Don't you feel guilty? Having kids when you know you have PKD?

[Des]

I did not know that I had PKD when I had my kids as I was adopted and did not have a medical history on my parents.

But some people still have kids knowing that they each have a 50% of having the disease. I was thinking that if  I knew about the PKD would I still have had kids? I honestly don't know.

Someone told me once that if we do not have kids because of a history of diabetics, heart problems, cancer, obesity and other illnesses that may be heridiraty (spelling sorry) no one would be having kids.

What is your take on this?
 

[twirl]

I have been criticized by a member of IHD for having children and I was upset for weeks --
then some members posted and I felt a little better -
I knew I had PKD and I told docs and they reported that sometimes you have it and never have problems - I went to all kinds of doc - it took us 10 years to have children - it was a fertility issue -
my two daughters have cysts on their kidneys and we do not know about Allen -- they have all told me that they have had good childhoods and they are not asking,"why did I have to be born" -- they have been to dialysis with me and they know what it is like -
I love my children and this is selfish but I don't know what I would do without them -
my twin does not have PKD and neither does my older sister -
there is a post about this and I will try and find it to show you -
guilt is a large part of my life --

how will your daughter face this issue

[Des]

Thank you so much Twirl for sharing. I will not judge at all. I just needed to share this feeling. (Someone also said that they also have a 50% of not having it.)

I do feel responsable for what I do to my kids. I am not sorry that I have them but I dread the day (very soon) that I have to have them tested to see if they have cysts or not. It is like a dark thing hanging over my head.  I feel like I gave them this ... and the sicker I get the more worried they must feel about their future.
I know they won't be able to get life insurance because of their family's history with PKD. My eldest said if she has it she won't get married or have kids.... now you know why I feel so awful.

 

[twirl]

she might change her mind
my doc said do not go looking for PKD
and what am amazing thought -- 50% of not having PKD -
like I posted my twin does not have it and neither does my older sister -
I have good insurance --
I got it with my school district
one year they had a plan where testing before getting a disabilty policy was not required -
so I signed up for it -
and now I am on it -
at the time I was not sick and had no idea what was around the corner for me

[Des]

Thanks again......

[Jean]

Thats an interesting question. As women our love for our child grows as the baby grows inside of you. There is no way to know the depths of love until you hold your child in your arms. I do not have PKD, just normal old kidney disease, but looking at my kids now, would I have brought them into this world if I thought I might pass something on to them that is so dreadful to face, I don't know. However, I would not give up a minute of my life with them. I think it is easy to say, no, I would not have had them, but it is a different story inside your heart. And with any kind of luck, they would get only the father's genes. It's easy to say, no, I wouldn't marry, but when you are lin love, it's another story, and all but impossible to resist.

[del]

Just because you have PKD doesn't necessarily mean your child will have it.  50% chance they will not inherit it.  A lot of people have children and find out after that they have some disease that is inherited. I don't think you should feel guilty for having kids when you have PKD!!

[paul.karen]

Good Question.

I wouldn't fault anyone for having children if they know they have PKD.

You could be a perfectly fit non smoking non drinking church attending person and your child could be born with cancer or many other terrable things life can throw our way.
I wouldn't want my mother to have missed out on raising me (although i was far from perfect) and i sure am glad i got to be with my mom.  You can live a pretty darn near perfect life with dialysis.  Other then having dialysis. 
Now if i knew i would have a down syndrome baby or even a 50/50 chance that would be a much harder decision then having a baby with a 50/50 chance of having PKD>

I have three brothers i am the only one with PKD.  I am not mad at them or my mother.  If i wasn't born well.............I would never have known Love sadness joy the good the bad the list is infinitive.  I dont think my mother even back in her day if she had known 100% i would have PKD made a mistake.  She gave me what no other person ever could, the gift of life.

[Des]

Paul.

This was such a nice reply!

Thanks... you have no idea how much it means to me.

[Des]

Thanks to all my IHD family.

I know I feel much better now.... I think Twirl will as well.

[Goofy]

That is a hard question.  I'm not sure, but I think I still would have and prayed they don't get it.  I know if my kids had the choice of PKD or not being here, they would choose the PKD.

My kids are 32 and 29. They want to get tested but I don't want them to. If they have it, there really isn't much they can do about it EXCEPT have it etched in their brain that maybe some day they will be on dialysis.  I was diagnosed about 15 years ago and at that time I thought my life was over then over the years, you kind of forget about it. 

Now that I'm actually in failure. I don't go through a single day that I don't think about it.  Some days I'm obsessed with it and it makes it hard to get through the day.  It effects my performance at work, my home life and my social life.

I really wish I never knew until I just got sick one day.  I know some will say that's foolish, but for me, the mental aspect of it is torture.  Because I don't want my kids tested, I tell them to keep an eye on their blood pressure.  And they know its in the family so at least they can keep on eye on symptoms.

I'm afraid because they won't get health insurance or life insurance, plus I don't want them to be obsessed about it like I am.  But the final decision is up to them.  They are adults and if they want to get tested, they can.

[Goofy]

Actually my daughter is getting married next year and she plans on having children.  Both of my kids know the could have it, but neither one of them has ever said they don't want children because they may have it.

I guess you have to look at the glass...half full....half empty?  I'm the half empty kinda person. There is a 50% they may have it (so I'm surprised I'm going to say this) but" there is a 50% chance they don't!

My kids are the 50% full kinda people.  They must have gotten that from their father!

I've always said that if I had to pick an organ that I needed to have transplanted, I'd pick the kidney.  At least you have a chance to live; it may be on a machine, but you can sure live a lot longer then if you needed a heart, liver or lung transplant.

[Deanne]

I chose not to have children, but FSGS (not PKD) was only one of my determining factors. If you think about it, it seems like just about everyone has something wrong with them by the time they reach middle age. The guy who sits next to me at work needed emergency surgery a couple of years ago. Before then, he thought he was healthy. Look at all of the people who struggle with obesity. That's probably 30% of our population with a medical issue right there. Then all the people with conditions you don't see just to look at them. Maybe the person sitting next to you will die of cancer in the next couple of years. The woman next door might have heart disease lurking in her future. The teenager the next block down might struggle with mental illness for the rest of his life. None of us has perfect bodies. So maybe everyone should feel guilty about bringing children into the world (maybe everyone *does* feel guilty about it to some degree).

[paul.karen]

GOOFY

If i may say.
It would be wise to have your children get themselves tested.  For one it is a real disease ignoring it wont make it go away or get better.

And maybe they wont have it?  burdon gone.
But the bigger fact is if they do have it there is so much they can do to SLOW the progress down.  True they will never be rid of it.  But instead of having to start dialysis at 40 or 42 like me with a proper diet exercise and meds they may be able to put dialysis off for ten fifteen or even five years.
Every year off dialysis has to be better then a year on dialysis.  This site is about proactive approaches and being ready when the time comes.
Hiding from a bloodtest only hurts one person.  The person hiding.

I'm not trying to be mean or misunderstanding.  I also didn't want to know if i had it.  And my doctor said (to late for me) if we had caught it earlier we could have prolonged the outcome.

Just my

P&K

Ps. thx Des :-)

[kitkatz]

Here is my two cents.
It sucks with PKD in your life.
It sucks even worse when your kids have it!

[okarol]

If my parents knew about my dad's PKD they may have decided against having kids, and I might not have been born. I did not inherit PKD but my 2 sisters and my brother did. I know they are grateful to be alive. I have a daughter with kidney failure unrelated to PKD - just a mechanical malfunction of her bladder - something that could never have been predicted. We have a family history of cancer and alcoholism - both have had devastating and life-ending results. You don't get to pick your poison.

[dwcrawford]

I'm sure it does, Kat, but would it suck any worse if you didn't have kids?

Well said there, Okarol.  Sometimes a question is something other than a question.

[YLGuy]

Someone told me once that if we do not have kids because of a history of diabetics, heart problems, cancer, obesity and other illnesses that may be hereditary (spelling sorry) no one would be having kids.

What is your take on this?

I do not want to compare apples to oranges but... I come from a long line of alcoholics.  I know alcohol is a choice but I also know that my children have a higher chance of becoming addicted to alcohol because of my family history.  (I do not drink accept maybe 1 drink every other month at best-I do not get drunk).  I have seen the awful consequences that this disease can have but I still chose to have kids. Why?  I truly feel that my place in life was to be a daddy.  It is what I was placed on this earth for.  I have been blessed with 3 beautiful, smart and healthy children.  There are no words that would describe how much I love my kids.  I have always been there for them.  A friend once told told me before I had divorced that he noticed that I always put my children first while my ex put her needs first (I believe this still be true). 

I have talked to my children at length about their family history.  My oldest son starts college this month.  He asked me a couple of weeks ago if I thought it would be weird if he never drank alcohol.  He has seen drunk people and does not think it is okay.  I explained that there are many people who do not drink and that would be fine and acceptable. 

Is it selfish?  Probably a little.  I try to raise my kids to do the right thing-always.  I truly believe that this world is a better place with them in it and I pray that the disease that plagues my family never affects them.  I, of course, hope that their kidneys are healthy and stay that way.  My kidneys failed due to hypertension, not PKD. 

[Goofy]

Paul.Karen,

I know you are not trying to be mean or misunderstand and I understand what you are saying.....that if they get tested and don't have it, then they could have piece of mind.  But since I'm the "half empty" kind of person, I'd rather have them not get tested and just keep it in the back of their mind.

I've talked to several doctors about this and its about 50/50.  Some say they should get tested and some say don't.   The docs that agree with me feel the same way I do; they may never get health or life insurance.

My experience with knowing has been torture for me.  I don't want my kids to go through the same thing.  The only thing that I've always been told to "try" and slow the progression of the disease, is to watch my blood pressure.  I know certain meds are not good for your kidneys so my kids will just have to check to make sure any meds they may take, will not damage their kidneys.  And keep an eye on their blood pressure.  Other than that, I have no idea on how to slow it down.

To me, the most important thing is not to be tested, but knowing its in the family.  At least they are aware of it and can be proactive with their health care.

Its funny how people have different opinions!  There is nothing I can think of that helped me get this far without dialysis so I think what's the point of knowing taht one day you will end up on dialysis.  My kids don't seem to be obsessed with the idea that they could have it.  And I know some say they would feel guilty if they knew that they had it and had kids.  But never once have my children ever said they wish they weren't born because I have PKD.  I guess its all just a state of mind and sometimes I think I've lost mine!!

[Goofy]

Just a little thought........if my parents didn't have kids because my dad had PKD......I wouldn't be here debating this question!

[petey]

I'm sure it does, Kat, but would it suck any worse if you didn't have kids?

Take it from a couple who desperately wanted children but couldn't have any ... yes, it definitely sucks not to be able to have children (if you want them).

Marvin's kidney disease is hereditary, and cancer also has struck quite a few in his family (not him, thank goodness).  Heart disease is big in my mother's family, and pure meanness runs rampant in my dad's family.  Several in Marvin's family are diabetics (not him, thank goodness), and I had an aunt and a grandmother who were alcoholics (both died of cirrhosis).  Knowing all this, would we have taken the risk and had children anyway?  YOU BETTER BELIEVE IT!

With the type of people that I think Marvin and I are, I'm sure we could have helped any children we might have had deal with any disease we might have passed down to them.   Along with these "bad" genes, I like to think that we would have also passed down our good genes, too -- including the ones that help a person survive and flourish in a world full of unfairness and adversity.  I like to think we would have shown them that love, perseverance, acceptance, faith, and a happy heart would carry them through anything else they might have to live with/through.

There are worse things than passing down a chance of having a serious illness/disease to your children -- like not being able to be a parent in the first place.  Believe me; I know.
 

[Goofy]

One more thought.....it never even entered my mind that I would be upset with my parents for having me.  I am glad that I was diagnosed after my parents died.  I know my mom and dad would have felt terrible if they knew they passed PKD on to me.  But I would never blame them for my situation.

[del]

I'm sure it does, Kat, but would it suck any worse if you didn't have kids?

Take it from a couple who desperately wanted children but couldn't have any ... yes, it definitely sucks not to be able to have children (if you want them).

Marvin's kidney disease is hereditary, and cancer also has struck quite a few in his family (not him, thank goodness).  Heart disease is big in my mother's family, and pure meanness runs rampant in my dad's family.  Several in Marvin's family are diabetics (not him, thank goodness), and I had an aunt and a grandmother who were alcoholics (both died of cirrhosis).  Knowing all this, would we have taken the risk and had children anyway?  YOU BETTER BELIEVE IT!

With the type of people that I think Marvin and I are, I'm sure we could have helped any children we might have had deal with any disease we might have passed down to them.   Along with these "bad" genes, I like to think that we would have also passed down our good genes, too -- including the ones that help a person survive and flourish in a world full of unfairness and adversity.  I like to think we would have shown them that love, perseverance, acceptance, faith, and a happy heart would carry them through anything else they might have to live with/through.

There are worse things than passing down a chance of having a serious illness/disease to your children -- like not being able to be a parent in the first place.  Believe me; I know.

We really wanted children too but it never happened.  You said it better than I could petey     

[kellyt]

I don't have PKD, but I can tell you that I'm the only one in my family with ESRD.  With any kidney problems at all, really.  You just don't know I guess.       

[Jie]

I know I have PKD before I have kids. It is a difficult question and I struggled greatly before deciding to have kids. Overall, PKD is a lot better disease than some other illness, at last it does not start to affect daily life until 40 or 50 years old. About half of PKDers do not develop kidney failure at all. With the discovery of new methods to treat it in the future, some day, it may become curable.