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Impression:

s/l divi-utal* pregnancy.

This is my first experience with a doctor I absolutely could not understand

anything. If I click my back pedal one time I swear I believe it goes back two

pages - he is going soooo fast and I think he is eating the microphone. I am so

frustrated. I hope you guys will be patient with me this evening - I am trying

my best to be.

Thanks As Always

Terry

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  • 8 months later...

Hi ,

When I was diagnosed with IgaN I asked my nephrologist at the time (I don't

have one right now) if I would be able to have kids later and her answer was

a straight out " NO " . Basically no ifs, ands, or buts about it. Although she

did tell me if I was going to have more kids (I have one) it would need to

be sooner than later (like Pierre mentioned). I have read information on

websites about pregnancy in IgaN patients and it is *very* disheartening.

Wants to make me cry... heck, I have cried about it. I'm 22, single and have

a 5 year old son and have always hoped to have more kids someday but it'll

most likely be later than sooner which means by that time it might be a real

nono.

I must also mention though that like everyone else has said, it has to be

your choice. There is a lot of controversy out there about this type of

thing. Myself if given the chance, I'd probably be stupid enough to get

pregnant again... and I do say stupid because of how my last pregnancy was.

I had IgaN already (though didn't know it...had the biopsy after), was very

young, and had high blood pressure (along with other things that occured

during the pregnancy) which made it a high risk and very difficult

pregnancy.

Just be sure to speak with your nephrologist before making any plans... and

I hope that what he/she has to say is what you want to hear! ;)

Ginger

>From: brendarisinger@...

>Reply-To: iga-nephropathyegroups

>To: iga-nephropathyegroups

>Subject: Pregnancy

>Date: Sun, 07 Jan 2001 03:33:37 -0000

>

>I want to know if women with IGaN are able to have successful

>pregnancies. Thinking I had all the time in the world to figure out

>my life, I haven't concentrated on relationships or having a family.

>I'm almost 34! So anybody who has any experience with this or has

>read any information would be appreciated. Thanks.

>

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Well, I've been afraid to ask my doctor. I am not giving up on the

idea. The problem is that I would be a single mother, and I would

have to get a donor. I am not in a relationship right now. I can't

help it. I feel I was meant to have children, and if my kidneys are

going to deteriorate over the next 25 years, then I need to make a

decision soon. My doctor has never even mentioned using birth

control or anything about the possibilities of getting pregnant. I'm

not sure if that's a good thing or not. I'm not saying I'm set on

the idea completely though. Besides what sperm bank is going to

accommodate me with a kidney problem. And that begs my other

question (and no I'm not ready to get a gun out or wallow in self-

pity)...who is going to want to set up a life with someone they know

has a kidney disease?!

> Hi ,

> When I was diagnosed with IgaN I asked my nephrologist at the time

(I don't

> have one right now) if I would be able to have kids later and her

answer was

> a straight out " NO " . Basically no ifs, ands, or buts about it.

Although she

> did tell me if I was going to have more kids (I have one) it would

need to

> be sooner than later (like Pierre mentioned). I have read

information on

> websites about pregnancy in IgaN patients and it is *very*

disheartening.

> Wants to make me cry... heck, I have cried about it. I'm 22, single

and have

> a 5 year old son and have always hoped to have more kids someday

but it'll

> most likely be later than sooner which means by that time it might

be a real

> nono.

> I must also mention though that like everyone else has said, it has

to be

> your choice. There is a lot of controversy out there about this

type of

> thing. Myself if given the chance, I'd probably be stupid enough to

get

> pregnant again... and I do say stupid because of how my last

pregnancy was.

> I had IgaN already (though didn't know it...had the biopsy after),

was very

> young, and had high blood pressure (along with other things that

occured

> during the pregnancy) which made it a high risk and very difficult

> pregnancy.

>

> Just be sure to speak with your nephrologist before making any

plans... and

> I hope that what he/she has to say is what you want to hear! ;)

>

> Ginger

>

> >From: brendarisinger@y...

> >Reply-To: iga-nephropathyegroups

> >To: iga-nephropathyegroups

> >Subject: Pregnancy

> >Date: Sun, 07 Jan 2001 03:33:37 -0000

> >

> >I want to know if women with IGaN are able to have successful

> >pregnancies. Thinking I had all the time in the world to figure

out

> >my life, I haven't concentrated on relationships or having a

family.

> >I'm almost 34! So anybody who has any experience with this or has

> >read any information would be appreciated. Thanks.

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

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Re: Pregnancy

> Well, I've been afraid to ask my doctor. I am not giving up on the

> ((snipped)) And that begs my other

> question (and no I'm not ready to get a gun out or wallow in self-

> pity)...who is going to want to set up a life with someone they know

> has a kidney disease?!

>

My wife did, 21 years ago and two teenagers later. Of course, there are

times now when I wish she hadn't, but that's another story :)

Pierre

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>Well, I've been afraid to ask my doctor. I am not giving up on the

>idea. >

I know its difficult but I think that you really need to talk with your

doctor about this... that way you can know what direction you need to go

in... either to try and stop thinking about getting pregnant... or?

>The problem is that I would be a single mother, and I would

>have to get a donor. >

If at any time you choose to do this, be sure to think through all the

consequences... make sure you have family or friends that would be there to

help in case problems did arise during a pregnancy... if something happens

to you, whos going to take care of the baby... etc

>My doctor has never even mentioned using birth

>control or anything about the possibilities of getting pregnant. I'm

>not sure if that's a good thing or not. >

I've noticed a lot of times that there are things the Drs *should* bring up,

and never do until you ask. My problem is I forget to asks questions till

after I leave... so I gotta write them down sometimes.

>I'm not saying I'm set on

>the idea completely though. Besides what sperm bank is going to

>accommodate me with a kidney problem. And that begs my other

>question (and no I'm not ready to get a gun out or wallow in self-

>pity)...who is going to want to set up a life with someone they know

>has a kidney disease?!

>

>

I know there are good people out there that could overlook such a thing as a

kidney disease. I haven't worried much about that in my relationships

because it might never become an issue (meaning you may never end up on

dialysis, but you never know). And the persons I've dated never seemed to

care too much about it, though that could be a problem too, hehe.

Ginger

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That's the question I ask myself for . By the way, we let him go with

his best friend hunting this weekend. He came home tired, but happy and

complaining of flank pain and soreness in his legs. Because of this

wonderful site, I was able to tell him that the flank pain is pretty normal

and don't worry about it.

>

>Reply-To: iga-nephropathyegroups

>To: <iga-nephropathyegroups>

>Subject: Re: Re: Pregnancy

>Date: Sun, 7 Jan 2001 17:57:30 -0500

>

>

> Re: Pregnancy

>

>

> > Well, I've been afraid to ask my doctor. I am not giving up on the

> > ((snipped)) And that begs my other

> > question (and no I'm not ready to get a gun out or wallow in self-

> > pity)...who is going to want to set up a life with someone they know

> > has a kidney disease?!

> >

>

>My wife did, 21 years ago and two teenagers later. Of course, there are

>times now when I wish she hadn't, but that's another story :)

>Pierre

>

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  • 2 months later...
Guest guest

To anyone worried about pregnancy and IGA, I would like to let new members know

that the two can go together without any

problems.

When I was pregnant with my first son who is now seven, the midwife kept picking

up traces of blood and protein ++ in my urine samples. I had no high blood

pressure or oedema and went on to have a healthy son. It was only when I was

again pregnant with my daughter four years ago that again the blood and protein

was picked up. I still had no high blood pressure or other

problems. It was only after my daughter was born that my GP decided to send me

for a kidney biopsy which revealed I had IGA. I am still on 6 monthly

appointments and felt quite laid back about my condition until my last

appointment in January. I was told my levels were slowly creeping up and if I

reached 'one' I might need to go on steroids. In my favour my blood

pressure is still extremely good. I certainly feel well and go circuit

training once a week.

Going back to pregnancy, I do feel sorry for those advised not to fall pregnant.

Luckily for me my pregnancies went very well. I am glad I did not know about

IGA at the time, as it is bad enough hoping that your children will be born

healthy, without having to worry about any effects IGA might cause. I have not

been advised to have any more children, although feel at

the age of 39 I'm getting too old to start that nappy lark again!

Hope this helps. Pierre, although I don't have much to say, I read the messages

every couple of days and think you are brilliant. I also feel we need to have a

laugh at times. I know as a family we are all very depressed by the foot and

mouth crisis. We live on the East Kent coast, a few minutes from the beach, but

also surrounded by farmland. The farmers are

desperate not to destroy the healthy sheep and their newborn lambs, and its

awful wondering if they are going to be next. Sorry to bring this up, but I'm

sure any of the other members from the U.K. will know what I am talking about.

Anyway, keep up the good work and the laughs!

Frances Daly

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Hi Frances

Nice to hear from someone else from the UK. We are based on the

Essex/Suffolk borders, and as my husband is farm manager of a 700 acre

estate, we know all too well the feelings of the foot and mouth crisis.

Fortunately enough for us in some respects, we are all arable, but our

neighbouring farmers have livestock, and they are really very worried. Up

until now Suffolk has escaped any outbreaks, but Essex has a number of

cases. The most recent was at Braintree which is literally only a few miles

from us.

Keeping people off the footpaths with dogs is proving to be a thankless task

for my husband. Short of keeping a 24 hour vigil it is hopeless. The

ignorance of those who flout the law is beyond me, but they will be the

first to moan if they get the £5000 fine imposed!!!!!

I think it is very kind of you to share your experiences of your children

and IGAN. Had I not known about my condition I definitely would have

started my family at age 38, but although my Neph said he saw no reason why

I should not start a family, as my IGAN was stable, he was more concerned

with my other medical issues, which could well have aggravated things. He

therefore could not guarantee that I would have a plain sailing pregnancy.

So with a heavy heart at the time I decided to heed his advice and not

proceed. Now 2 years down the road and with my fast approaching the big 40,

he was exactly right in his advice. Things aside of my IGAN have been

difficult to say the least, and I am now relieved I did not take the gamble,

sad but relieved. I keep telling myself I am lucky to be without the

sleepless nights, nappies etc, but the natural maternal thing within me

aches like mad.......made worse by my sister and sister in law both having

two children in quick succession over the last 3 years!!!! Your comments

will be a great comfort to those younger than I, and without the added

medical complications I have, that pregnancy is not so taboo if you are

prepared to take the chance.

Sorry to hear that your levels are creeping up by the way, but I am sure you

are being kept an eye on. I wonder where do you see your Neph? I was

wondering if you came to Addenbrookes in Cambridge, or are you lucky enough

to have one on your doorstep too?

I echo your comments about having something to smile about, which is why I

act the goat sometimes on here with other members.......completely defying

my so called mature of near 40 LOL.

Best wishes

Re: pregnancy

To anyone worried about pregnancy and IGA, I would like to let new members

know that the two can go together without any

problems.

When I was pregnant with my first son who is now seven, the midwife kept

picking up traces of blood and protein ++ in my urine samples. I had no

high blood pressure or oedema and went on to have a healthy son. It was

only when I was again pregnant with my daughter four years ago that again

the blood and protein was picked up. I still had no high blood pressure or

other

problems. It was only after my daughter was born that my GP decided to send

me for a kidney biopsy which revealed I had IGA. I am still on 6 monthly

appointments and felt quite laid back about my condition until my last

appointment in January. I was told my levels were slowly creeping up and if

I reached 'one' I might need to go on steroids. In my favour my blood

pressure is still extremely good. I certainly feel well and go circuit

training once a week.

Going back to pregnancy, I do feel sorry for those advised not to fall

pregnant. Luckily for me my pregnancies went very well. I am glad I did

not know about IGA at the time, as it is bad enough hoping that your

children will be born healthy, without having to worry about any effects IGA

might cause. I have not been advised to have any more children, although

feel at

the age of 39 I'm getting too old to start that nappy lark again!

Hope this helps. Pierre, although I don't have much to say, I read the

messages every couple of days and think you are brilliant. I also feel we

need to have a laugh at times. I know as a family we are all very depressed

by the foot and mouth crisis. We live on the East Kent coast, a few minutes

from the beach, but also surrounded by farmland. The farmers are

desperate not to destroy the healthy sheep and their newborn lambs, and its

awful wondering if they are going to be next. Sorry to bring this up, but

I'm sure any of the other members from the U.K. will know what I am talking

about. Anyway, keep up the good work and the laughs!

Frances Daly

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Guest guest

Thank you for posting that Frances, and also for the nice compliment. One of

these days, I'm going to have to gather up and consolidate the various

messages on pregnancy we've had, and post them as a file for easy access in

the future. It's nice to hear a positive story from someone with IgAN who

has actually had children.

On the subject of the U.K.'s struggle with foot and mouth disease, here in

Canada, we have the luxury of just looking on, so far. But not a day goes by

that it isn't on the news, so we are very aware of it, and personally, I

feel for the farmers who have lost their herds. It's a terrible tragedy. Our

various government agencies are watching very closely, because it could very

easily cross the Atlantic. They have even banned the importation of used

farm equipment from Europe, and everyone arriving from any British or

European point of departure is required to walk through disinfectant as they

deplane. They even have special dogs at the international airports sniffing

people and their luggage in case any meat products might be carried.

Pierre

Re: pregnancy

> To anyone worried about pregnancy and IGA, I would like to let new members

know that the two can go together without any

> problems.

>

> When I was pregnant with my first son who is now seven, the midwife kept

picking up traces of blood and protein ++ in my urine samples. I had no

high blood pressure or oedema and went on to have a healthy son. It was

only when I was again pregnant with my daughter four years ago that again

the blood and protein was picked up. I still had no high blood pressure or

other

> problems. It was only after my daughter was born that my GP decided to

send me for a kidney biopsy which revealed I had IGA. I am still on 6

monthly appointments and felt quite laid back about my condition until my

last appointment in January. I was told my levels were slowly creeping up

and if I reached 'one' I might need to go on steroids. In my favour my

blood

> pressure is still extremely good. I certainly feel well and go circuit

training once a week.

>

> Going back to pregnancy, I do feel sorry for those advised not to fall

pregnant. Luckily for me my pregnancies went very well. I am glad I did

not know about IGA at the time, as it is bad enough hoping that your

children will be born healthy, without having to worry about any effects IGA

might cause. I have not been advised to have any more children, although

feel at

> the age of 39 I'm getting too old to start that nappy lark again!

>

> Hope this helps. Pierre, although I don't have much to say, I read the

messages every couple of days and think you are brilliant. I also feel we

need to have a laugh at times. I know as a family we are all very depressed

by the foot and mouth crisis. We live on the East Kent coast, a few minutes

from the beach, but also surrounded by farmland. The farmers are

> desperate not to destroy the healthy sheep and their newborn lambs, and

its awful wondering if they are going to be next. Sorry to bring this up,

but I'm sure any of the other members from the U.K. will know what I am

talking about. Anyway, keep up the good work and the laughs!

>

> Frances Daly

>

>

>

>

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  • 6 months later...

> Hi . I have heard from a number of pregnant women with IgAN

over the

> years - and they are just about all success stories. You are seeing

a high

> risk pregnancy doctor, but this is not unlike many other women with

many

> different medical conditions. The " high risk " part really just

means that

> someone with more expertise will be watching over you more closely -

so that

> if something like hypertension develops, they can be right on top

of it.

> There are other mothers on the group, and hopefully, someone else

who has

> been in the same situation will answer your message. The best of

luck to

> you, and don't worry too much about it.

> Pierre

> Hi Pierre-- Thank you so much for the words of comfort. I am so

glad to be a part of this support group. God bless you.

> Re: Herbal medicines

>

>

> Hi Pierre

> >

> > My name is and I have had IGA for past 2 years and

wondered

> > through your experience if you came across anyone who experienced

a

> > healthy pregnancy even with IGA nephropathy? I am really afraid

and

> > will be seeing a high risk doctor, but am wondering if you could

give

> > me any good stories? Please write back.

> >

> >

> >

> >

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You're welcome . I've always been a firm believer in expecting the

best outcome. Certainly, sometimes things don't work out as we would like,

but, as I said, the majority of IgAN pregnancies are successful if the

disease is relatively stable, and you are being followed as a high risk

pregnancy, which means you will probably get more attention than you wish,

and that the right things seem to be happening. So, let's hope for the best.

Pierre

Re: Pregnancy

> > Hi Pierre-- Thank you so much for the words of comfort. I am so

> glad to be a part of this support group. God bless you.

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My new

neph (who is very nice) says that pregnancy is ok as there are different drugs

that are foetus friendly, and that very careful monitoring is in order to

ensure the safety of mother and baby,

-----Original

Message-----

From: Pierre L

Sent: 04 October 2001 13:12

To: iga-nephropathy

Subject: Re: Re:

Pregnancy

Hi . I have heard from a number of pregnant women with

IgAN over the

years - and they are just about all success stories. You are seeing a high

risk pregnancy doctor, but this is not unlike many other women with many

different medical conditions. The " high risk " part really just

means that

someone with more expertise will be watching over you more closely - so

that

if something like hypertension develops, they can be right on top of it.

There are other mothers on the group, and hopefully, someone else who has

been in the same situation will answer your message. The best of luck to

you, and don't worry too much about it.

Pierre

Re: Herbal medicines

Hi Pierre

>

> My name is and I have had IGA for past 2 years and wondered

> through your experience if you came across anyone who experienced a

> healthy pregnancy even with IGA nephropathy? I am really afraid

and

> will be seeing a high risk doctor, but am wondering if you could give

> me any good stories? Please write back.

>

>

>

>

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Hi -- I am impressed with your experience. Are you going to chance it and go for another baby? Thank you very much for your story. It is most unusual. How are your kidneys doing now? I am thrilled you had a healthy baby!

Digest Number 372>Date: 5 Oct 2001 13:25:42 -0000>>

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--,

By the way, I was born with a similar defect on the right side, i had

my right ovary was completely detached and floating out there in

space with another little uteris that is completely useless. It's

called and anlagen or something like that. My doctors took pictures

of it and sent it to other doctors. ifeel so special!

- In iga-nephropathy@y..., " Mohr " <momom11200@h...> wrote:

> Hi ,

> My name is also . I am 29 years old & was diagnosed

with IGA in

> July of this year. The Neph says that I have had it for approx. 5

years. I

> delivered my first child (a son) in Nov. of 2000. Didn't know

until I was

> 13 weeks pregnant that I was born with only my left kidney. My

protien was

> extremely high for not being that far along, they sent me to the

Neph for

> test, he did a sonogram of the kidneys. That is when they found I

was born

> without my right kidney. Anyway, During my pregnancy I was seen A

LOT!! I

> saw my Ob as well as my Neph every month also had to do 24 hr urine

every

> month. My blood pressure continued to climb so they put me on

Alodomet(not

> sure of sp.) which is safe during pregnacny. I was seen more often

the

> further I got & had to go to the hospital on a couple of occassions

for

> tests. They watched me very closley. In my 32nd week I was put on

complete

> bed rest except for a few exceptions. I was seen 2 x's a week for

the

> remainder. My Ob decided to go ahead at 36 weeks, had to do a c-

section.

> Found when doing the c-section that the reason we had to do the c-

section

> was because I was also born without the right portion of my uterus

as well

> as my right ovary. Anyway, my son is almost 1 year old, weighs

about 31lbs.

> & is wonderful. The Neph says that I can still sustain another

pregnancy

> just would have to be watched even more closely this time. sorry

to have

> made this so long but wanted to explain to you. Hope I helped.

> Jen

>

>

> >From: iga-nephropathy@y...

> >Reply-To: iga-nephropathy@y...

> >To: iga-nephropathy@y...

> >Subject: Digest Number 372

> >Date: 5 Oct 2001 13:25:42 -0000

> >

> >

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Hi 2 here again. My protein actually went up rather than down after

I delivered my son. However, I was put on an ACE Inhibitor when my son was

9 months old ( beginning of August),I was nursing & had to give it up but my

next visit which was the beginning of Sept. my protien had gone from over

4000 in a 24 hr to barley over 2000 over the same amount of time. I am also

taking fish oil gelcaps. My Neph says that I should be able to do another

pregnancy as long as my nubers are doing ok. My Mom thought that if I were

to get pregnant right now that it would either kill me or at the very least

put me on dialysis but my Neph disagreed. He said it would definatly put

more strain then the last one & more damage to this kidney but that he

thinks I could sustain it. My blood pressure was fine before the pregnancy

but went up during the pregnancy. It stays roughly around 128/76-80

sometimes a little higher on the bottom #. But over all he seems pretty

optimistic. Hope this helps to encourage you.

Jen

>From: iga-nephropathy

>Reply-To: iga-nephropathy

>To: iga-nephropathy

>Subject: Digest Number 379

>Date: 11 Oct 2001 20:53:29 -0000

>

>

>

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