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

[kickingandscreaming]

Unfortunately we are slow to develop better methods of testing.

We have LOTS of better ways of testing--computer modeling being a major one.  And yet, habit (devoid of ethics) dies hard.

[Charlie B53]

Unfortunately computer modeling is no better than the programmer.   There is no way a computer can foresee what actually occurs in life.

Would you trust your life to people like those that wrote 'Windows'?   I wouldn't recommend it.

[Athena]

I find myself disagreeing. I abhor animal cruelty just like the next person, but we still slaughter animals in order to eat them, don't we? I would like to think that the animals that are sacrificed in legitimate medical experiments are also sacrificed as humanely as what we would expect of the animal slaughterhouses.

[gothiclovemonkey]

I dont have PKD but ive had crappy health since childhood. I was told I 'couldnt' have children. (though, looking back I think they meant shouldnt!) And I mentally prepared myself for a life without a child while I was still a child myself. I never in a million years thought I would have a child, and convinced myself I didnt want them anyway.
My son was a complete surprise. (and as it turns out, I really love being a mom) I Had no idea I was even having kidney issues, as I actively avoided doctors as much as possible. Seemed every time I did go, they found something else 'wrong' with me. When I got pregnant, I didnt know, because I was never regular, so I went a few months before the taking a test (and thought i was wasting money, when i finally did lol) I was floored. I didnt believe it, but then I got really really excited. Everything changed, I was going to be a mommy. Then I started getting really sick, they thought preclampsia. They ended up doing an emergency C section and my son was born at 26 weeks. he was so tiny 1 lb 6 oz. 11 and 3/4 in long.... Cue the major guilt. My body failed me and my son. Then about 3 months later, I am still not getting better, they do a biopsy of my kidney. FSGS. I begin dialysis shortly after my sons 3rd birthday.
Hes 12 now, hes got issues due to being so early, and he also has to deal with mom always being sick. (ive got more than just the kidney crap, nowdays) it really breaks my heart that he has to endure any of this crap. i constantantly feel guilty and sad. Maybe id feel differently if his father was in his life. ( i even paid his father to watch him when i still worked, but as soon as i stopped, we havent seen him 2 times in the last 10 years.) Im all my son has. (Well, my dad is super grandpa though!! thank god for my awesome father!)
One thing, its probably a totally selfish thought, but, without my son, I would not be doing any of this crap. Hes literally my only reason for living. I fight every day for him. If he didnt exist, I would have died years ago.

[Athena]

I dont have PKD but ive had crappy health since childhood. I was told I 'couldnt' have children. (though, looking back I think they meant shouldnt!) And I mentally prepared myself for a life without a child while I was still a child myself. I never in a million years thought I would have a child, and convinced myself I didnt want them anyway.
My son was a complete surprise. (and as it turns out, I really love being a mom) I Had no idea I was even having kidney issues, as I actively avoided doctors as much as possible. Seemed every time I did go, they found something else 'wrong' with me. When I got pregnant, I didnt know, because I was never regular, so I went a few months before the taking a test (and thought i was wasting money, when i finally did lol) I was floored. I didnt believe it, but then I got really really excited. Everything changed, I was going to be a mommy. Then I started getting really sick, they thought preclampsia. They ended up doing an emergency C section and my son was born at 26 weeks. he was so tiny 1 lb 6 oz. 11 and 3/4 in long.... Cue the major guilt. My body failed me and my son. Then about 3 months later, I am still not getting better, they do a biopsy of my kidney. FSGS. I begin dialysis shortly after my sons 3rd birthday.
Hes 12 now, hes got issues due to being so early, and he also has to deal with mom always being sick. (ive got more than just the kidney crap, nowdays) it really breaks my heart that he has to endure any of this crap. i constantantly feel guilty and sad. Maybe id feel differently if his father was in his life. ( i even paid his father to watch him when i still worked, but as soon as i stopped, we havent seen him 2 times in the last 10 years.) Im all my son has. (Well, my dad is super grandpa though!! thank god for my awesome father!)
One thing, its probably a totally selfish thought, but, without my son, I would not be doing any of this crap. Hes literally my only reason for living. I fight every day for him. If he didnt exist, I would have died years ago.

That's a very beautiful story GothicCM. I could see myself feeling the exact same way as you if I had ended up having a child. We all need something to live for. You are so lucky that you do have someone to live and fight for 

[gothiclovemonkey]

I agree. extremely lucky.
And I really hope that me saying all that didnt upset anyone who cant or doesnt have a child

[Charlie B53]

My 2 cents.

The urge to procreate can be strong.  Some have elected to NOT have a child themselves yet adopt an abandoned child thus fulfilling not only their own need for Parenting but giving a child a future that may not have been otherwise.

Tough decisions in most all cases.

[Michael Murphy]

Speaking as some one with out kids.  I would have been a terrible parent in my 20s and 30s. As the old Jewish saying goes Too soon we grow old, too late we grow smart.  First I would have had to grow up, second I would have had to grow up.  Obviously I enjoyed those two decades. But honestly while I didn't have kids I admire the people who had them and took the time to raise them right, not perfectly but right. 

[Charlie B53]

Far too many do not spend time with their kids to teach them much of anything.    Way too many are in the street getting into trouble.   And when they do get caught family claim 'but he was a good kid'.   Parenting takes time and effort, if parents are not willing to teach them then they shouldn't have them.

I blame a lot on the violence of TV and movies.  Kids think it is great.   No one is there to tell them that the real world isn't at all like that.

These kids have no values.   Never learned respect for elders, nor anyone else other than for smeone that has a bigger gun and uses it.

It's just wrong.

[Simon Dog]

We have LOTS of better ways of testing--computer modeling being a major one.  And yet, habit (devoid of ethics) dies hard.

There is no way around the fact that there is no free lunch - there are some things for which animals are better.  No computer modeling will train a surgeon for a new technique like operating on animals will.  The first kidney transplants were done on dogs, and rejection was discovered when surgeons learned that a kidney relocated to a different location in a dog worked fine but one from another dog failed in a few days.   The first heart transplants were also done on dogs.

Although I have a problem with the ethics of experiments on dogs (I like some dogs more than a lot of people I know), there is no getting around the fact that there is no "easy out" of declaring "simulation and computer modeling can do everything experimenting on live animals can accomplish".

The ethical ability of a species to do things to "lower" species, even intelligent ones, that would be unthinkable within this species serves to support the Steven Hawking conclusion that contact with a far more advanced alien civilization could be disastrous to humankind.

[Athena]

Far too many do not spend time with their kids to teach them much of anything.    Way too many are in the street getting into trouble.   And when they do get caught family claim 'but he was a good kid'.   Parenting takes time and effort, if parents are not willing to teach them then they shouldn't have them.

I blame a lot on the violence of TV and movies.  Kids think it is great.   No one is there to tell them that the real world isn't at all like that.

These kids have no values.   Never learned respect for elders, nor anyone else other than for smeone that has a bigger gun and uses it.

It's just wrong.

Charlie, you are totally spot on. Violence has won out and we can see extreme putrid violence constantly in films and music. I went to see a movie that has some horrible violent scenes. The cinema was filled with a younger crowd. When a scene showed a man about to break another man's arm - the audience laughed while I looked away in revulsion. I looked to my side at some of these specimens of humanity and saw they were regular looking twenty something (not street thugs, in other words). I have never felt more alienated. The movie scene and general crowd response was very disturbing and it shows how low humanity has sunk to.

[kristina]

... Personally speaking, I don't think there is any real answer to this question, as to whether or not to have children, when suffering from an incurable,
chronic and possibly genetically inheritable disease ...  perhaps it is rather personal and, after all : 
... whatever people decide to do, they always have to live with their own conscience ...
That's my 

[pdpatty]

I have 2 inherited diseases. The firstone ,Ehlers Danlos Syndrome, I knew about when I had my daughter and son.
I didn't get real bad with PKD (not diagnosed) until in my late 50s.

My parents always felt guilty about the EDS .They both had passed when I found out about the PKD.
 I am so grateful for my children and heathy grandchildren.  No time for guilt.

[Simon Dog]

Violence has won out and we can see extreme putrid violence constantly in films and music.

Violence has also dictated editorial policy in newspapers, magazines and video due to threats from a certain religion of peace.

[Fabkiwi06]

It's an interesting choice. They've actually talked to me about the option of getting my tubes tied when I get my transplant. I've never planned on having kids anyway, but the finality of that choice weighs heavily.

[SutureSelf]

It's an interesting choice. They've actually talked to me about the option of getting my tubes tied when I get my transplant. I've never planned on having kids anyway, but the finality of that choice weighs heavily.

You're still quite young.  Things can change in your lifetime.  I hope you decide on leaving all options available.

[Simon Dog]

I married into my family when the kid was 4 (my wife and kid say that i was an acquisition).    I know from experience it is possible to have a perfectly normal family with all the love, arguments, stresses and fun times that families created the natural way enjoy or are cursed with as the case may be.   It's been a great ride so far, and I don't feel the slightest bit deprived not having spawned a biological offspring.

[Fabkiwi06]

It's an interesting choice. They've actually talked to me about the option of getting my tubes tied when I get my transplant. I've never planned on having kids anyway, but the finality of that choice weighs heavily.

You're still quite young.  Things can change in your lifetime.  I hope you decide on leaving all options available.

Oh, It was an easy decision to decide against it. It's far easier to just not get pregnant that it would be to try to reverse such a surgery down the line. I thought it was kinda interesting that they even offered.

[Charlie B53]

It's an interesting choice. They've actually talked to me about the option of getting my tubes tied when I get my transplant. I've never planned on having kids anyway, but the finality of that choice weighs heavily.

You're still quite young.  Things can change in your lifetime.  I hope you decide on leaving all options available.

Oh, It was an easy decision to decide against it. It's far easier to just not get pregnant that it would be to try to reverse such a surgery down the line. I thought it was kinda interesting that they even offered.

Even the best methods, fail, and pregnancy occurs.


All I can say is I wish you the best.  Be careful.


Humans have lived with genetic errors pretty much since the beginning.  It's a wonder that mankind has survived this long.  As a race we will continue to survive, nutate, somewhat, and continue.  Some will die earlier than others, there are no guarentees with anything.  All we can do is try to make the best of what we can, while we can.   Life is full of choices.  Who knows what ones at 'Right'?

[lainiepop]

Well i have a slightly different perspective, being a kidney patient since birth and then having kids myself! I do not have pkd just born with no bladder and one poorly functioning kidney, my parents were told i would die. No medical history in my family at all, the only 'issue' during the pregnancy being that at 35 and 37 they were considered very much older parents lol. I am an only child they tried for 14yrs to have me. Anyway, do i wish i hadn't been born?! Do i wish that when they found out in a scan about my abnormalities that they would have got rid of me?! Of course not. Sure i longed to be normal and not have hospital appointments but tbh i have been very lucky. That one poor kidney lasted 30 yrs and 2 kids. Never once was i discouraged from having children, even with my daughter when at 8 wks gone i was told i would need dialysis to sustain pregnancy. Well i never had dialysis and 11 months after her birth as most of u know my dad gave me his kidney. Hubby had the snip shortly after lol. Both my kids are happy healthy and smart. My daughter was born 5 weeks early 3lbs 10 but she came out of hospital after a week they said they have never seen one so little so healthy.

Basically healthy people have babies with abnormalities sometimes just as people like me have completely healthy babies. I echo what others have said, we never know when life can change and what it will throw at us. Sadly our 3 yr old niece has been battling leukeamia for 2 yrs now.

My cousin actually has Huntingtons. He wanted kids but his girlfriend didnt until they found out if he had it. He had initially refused testing wanted to live unaware. But he did it for her and the result contributed to their break up as he hadn't wanted to know but she was adament if he had it she did not want to have kids.

At the end of the day it is a personal choice i understand both sides. I wouldnt be without my 2, obviously, just the cutest (lil girl wants to be a ballerina lol poor brother has to humour her  )
 

[Charlie B53]

Sad that they broke up over the disagreement whether to test or not.  Perhaps they were not truely meant to be.  Agruements can be made many ways, for, and against.

Someone once said something about how differently most would be if they knew when they would die.  Perhaps the world would be a much better place if we all lived as if today was our last day.  How Thankful we would be to the people around us.   Then again, there are those that would literally do nothing, just sitting still and wasting what little time they had remaining.  The world is full of all kinds.

[lainiepop]

Not so much over whether to test or not but the result it tieldedm He obviously felt resentment because he hadnt wanted to know. But i completely understand her not wanting to have a child if he had it, and obviously if he hadnt had it then it would be a non issue. She felt by not knowing he would ultimately lkve as though he had it anyway so why not just know?! If that makes sense. Huntingtons is a different situation to kidney disease though i guess.

[jmintuck]

Like one of us said, needing a KIDNEY transplant is far preferable to life than a heart or liver or lung transplant. Any other organ needing replacement would be mega panic. Kidney, fortunately has dialysis available and you can at least have dialysis, often for YEARS before you begin to honestly need a kidney.