Polycystic Kidney Disease (PKD) Support Group

Putting the children issue aside for a moment, a healthy diet is important for YOUR health and fruits and vegetables are essential elements of that diet. If you don't like fruits and vegetables or just haven't been exposed to them (or only exposed to the mushy canned varieties, which will turn anyone off most vegetables!), it's time to try something new. One of the best ways you can find fruits and vegetables you like is to try a new one each week, fresh from a farmer or farmers market and ask the seller what the best way to serve it is. The second option is to find out what is in season in your area of England and pick one new fruit and one new vegetable at the market each week and have fun with them. You may be very surprised to discover how much your tastes have changed from when you were a child. I used to hate asparagus and brussels sprouts. But now if I bake asparagus and brussels sprouts in the oven with a drizzle of olive oil (adding the asparagus later as they cook faster) they come out wonderful, just a little carmelized, not as the bitter, inedible things I remember from childhood. I found I liked asparagus years ago; the brussels sprouts I only discovered last year--at age 47!

So, on to folic acid. Folic acid supplements are important for women of childbearing age, but also for most renal patients as we tend not to get enough in our diet to offset the inflammation that seems to comes with PKD and can lead to high homocysteine levels in the blood and some cardiac complications. In addtiion, folic acid is essential prior to (for at least 4 months) and during pregnancy to avoid spina bifida, a serious birth defect. A discussion with your regular doctor or specialist is probably in order to ensure you're getting the appropriate supplementations to ensure all of your nutritional levels are appropriate. In some cases and definitely in yours right now, it's difficult to get all of your nutritional needs met through diet alone. Folic acid is one of the most common supplements and there's nothing unusual about being prescribed them or having them recommended.

So, on to children. This is a decision only you and your husband/signficant other can make. You have a 50/50 chance of passing PKD to each child you have; it's a flip of a coin with each child. All of your children may inherit PKD, none of your children may, or some of them may--no one can predict the outcome. With your background and the severe pain and infections that led to your diagnosis, chances are you will be a high risk pregnancy and may need a C-section instead of a vaginal birth to avoid the added pressure on your kidneys during delivery (I can't imagine pushing out a baby at all, let alone with enlarged cystic kidneys!).

Right now there is no treatment and there is no cure for PKD; only the symptoms can be treated. And while there are medications in the pipeline that may be effective at reducing the formation of cysts in the kidneys, they are not effective at reducing any of the extra-renal complications (cysts in any other organs, aneurysms, etc.). And a cure will involve genetic manipulation, something we are decades away from and will probably not see in my lifetime or yours.

I say this only to give you an idea of what a pregnancy of your own may bring a child into. I don't know your family history with PKD and a family history does not mean you or your children will necessarily follow in that path. But you need to be well informed and make a very educated decision.

Children are precious gifts and they come in many different packages. You don't necessarily have to carry a child to term to have a child; there are so many children who need loving homes. Adoption is a very viable option and a child is a child; you love them no matter who's womb they come from. I am a stepmother, but I can't imagine loving my stepkids anymore if I had borne them myself.

I made a decision as a teenager not to have chldren of my own after working at a crisis nursery and knowing how many children needed a loving home. Then I fell in love with an incredible man who already had 2 children not only didn't want more children, but respected my wishes not to pass along my PKD gene to any child of my own (he got the vascectomy). In my case, everyone in my family with PKD has died in their early to mid-40s with the exception of my brother and me and a cousin who's already post-transplant). I just couldn't knowingly bring a child into the world knowing what the my brother and I have been through with this disease, let alone the others in my dad's family, all whom had PKD (and the one cousin who didn't, who donated a kidney to his brother who did).

Again, only you can make this decision. Counseling, both genetic and traditional counseling, is a really good idea. You and your husband/signficant other really need to understand what you're getting yourselves into and make a very educated decision. It's not up to us to judge or make that decision for you, only to provide you our views from our personal perspective and experience.

Oh, as for the feeling the kidneys, some patients your age are actually diagnosed because of pain and pressure. A friend of mine was diagnosed because it hurt to sleep on her right side; she was 23 at the time. Her kidneys are large and she could definitely feel the right one, but has otherwise had no problems whatsoever. We're each unique and this disease expresses itself in its own unique way in each of us. We're not round pegs that fit nice and neat into round holes. It would be so boring that way!

I hope my ramblings helped!
Ruth

PS There is a PKD Charity in the UK; you may be able to get a bit more information from them directly within the UK. You can also get more information from the PKD Foundation at www.pkdcure.org; I believe they will send their information packages worldwide.

don't eat fruits and vegetables! you have no idea what you're missing.
Ruth is right on the money about canned veggies, they are not fit for human consumption in most cases. frozen are better but fresh are the best, especially if cooked till just crisp tender.
ripe fruit is great, what could be better than standing over a sink eating a peach that is so sweet and ripe it is running down your chin. eating grapes is like eating candy.
true, trying to have a baby when your diet is so deficient would be irresponsible. it would be irresponsible too to pass your dietary habits onto an innocent child.
Ruth's advice to try a different veggie every week is great. learn to cook them properly and try things like herbs and garlic for flavoring. try various fruits, especially in season, and check for ripeness.
having a baby is a very personal decision. most of us with PKD had our children before we had knowledge of the disease. many know they have it but choose to have children anyway. some, like Ruth, decided against it. there is no right or wrong decision.
what is important for you, children or not, is to get yourself in the best possible health. that means eating right, drinking lots of water and avoiding things like colas, too much coffee or other caffeinated drinks, little or no alcohol, no smoking, plenty of exercise. take care of those things first. to undergo pregnancy, for both you and the baby, you should be in optimal health.

Thanks - it really is nice talking to other people that understand. I am going to try eating the vegtables and fruit will be a little easier as I do actually like some! Heres hoping I can at least get healthy if only to help myself. Then I will have to think about everything else.
My mum carried 3 children without complications, however both my grandad and uncle died of kidney failure in there 70's. Is this a indication of how mine will get or is every case different?

Every case is different, although you are likely to follow the trend of others in your family. Sometimes the cysts themsleves cause more trouble than the lack of kidney function. It does make sense to see a doctor regularly to screen for high blood pressure and to keep tabs on your kidney function.


My sister has PKD and has 2 kids. She had them wheh she was 35 and then at 38 and both of her pregnancies were perfectly normal and healthy and she delivered vaginally. She has known about her PKD since she was 16 and has taken excellent care of herself. Her kids have a 50% chance of having PKD.

I also have PKD and tried to conceive but was unable to (I also started late...at 37). I ended up adopting my son and he is the greatest thing ever to have happened to me. I understand that these are very personal decisions and also that newborn adoption is rather uncommon in the UK. Just as having a child is a personal decision, so is adoption. It can be a difficult process. In the US most newborn adoptions are open, as is ours. We have a great relationship with our son's birthmom but this isn't for everybody.

Take care of yourself and ask lots of questions so that when the time comes you can make an informed decision. I do not regret being born, despite having PKD. I also do not regret not being able to have a biological child, and I am thankful my child will not have to deal with PKD...but like every other person he has a family history with some disease in it. I will be there for him if a time comes when he has to face a health challenge.

Best wishes.

Just in case you wondered, I am ever so thankful my parents were misinformed oh so many years ago when they were told PKD did not run in families and to go forth and had children. Had they known at the time that PKD did indeed run in families, I wouldn't be here (much to my chagrin and I'd like to think many others as well). My mother is still distraught that both of her children inherited PKD and woe be to the doctor who told her that it didn't run in families if she ever gets him in her sights (chances are he's long since died).

I had the advantage of better information when the time came for me to make a decision to have children and if I had decided to adopt, it would have been older children, ages 5 and up, who are generally considerd hard to place because they're not the cute newborns most families want. But instead I have those wonderful stepkids who keep me life full and involved and they never cease to amaze me.

Whatever you choose, just make it an informed decision.

Gentle hugs,
Ruth