Monday, January 29, 2007

Permanent Measures

A doctor asked me the other day if I wanted her to tie my tubes.

"Um, what?"

"Well, pregnancy and a progressive disease. They don't mix."

She has a point. Also, PKD is an inherited disease. If I have more children, they have a 50% chance of having PKD. That's just a flip of the coin. Of course, I tell myself that in 30 years, when the disease will manifest itself and start causing problems, medicine will look a lot different than it does right now. But then again, there's lots of diseases that have been around longer than 30 years that still stump everyone.

Dh and I have never considered permanent birth control measures, just because we have spent so much of the last few years of our marriage focusing on the growth of our family, not vice versa. Maybe it's time to think of the vice versa.

Anybody else out there been advised by doctors regarding PKD and childbirth?

I have read statistics, of course, and it seems that every woman is different, although it does appear that women who have had more pregnancies have a higher rate of renal failure and more liver cysts. Still, with so much variance in every woman, I would love to hear from any women out there who have pursued motherhood, despite PKD.


Jess said...

I was told that a pregnancy was probably not in my best interest. When I was in my early 20s, my kidney function was such that a pregnancy would likely have resulted in permanent kidney damage. I also, because of my high blood pressure, had a higher risk of pre-eclampsia.

My ADPKD showed itself when I was in utero. I was born symptomatic and was pretty seriously ill for the first year of my life. My mother lost several babies that she and I both think had even more severe manifestations of PKD. Because my PKD is so aggressive, my husband and I decided not to pursue biological children. That was a very hard decision.

That said, I just came downstairs from putting my daughter to bed. We adopted her when she was six months old, and while she's a stubborn little bug--I think that comes with being four--she's also a wonderful kid, and we're very lucky to have her. So you can still pursue motherhood without having to pursue pregnancy as well. ;)

Heather O. said...

Thanks for sharing, Jess. I actually have one son already, who was born without complications before we knew I had PKD. We are just thinking about future options for expanding our family, and we have definitely not ruled out adoption. I'm glad to hear that you have had such a good experience.

My son is 4 years old, too. They can be pretty stubborn little creatures, can't they!

SusanS said...

Take care of yourself.

Jack Nowicki said...

Worrying about having a child with PKD would have bothered me greatly, although I had three children before I even knew I had PKD. So far, it seems they are okay although we haven't gone the route of genetic tests. I just found your blog today through Nathan's and invite you to check out my blog on my experiences dealing with being on dialysis. Good luck figuring out about having children. JN

Angela said...

My husband has PKD but has not gone on dialysis yet. He is 43 years old. The way the disease seems to manifest in his family involves dialysis at around age 50. However, he was diagnosed early and has been taking bp meds, exercising, watching protein intake, etc. so hopefully we can stave it off a little longer.

We have a son who is (of course) the love of our life. I want another child and this is a point of disagreement between myself and my husband.

I fluctuate between "let science of the future figure it out. It is late onset so the child will be needing dialysis/transplant in the year 2060. What will that world look like?" and "Don't risk it. Go to the sperm bank and find a blood/backround match with my husband and get inseminated. That way, we can have another child and that child may be a potential donor for our existing child (if he chooses to be when he is an adult). I want another child more than an organ factory for my existing child, but that thought did cross my mind.

Sorry for the long rant, but this is something that is a hard decision and I wanted you to know you are not alone in weighing the pros and cons. Take care,

Ahna said...

Just saw this post, sorry for commenting so late. My thoughts are about regrets. I was diagnosed with a fairly serious medical condition, not PKD, when DD was five, and I received the same advice: condition and pregnancy don't mix. Long story and many years later: we have an only child, and she will never have a sibling, for various reasons. Don't do this to your beautiful J. Add to your family however you can. Don't assume it will sort itself out. Life is short.

Heather O. said...

Thanks for all of the comments. Ahna, that's a powerful story, thank you so much.