Contemplating Pregnancy with IGAN

[Guest guest]

My husband and I are at a point in our lives/marriage where we are considering a

family but there is hesitation due to the risks involved. I am 30 years old, was

diagnosed with IGA Nephropothy 4 years ago brought on by Henoch Schoenlein

purpura and the current status of my disease is mild (HAAS class II) and my last

24 hour collection indicated that my creatinine was 1.3 (an increase from my

last 24 hour collection), protein of 3.35 (about the same as last collection)

and blood creatinine of 1.1. The only " flare ups " that I experience is when I

get a cold, I see blood in my urine. Other than that, I am generally not

physically bothered by my disease.

I have seen the head of Nephrology at a top hospital in Boston and his feeling

was that my disease should remain mild for the next several years and that I

" should go for it " with regard to pregnancy and that pregnancy is likely not to

cause a permanent decline in my kidney function.

I have also seen a high-risk OB in NYC that specializes in Preeclamsia and

patients with other medical conditions such as mine. He went over the risks

(multiple miscariages, onset of early preeclamsia, low birth weight) but said

that I should be fine in terms of my Kidney status post-partum. Because my

kidney function has declined over the past several years, he feels that time is

definitely a factor and that I should consider getting pregnant soon.

So, these 2 doctors were definitely more encouraging than my docs here in

Michigan have been and both seem to feel that pregnancy should not effect my

kidney function post-partum. However, there is still that possibility that it

will and given that my disease is currently mild, I would like to keep it that

way for many more years to come. Also, I think about the emotional toll of

having multiple miscarriages, or, worse having to terminate the pregnancy

because of an early onset of preeclampsia. There is also the risk of pre-term

labor and the struggles involved with a premature baby. Are we crazy to even

consider getting pregnant? But on the other hand, there is a possibility,

perhaps a small one, of none of this happening or that I will experience a

somewhat " normal " pregnancy.

To get to the point, I am hoping to find other women who have gone through a

similar struggles and contemplation when trying to decide if getting pregnant is

something they want to do. I just don't know how I'll ever be able to come to a

decision, so I am looking to hear how others weighed the pros and cons and came

to a conclusion.

Thanks,

Holly

Holly Elmes

Passport In Store Manager

Macy's West

phkeith@...

[Guest guest]

Hi Holly,

I did have two successful pregnancies when my creatinine was about where yours

is now. I carried both to term, both had good birth weights (7.6 and 8.4) and I

did not have significant complications. I did spill more protein during my

pregnancies, and had lots of edema, but other than that I was fine. My " baby "

is now 20 years old and a junior in college at USC. My kidney function has just

recently the past few years declined to the point where I am looking at dialysis

and/or transplant in the near future. I knew there were risks involved, but

never thought twice because my desire for children was so strong.

I know it is a very personal decision, and understand the struggle you are

feeling. Only you and your husband can make the decision for you and I wish you

all the best in making it. I know we made the right decision for us.

In a message dated 10/9/2004 10:42:05 AM Eastern Daylight Time, Holly Elmes

writes:

>

>My husband and I are at a point in our lives/marriage where we are considering

a family but there is hesitation due to the risks involved. I am 30 years old,

was diagnosed with IGA Nephropothy 4 years ago brought on by Henoch Schoenlein

purpura and the current status of my disease is mild (HAAS class II) and my last

24 hour collection indicated that my creatinine was 1.3 (an increase from my

last 24 hour collection), protein of 3.35 (about the same as last collection)

and blood creatinine of 1.1. The only " flare ups " that I experience is when I

get a cold, I see blood in my urine. Other than that, I am generally not

physically bothered by my disease.

>

>I have seen the head of Nephrology at a top hospital in Boston and his feeling

was that my disease should remain mild for the next several years and that I

" should go for it " with regard to pregnancy and that pregnancy is likely not to

cause a permanent decline in my kidney function.

>

>I have also seen a high-risk OB in NYC that specializes in Preeclamsia and

patients with other medical conditions such as mine. He went over the risks

(multiple miscariages, onset of early preeclamsia, low birth weight) but said

that I should be fine in terms of my Kidney status post-partum. Because my

kidney function has declined over the past several years, he feels that time is

definitely a factor and that I should consider getting pregnant soon.

>

>So, these 2 doctors were definitely more encouraging than my docs here in

Michigan have been and both seem to feel that pregnancy should not effect my

kidney function post-partum. However, there is still that possibility that it

will and given that my disease is currently mild, I would like to keep it that

way for many more years to come. Also, I think about the emotional toll of

having multiple miscarriages, or, worse having to terminate the pregnancy

because of an early onset of preeclampsia. There is also the risk of pre-term

labor and the struggles involved with a premature baby. Are we crazy to even

consider getting pregnant? But on the other hand, there is a possibility,

perhaps a small one, of none of this happening or that I will experience a

somewhat " normal " pregnancy.

>

>To get to the point, I am hoping to find other women who have gone through a

similar struggles and contemplation when trying to decide if getting pregnant is

something they want to do. I just don't know how I'll ever be able to come to a

decision, so I am looking to hear how others weighed the pros and cons and came

to a conclusion.

>

>Thanks,

>Holly

>

>

>

>

>Holly Elmes

>Passport In Store Manager

>Macy's West

>phkeith@...

>

>

>

>

>

>

[Guest guest]

Dear Holly,

I am 29 and was just diagnosed this past spring. I already have a 18

month year old daughter. During my pregnancy with her I had no idea I

had had this condition, however, my OB was concerned about the

microscopic blood in my urine as well as mild protein spillage toward

the 35th week of pregnancy. I also had intermittent hypertention that

started about 5 years ago. Interesting, my blood pressure was

exceptionally low during the first 2 trimesters but began to rise

toward the very end, at 37 weeks gestation (full term) I was induced

and had a very healthy baby girl. I am lucky never to have

miscarried.

Since I still had microscopic blood in my urine, I was referred to a

urologist who discovered a kidney stone (it still hasn't passed).

However, that was not the source of blood, so he refered me to a

nephrologist who gave me a presumed diagnosis of Iga Nephropathy.

The first thing I thought of was my risk involving another pregnancy.

He also said the sooner the better. He would just switch my blood

pressure medication to one that wouldn't harm the fetus and told me

that I would be high risk and may be refered to a perinatologist. My

recovery went smooth and my kidney function is stable ever since.

The only difference post partum is that now I have episodes of

macroscopic hematuria during the course of an illness.

I am getting a second opinion about child bearing from another

nephrologist in November and hopefully will try to get pregnant

sometime after April 2005. I will be 30 years old and am confident

with what I have researched along with other success stories from

other moms in this support group. I feel that as long as you are in

good medical hands and your neprologist has given you the green light

to have a child, I say go for it! I will support you all the way.

Remeber that everything in life is a risk. From getting into your car

every day to getting married. I was terrified about the entire idea

of pregnancy before I had this condition, but realized over time that

there are no guarantees in life. So instead of worring myself to

death, I educated myself, found decent medical care, and luckily got

pregnant. It sounds as though you have really done your homework and

will likely do the same.

Where do you live in Michigan? I went to school at Michigan State and

my husband lived in Rochester Hills, MI for several years before we

moved to Colorado. We were just there last weekend for a wedding in

Farmingrton Hills.

I don't think the medical care is " top notch " in Colorado or in

Michigan. I would tend to favor a Nephrologist's opinion on the east

coast like you did. My family lives on the east coast and I would

love to move back for the progessive state-of-the-art health care.

Anyway, it was good to chat and I hope to continue hearing from you.

Best of luck

Christa

> My husband and I are at a point in our lives/marriage where we are

considering a family but there is hesitation due to the risks

involved. I am 30 years old, was diagnosed with IGA Nephropothy 4

years ago brought on by Henoch Schoenlein purpura and the current

status of my disease is mild (HAAS class II) and my last 24 hour

collection indicated that my creatinine was 1.3 (an increase from my

last 24 hour collection), protein of 3.35 (about the same as last

collection) and blood creatinine of 1.1. The only " flare ups " that I

experience is when I get a cold, I see blood in my urine. Other than

that, I am generally not physically bothered by my disease.

>

> I have seen the head of Nephrology at a top hospital in Boston and

his feeling was that my disease should remain mild for the next

several years and that I " should go for it " with regard to pregnancy

and that pregnancy is likely not to cause a permanent decline in my

kidney function.

>

> I have also seen a high-risk OB in NYC that specializes in

Preeclamsia and patients with other medical conditions such as mine.

He went over the risks (multiple miscariages, onset of early

preeclamsia, low birth weight) but said that I should be fine in terms

of my Kidney status post-partum. Because my kidney function has

declined over the past several years, he feels that time is definitely

a factor and that I should consider getting pregnant soon.

>

> So, these 2 doctors were definitely more encouraging than my docs

here in Michigan have been and both seem to feel that pregnancy should

not effect my kidney function post-partum. However, there is still

that possibility that it will and given that my disease is currently

mild, I would like to keep it that way for many more years to come.

Also, I think about the emotional toll of having multiple

miscarriages, or, worse having to terminate the pregnancy because of

an early onset of preeclampsia. There is also the risk of pre-term

labor and the struggles involved with a premature baby. Are we crazy

to even consider getting pregnant? But on the other hand, there is a

possibility, perhaps a small one, of none of this happening or that I

will experience a somewhat " normal " pregnancy.

>

> To get to the point, I am hoping to find other women who have gone

through a similar struggles and contemplation when trying to decide if

getting pregnant is something they want to do. I just don't know how

I'll ever be able to come to a decision, so I am looking to hear how

others weighed the pros and cons and came to a conclusion.

>

> Thanks,

> Holly

>

>

>

>

> Holly Elmes

> Passport In Store Manager

> Macy's West

> phkeith@s...

>

>

>

>

>

>

[Guest guest]

Holly,

When I was diagnosed I was 31 and creatine was 4.5. I was told not

to get pregneant. i would have to have transplant first now. I also

have aortic regurg which would get worse if I was pregneant. I don't

know how high your risks for miscarraige etc are-but if they are

fairly low I would try sooner than later.

Best of luck,

christine

> My husband and I are at a point in our lives/marriage where we are

considering a family but there is hesitation due to the risks

involved. I am 30 years old, was diagnosed with IGA Nephropothy 4

years ago brought on by Henoch Schoenlein purpura and the current

status of my disease is mild (HAAS class II) and my last 24 hour

collection indicated that my creatinine was 1.3 (an increase from my

last 24 hour collection), protein of 3.35 (about the same as last

collection) and blood creatinine of 1.1. The only " flare ups " that I

experience is when I get a cold, I see blood in my urine. Other than

that, I am generally not physically bothered by my disease.

>

> I have seen the head of Nephrology at a top hospital in Boston and

his feeling was that my disease should remain mild for the next

several years and that I " should go for it " with regard to pregnancy

and that pregnancy is likely not to cause a permanent decline in my

kidney function.

>

> I have also seen a high-risk OB in NYC that specializes in

Preeclamsia and patients with other medical conditions such as mine.

He went over the risks (multiple miscariages, onset of early

preeclamsia, low birth weight) but said that I should be fine in

terms of my Kidney status post-partum. Because my kidney function

has declined over the past several years, he feels that time is

definitely a factor and that I should consider getting pregnant

soon.

>

> So, these 2 doctors were definitely more encouraging than my docs

here in Michigan have been and both seem to feel that pregnancy

should not effect my kidney function post-partum. However, there is

still that possibility that it will and given that my disease is

currently mild, I would like to keep it that way for many more years

to come. Also, I think about the emotional toll of having multiple

miscarriages, or, worse having to terminate the pregnancy because of

an early onset of preeclampsia. There is also the risk of pre-term

labor and the struggles involved with a premature baby. Are we crazy

to even consider getting pregnant? But on the other hand, there is a

possibility, perhaps a small one, of none of this happening or that

I will experience a somewhat " normal " pregnancy.

>

> To get to the point, I am hoping to find other women who have gone

through a similar struggles and contemplation when trying to decide

if getting pregnant is something they want to do. I just don't know

how I'll ever be able to come to a decision, so I am looking to hear

how others weighed the pros and cons and came to a conclusion.

>

> Thanks,

> Holly

>

>

>

>

> Holly Elmes

> Passport In Store Manager

> Macy's West

> phkeith@s...

>

>

>

>

>

>

[Guest guest]

> To get to the point, I am hoping to find other women who have gone through a

similar struggles and contemplation when trying to decide if getting pregnant is

something they want to do. I just don't know how I'll ever be able to come to a

decision, so I am looking to hear how others weighed the pros and cons and came

to

a conclusion.

>

> Thanks,

> Holly

>

>

Holly,

I was diagnosed when I was twenty-six and just married. Raising a family really

didn't

enter my radar until I was 28, in 1996. For the most part my numbers were very

good.

We spent time with my neph, time with a parinatologist, and time doing any

research

we could. The only limited study we could find at the time about women,

pregnancy

and IgAN was done in Japan on a rather small sampling. We struggled with all of

the

variables, struggled for a long time. I couldn't make a decision and often

dreamed of

" coming up pregnant " so I wouldn't have to make a (consious) choice. Then I got

the

flu, very badly, and my husband was so distraught over my state that he said he

couldn't handle the idea of my being pregnant. He wanted me as well as I could

be

and asked me to seriously consider giving up thinking anymore about pregnancy.

It

took time for me to really know what I wanted. In the end I wanted to be as

healthy as

I could be, to know that I had done everything to keep myself healthy. I also

realized

that my being a mommy wasn't about my biology or about my husband's. Life is

full

of risk, but I needed to know I wasn't adding to my body's burden.

So, we where blessed last year with our beautiful son through adoption. He came

home from the hospital with us when he was three days old, and today I still

look at

him with joy and am amazed I am his Mama. Like I said, I'm very aware there are

no

gaurantees and life is full of risk. I chose a different set of risks to take.

Each of us is

unique, and we each want different things. It can take time to make a decision,

and in

part that's so very frustrating since it's time the forces the issue.

I hope you don't mind a story of someone choosing not to get pregnant. I wish

you

joy in whatever path you choose. (By the way, I'm in the SFBay too)

Peace,

[Guest guest]

Hey,

My stats were very similar to yours when I got pregnant. And the

coolest thing about being pregnant was that my IgAN actually went away

for 7 months! (And two after that). I was worried about miscarriage

too - but I was more worried about NOT getting pregnant - so when I

found out I had BEEN pregnant by having a miscarriage I actually

celebrated - and two months later I was pregnant with my now 4.5 month

son. I hate my disease as it robs my energy - but I will not let it

rob me of anything else. My baby is SO incredible and I will

absolutely have another. Go for it! And good luck. Please feel free

to ask me any questions.

[Guest guest]

,

Thank you for your story. Of course I don't mind hearing stories of those that

chose not to get pregnant...I appreciate everyone being so open about a very

personal thing.

Thanks again.

thewhologans wrote:

Holly,

I was diagnosed when I was twenty-six and just married. Raising a family really

didn't

enter my radar until I was 28, in 1996. For the most part my numbers were very

good.

We spent time with my neph, time with a parinatologist, and time doing any

research

we could. The only limited study we could find at the time about women,

pregnancy

and IgAN was done in Japan on a rather small sampling. We struggled with all of

the

variables, struggled for a long time. I couldn't make a decision and often

dreamed of

" coming up pregnant " so I wouldn't have to make a (consious) choice. Then I got

the

flu, very badly, and my husband was so distraught over my state that he said he

couldn't handle the idea of my being pregnant. He wanted me as well as I could

be

and asked me to seriously consider giving up thinking anymore about pregnancy.

It

took time for me to really know what I wanted. In the end I wanted to be as

healthy as

I could be, to know that I had done everything to keep myself healthy. I also

realized

that my being a mommy wasn't about my biology or about my husband's. Life is

full

of risk, but I needed to know I wasn't adding to my body's burden.

So, we where blessed last year with our beautiful son through adoption. He came

home from the hospital with us when he was three days old, and today I still

look at

him with joy and am amazed I am his Mama. Like I said, I'm very aware there are

no

gaurantees and life is full of risk. I chose a different set of risks to take.

Each of us is

unique, and we each want different things. It can take time to make a decision,

and in

part that's so very frustrating since it's time the forces the issue.

I hope you don't mind a story of someone choosing not to get pregnant. I wish

you

joy in whatever path you choose. (By the way, I'm in the SFBay too)

Peace,

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

home page:

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

To unsubcribe via email,

iga-nephropathy-unsubscribe

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]

,

Thank you so much for sharing your story. What a beautiful story of love.

There are so many children in this world who need good homes and I have so much

respect for those who open their homes and hearts to them through either foster

care of adoption. It shows what a special couple you are.

In a message dated 10/10/2004 1:08:35 AM Eastern Daylight Time, " thewhologans "

writes:

>

>

>  

>> To get to the point, I am hoping to find other women who have gone through a

>similar struggles and contemplation when trying to decide if getting pregnant

is

>something they want to do. I just don't know how I'll ever be able to come to a

>decision, so I am looking to hear how others weighed the pros and cons and came

to

>a conclusion.

>>  

>> Thanks,

>> Holly

>>

>>

>

>Holly,

>I was diagnosed when I was twenty-six and just married. Raising a family really

didn't

>enter my radar until I was 28, in 1996. For the most part my numbers were very

good.

>We spent time with my neph, time with a parinatologist, and time doing any

research

>we could. The only limited study we could find at the time about women,

pregnancy

>and IgAN was done in Japan on a rather small sampling. We struggled with all of

the

>variables, struggled for a long time. I couldn't make a decision and often

dreamed of

> " coming up pregnant " so I wouldn't have to make a (consious) choice. Then I got

the

>flu, very badly, and my husband was so distraught over my state that he said he

>couldn't handle the idea of my being pregnant. He wanted me as well as I could

be

>and asked me to seriously consider giving up thinking anymore about pregnancy.

It

>took time for me to really know what I wanted. In the end I wanted to be as

healthy as

>I could be, to know that I had done everything to keep myself healthy. I also

realized

>that my being a mommy wasn't about my biology or about my husband's. Life is

full

>of risk, but I needed to know I wasn't adding to my body's burden.

>

>So, we where blessed last year with our beautiful son through adoption. He came

>home from the hospital with us when he was three days old, and today I still

look at

>him with joy and am amazed I am his Mama. Like I said, I'm very aware there are

no

>gaurantees and life is full of risk. I chose a different set of risks to take.

Each of us is

>unique, and we each want different things. It can take time to make a decision,

and in

>part that's so very frustrating since it's time the forces the issue.

>

>I hope you don't mind a story of someone choosing not to get pregnant. I wish

you  

>joy in whatever path you choose. (By the way, I'm in the SFBay too)

>

>Peace,

>

>

>

>

>

>

>

>

>

>

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

>home page:

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

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>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]

Holly,

I had my son 3 years ago with some problems. Pregnancy has been

concern to me as well. I just got married and my husband and I wish

to have children together some day. I have talked to my nephrologist

about the complications I had with my first pregnancy (preeclampsia,

elevated liver enzymes). He said that those problems were probably

caused by my having IgA. He did say that any pregnancies I had would

be high risk and that I would have to be closely monitored but that

it was possible for me to have a healthy baby. I'm glad to hear that

you got similar opinions. - Shara

> My husband and I are at a point in our lives/marriage where we are

considering a family but there is hesitation due to the risks

involved. I am 30 years old, was diagnosed with IGA Nephropothy 4

years ago brought on by Henoch Schoenlein purpura and the current

status of my disease is mild (HAAS class II) and my last 24 hour

collection indicated that my creatinine was 1.3 (an increase from my

last 24 hour collection), protein of 3.35 (about the same as last

collection) and blood creatinine of 1.1. The only " flare ups " that I

experience is when I get a cold, I see blood in my urine. Other than

that, I am generally not physically bothered by my disease.

>

> I have seen the head of Nephrology at a top hospital in Boston and

his feeling was that my disease should remain mild for the next

several years and that I " should go for it " with regard to pregnancy

and that pregnancy is likely not to cause a permanent decline in my

kidney function.

>

> I have also seen a high-risk OB in NYC that specializes in

Preeclamsia and patients with other medical conditions such as mine.

He went over the risks (multiple miscariages, onset of early

preeclamsia, low birth weight) but said that I should be fine in

terms of my Kidney status post-partum. Because my kidney function

has declined over the past several years, he feels that time is

definitely a factor and that I should consider getting pregnant

soon.

>

> So, these 2 doctors were definitely more encouraging than my docs

here in Michigan have been and both seem to feel that pregnancy

should not effect my kidney function post-partum. However, there is

still that possibility that it will and given that my disease is

currently mild, I would like to keep it that way for many more years

to come. Also, I think about the emotional toll of having multiple

miscarriages, or, worse having to terminate the pregnancy because of

an early onset of preeclampsia. There is also the risk of pre-term

labor and the struggles involved with a premature baby. Are we crazy

to even consider getting pregnant? But on the other hand, there is a

possibility, perhaps a small one, of none of this happening or that

I will experience a somewhat " normal " pregnancy.

>

> To get to the point, I am hoping to find other women who have gone

through a similar struggles and contemplation when trying to decide

if getting pregnant is something they want to do. I just don't know

how I'll ever be able to come to a decision, so I am looking to hear

how others weighed the pros and cons and came to a conclusion.

>

> Thanks,

> Holly

>

>

>

>

> Holly Elmes

> Passport In Store Manager

> Macy's West

> phkeith@s...

>

>

>

>

>

>