Polycystic Kidney Disease (PKD) Support Group

As I read this post and all the replys I could not help but break down in tears. I am 24 years old and in a very long doctorate program. I want children so badly but I'm conflicted between the demands of my career and the risks of having a child. I don't want it to be too late for me. I feel like I'm working so hard for things I may not be able to enjoy. I thank everyone who replied with messages of hope.

I could have replied to this discussion long ago, but I wanted to read other people's view first. I noticed two things; 1) all repliers are female, and 2) they're all rather positive. I don't want to be viewed as a bad guy, but I try to follow any information about what we can do about having children.

To lay it out briefly, I see only four options; 1) Forget about having children, 2) Adopt a child, 3) IVF with non-PKD eggs, 4) Take your chances. As medical technology advances, we may have more options, but only time will tell.

I would like to have children, but I find myself a special case. Let me ask your opinion?

I am a genetic mutation. No one in my family has it and PKD is not known to skip generations. According to my geneticist, I have a gene that they have not known to develop into PKD. If I have children with PKD, they will carry the same genetic marker. I may be the pregenitor of a new strain of PKD. What do you think I should do?

Currently, I am single, but I beleive I am subconsciously avoiding any possibility of a relationship. In other words, I've slowly been leaning towards option #1.

Option #2 is good, because there are a lot of kids in the world that need adopting.

Option #3 is also good, but costs a lot of money and may be a burden on your wife.

Option #4 is going to the casino.

Waterrat...thank you for giving me the courage to post what I originally wanted to post:

*deep breath*

Let me start off by saying that I feel 110% that this question is still a personal choice and I don't judge anyone for the decisions they make in their own lives.

I am 26 years old and I love children more than anything in the world.

I even got the opportunity to work with children of all ages for 7 years...I even worked with teens! (oooh boy..haha)

My lifelong dream aside from becoming a famous writer has always been to have 3 children.

3 years ago...when I started to show symptoms from PKD....I started to learn and research about the disease. I was diagnosed at age 7 but no one ever really talked about it. I just knew family members were suffering and a couple died from end stage renal failure.

So....when I learned of the risks of passing it on to my children....I started to reevaluate things.

Now...3 years later...with kidneys this size of grapefruits and constantly suffering every day from the pain this disease can cause I know for a fact that I could never risk inflicting a child with this. Adopting is a GREAT option....unfortunately not one I will be able to utilize because due to physical incapability I will never properly be able to care for a child at this stage in my life....and we never know for sure if that will change with PKD...because PKD is something we all live with that doesn't necessarily have a timeline.

We only hope that doctors and researchers can learn all they can to help us all in a big way someday....and that for me, is enough.

So, I have decided to not have children of my own for sure. I would feel selfish....I would only want the child for me...and yes...I do believe in the faith that many parents have and the chance of the child not having PKD is a high one....but it's too even with the chance that they will be born with it.

And due to recent developments with my PKD case, a pregnancy for me would mean a high risk of death from complications for me or for my child.

So....I made the choice. And the choice is one I feel happy with even though some days having a baby is all I think about.

I am blessed to have a lot of children in my family and to have friends who are starting families of their own and the time I get to spend with these children is enough for me too :)

I wish all parents and especially PKD parents a big hug today and every day. Children are a blessing and look what would have happened if my parents would have decided not to have me? haha I wouldn't be here!

So...again...I don't judge anyone's decision and I wish everyone the absolute best with their decision.

I just felt compelled to share my personal experience with facing this decision.

*big hugs for all*

And thank you again Waterrat ;)

I myself do not have polycistic kidneys, however my husband does. Prior to his diagnosis we had one child, age 5. My husband has a mother with PKD, an uncle who died of PKD, 2 uncles without PKD, and 100% of his brothers and cousins are + for PKD. We love our son dearly and looking back, would not have changed a thing. Now, we are considering have more children, and weighing as to weather or not we should have our own, adopt, PGD...ect. For the records, my husband's mother was on Peritoneal dialysis for about 1 year prior to receiving her transplant, and is doing well, with no post transplant complications. In fact, she is basically her old self. Just wanted to give you some hope.

We have faced other family members who think that having another child would be selfish on our behalf to bring a sick person into this world. It is a difficult decision, and i know that my 5 year old will now have to watch all of his uncles, and above all his father suffer in the near future from this disease, and wonder what is instore for his own future. It breaks my heart as a mother to even think of my child having to grow up watching his loved ones suffer this way. I would also like to comment that since 100% of my husband current family generation has this disease, there will be very little support from family members, as they are all beginning with problems now. I worry about finacial and emotional issues that will arise in the next few years, with no family to support, since they will be dealing with their own issues. In my son's case, there will be no relative for him to see without the disease, and thus he will be left to watch all relatives suffer with the disease. Again, although i would have never chosen not to have our son, it is a difficult thought to think of my beloved son watching this happen to his family, and knowing, that the odds are, he will be in that place some day. I know for my husband it broke his heart to see his mother, and uncle go through treatments. For my husband, he at least had two healthy uncles to experience, although odly enough, the healthy uncles chose not to have children.

Imo, I wouldn't have had children knowing what I do now about this disease. I am a "mutant" as no one in 3 generations on either side of my family has had kidney diseases. So I did not know I even had PKD/PLD until I had already had my children. If I had watched family members suffer and die because of this disease, I could not have passed it on. The last thing a mother wants is to bring pain to her children. Even now it eats me alive knowing that my children could be going down this path one day even though I didn't know. It's a personal decision but I will say that I cringe inside when I hear someone with PKD say they are going to have kids anyways.

I made my decision long ago. I am 58 and have no children. For me, 50% was too much of a chance. My father died 50 years ago, when I was 8 years old. When I was diagnosed with PKD in my early 30s, we made the decision to not have children. In the absence of any treatment, never mind a cure, I chose to not risk passing the disease along. In my family, it stops with me.
My Dad died at age 39. The course of my disease has been very different, since I've lived almost 20 years longer than he did.
My choice was made for 2 reasons.
-If I brought a child into the world, the chances that I would not be there to raise the child were too great. The grief of my father's death at such an early age was something I wouldn't put a child through.
-In the absence of treatment, or at the time, even the chance of treatment, I decided not to risk a child's life.
Do I regret my choice? Sometimes. But I am satisfied that I didn't add to the PKD population.

I, too, have no children, Neither does my sister, who also has PKD. The only regret about not having children (aside from the possibility of them having the disease) is that I have no one really to "hand down" my experience, like all fathers get to do.

It's pretty much the only major aspect of life that I have missed.

Still, I am edified by the fact the "buck stopped here!"

Peace and Blessings!
CoachRichie