]

Hi Alanna,

Welcome to our group! I am so glad you found us. is very blessed to

have a wife as supportive as you obviously are! Having a strong marriage as

a foundation goes far to keeping stress levels low. We have other spouses

who are members of the group too, so you are not alone at all.

I am another one who has had IgAN for over 20 years and I, like Connie, am

also not on dialysis. Do you know what 's serum creatinine is? You

mentioned it went up .3, but not what it was.

I know you will find much information and support here.

Welcome again,

[Guest guest]

Hi Alanna.

Welcome to the group.

You know, it's quite a coincidence that my IgAN didn't become enough of a

problem to have a biopsy until 16 years after the initial discovery of blood

in the urine. I was in the Navy too, but had resigned my commission for a

public service job by that time - although still very much in a naval

environment until 1990 (big mistake quitting the navy in retrospect!).

The classic pattern of IgAN is of increasing levels of serum creatinine over

many years, and proteinuria increasing from mild to moderate at the same

time. It sounds like your husband may be like that.

Glad you found us and came aboard. We have many members who aren't the

actual IgAN patient, so you should fit right in. Your husband is lucky to

have someone who cares that much about it.

If your husband were to progress to kidney failure, being retired from the

Navy with a pension will make things so incredibly easier in so many ways -

as opposed to people who don't have a military pension. I hope that never

happens though.

Pierre

List owner

new to group

> My husband has been spilling protein and blood into his urine for 16

> years but his 24 hour urine samples were mostly normal he was told

> back then that he probably had IgA. Just recently, he gave a 24 hour

> urine and was spilling 1808mg of protein. His creatinine had

> increased as well. His blood creatinine levels had increased .3

> points this past year. His doctor wants to go ahead with a biospy now

> to check kidney function and confirm the suspected diagnosis. This

> year he was sick a couple of times with upper resp infection and both

> times he would experience flank pain and tea colored urine. I wonder

> if this is what caused the flare up this year or has he just been

> lucky so far. The neph doc started him on lisinopril (he doesn't yet

> have high blood pressure) as a protective measure. The doc also

> started him on a decreased sodium and protein diet. That has

> definetly been a challenge! I think every thing we ate before was

> packaged. Even though I'm not the person with IgA I hope you guys

> will accept me into this group because he is my life, best friend and

> husband and I want to know all I can about this and I need support

> because I have been worrying so much over this. I know he's worrying

> a lot too. I'm Alanna, my husbands name is .. We have 5

> children...ages 15, 11, 7, 3 and 1. I'm a nurse and work labor and

> delivery (not much help with kidneys:) ) and is in the

> Navy. He will retire after 20 years this August. I'm so glad there

> is this support group and we don't have to face this alone.

>

>

>

>

> 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

>

>

[Guest guest]

Welcome Alanna and ,

Please by all means write to us at any time. sounds like an old

timer, like many of us on this site. I was clinically diagnosed over 20+

years ago and finally just had a biopsy in 2002 to confirm the suspected

diagnosis of IgAN and am very glad to say that I'm not yet on dialysis. Yea!

If you're like many of us, you will find this group your " fix " for the day.

We have so many members in this group that will astonish you with their

knowledge and expertise. You will get all types of support here, as an

example, I tend to give emotional support because I wouldn't want to

technically miss-quote something. Ask questions till your heart is content,

someone will respond! Again, welcome to you and your family. Connie, USA

new to group

My husband has been spilling protein and blood into his urine for 16

years but his 24 hour urine samples were mostly normal he was told

back then that he probably had IgA. Just recently, he gave a 24 hour

urine and was spilling 1808mg of protein. His creatinine had

increased as well. His blood creatinine levels had increased .3

points this past year. His doctor wants to go ahead with a biospy now

to check kidney function and confirm the suspected diagnosis. This

year he was sick a couple of times with upper resp infection and both

times he would experience flank pain and tea colored urine. I wonder

if this is what caused the flare up this year or has he just been

lucky so far. The neph doc started him on lisinopril (he doesn't yet

have high blood pressure) as a protective measure. The doc also

started him on a decreased sodium and protein diet. That has

definetly been a challenge! I think every thing we ate before was

packaged. Even though I'm not the person with IgA I hope you guys

will accept me into this group because he is my life, best friend and

husband and I want to know all I can about this and I need support

because I have been worrying so much over this. I know he's worrying

a lot too. I'm Alanna, my husbands name is .. We have 5

children...ages 15, 11, 7, 3 and 1. I'm a nurse and work labor and

delivery (not much help with kidneys:) ) and is in the

Navy. He will retire after 20 years this August. I'm so glad there

is this support group and we don't have to face this alone.

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

[Guest guest]

Hi Alanna and , welcome to the group, sorry you had to have

or connected to Iga to get here! I've not been here too long,

Diagnosed in August 2002, but find it a great resource and full

freindly, knowledgeable people who are happy to tap away in response

to the most mundane of questions...

Wherabouts in the world are you from?

Take care,

Cambridge, UK

> My husband has been spilling protein and blood into his urine for

16

> years but his 24 hour urine samples were mostly normal he was told

> back then that he probably had IgA. Just recently, he gave a 24

hour

> urine and was spilling 1808mg of protein. His creatinine had

> increased as well. His blood creatinine levels had increased .3

> points this past year. His doctor wants to go ahead with a biospy

now

> to check kidney function and confirm the suspected diagnosis.

This

> year he was sick a couple of times with upper resp infection and

both

> times he would experience flank pain and tea colored urine. I

wonder

> if this is what caused the flare up this year or has he just been

> lucky so far. The neph doc started him on lisinopril (he doesn't

yet

> have high blood pressure) as a protective measure. The doc also

> started him on a decreased sodium and protein diet. That has

> definetly been a challenge! I think every thing we ate before was

> packaged. Even though I'm not the person with IgA I hope you guys

> will accept me into this group because he is my life, best friend

and

> husband and I want to know all I can about this and I need support

> because I have been worrying so much over this. I know he's

worrying

> a lot too. I'm Alanna, my husbands name is .. We have 5

> children...ages 15, 11, 7, 3 and 1. I'm a nurse and work labor and

> delivery (not much help with kidneys:) ) and is in the

> Navy. He will retire after 20 years this August. I'm so glad

there

> is this support group and we don't have to face this alone.

[Guest guest]

Dear and Alanna

A warm welcome to the group Alanna although I am sorry that may

have IGAN to be here. Of course a biopsy is the only true way to get a

fully definitive diagnosis for this condition, I don't know how you feel

about this, but although a major organ is involved, the procedure

nowadays is pretty simple, as far as surgeons are concerned, although of

course it will come with all the inherent risks, and with you being a

nurse you will understand this. As far as my experience of the biopsy

was concerned, I was very sore for a couple of days, but many people

here have found no problems at all.

Tea coloured urine and URI seem to go hand in hand for many of us, and

is very common, as is the flank pain, a real 'get on my soapbox' subject

as far as I am concerned, in the archives you will find heaps of

information on all the symptoms and in the varying degrees we all suffer

with it, another favourite among us is the fatigue..don't even get me

started on that one!

Of course we welcome you into the group, spouses are equally in need of

support, and we welcome you with open arms. Any questions you may have

please don't hesitate to ask, and someone will try to help you. I am

not the most technical advisor here, but I am willing to try.

Best wishes

UK Moderator

Re: new to group

Hi Alanna and , welcome to the group, sorry you had to have

or connected to Iga to get here! I've not been here too long,

Diagnosed in August 2002, but find it a great resource and full

freindly, knowledgeable people who are happy to tap away in response

to the most mundane of questions...

Wherabouts in the world are you from?

Take care,

Cambridge, UK

> My husband has been spilling protein and blood into his urine for

16

> years but his 24 hour urine samples were mostly normal he was told

> back then that he probably had IgA. Just recently, he gave a 24

hour

> urine and was spilling 1808mg of protein. His creatinine had

> increased as well. His blood creatinine levels had increased .3

> points this past year. His doctor wants to go ahead with a biospy

now

> to check kidney function and confirm the suspected diagnosis.

This

> year he was sick a couple of times with upper resp infection and

both

> times he would experience flank pain and tea colored urine. I

wonder

> if this is what caused the flare up this year or has he just been

> lucky so far. The neph doc started him on lisinopril (he doesn't

yet

> have high blood pressure) as a protective measure. The doc also

> started him on a decreased sodium and protein diet. That has

> definetly been a challenge! I think every thing we ate before was

> packaged. Even though I'm not the person with IgA I hope you guys

> will accept me into this group because he is my life, best friend

and

> husband and I want to know all I can about this and I need support

> because I have been worrying so much over this. I know he's

worrying

> a lot too. I'm Alanna, my husbands name is .. We have 5

> children...ages 15, 11, 7, 3 and 1. I'm a nurse and work labor and

> delivery (not much help with kidneys:) ) and is in the

> Navy. He will retire after 20 years this August. I'm so glad

there

> is this support group and we don't have to face this alone.

[Guest guest]

Hi - I'm a long-time meber of several autism related Yahoo groups and

am on the verge of starting the SCD with my 8 yr old ASD daughter.

I've bought the yogurt maker and the book, now all I need is a burst

of energy. A few questions:

1) Does the goat milk have to be unpasteurized?

2) My daughter was on gfcf twice for months at a time - no results.

She even had a high reading on her peptides test for gliadomorphin

(sp?). Are the a lot of kids out there that are succeeding on SCD

while not on GFCF?

3) She is also a late-onset kid; perfectly normal until age 2 1/2,

then crashing into autism. We've tried everything over the last 6

years with very little success. Should I bother trying this as well?

Anyothers like her?

4) Are peas really legal? She eats a ton of them because they're sweet

and starchy...

Thanks,

[Guest guest]

>

> 1) Does the goat milk have to be unpasteurized?

No. But you don't probably want to do yogurt right off... then

again, if she is not GFCF NOW, you probably could do yogurt at the

beginning, AND you could probably even do COW based yogurt.

> 4) Are peas really legal? She eats a ton of them because they're

sweet

> and starchy...

>

Peas (fresh or frozen) are legal in the SCD, Canned are illegal.

BUT you want to wait on peas until later in the diet (several

weeks?) as they are harder to digest because yes, they are so

starchy...

-- Sue, mom to Adam and

SCD 3 momths