I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Des on August 11, 2009, 02:16:38 AM
-
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?
-
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
-
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.
-
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
-
Thanks again......
-
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.
-
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!!
-
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.
-
Paul.
This was such a nice reply!
Thanks... you have no idea how much it means to me.
-
Thanks to all my IHD family.
I know I feel much better now.... I think Twirl will as well.
-
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.
-
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.
-
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).
-
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 :twocents;
P&K
Ps. thx Des :-)
-
Here is my two cents.
It sucks with PKD in your life.
It sucks even worse when your kids have it!
-
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.
-
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.
-
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.
-
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!!
-
Just a little thought........if my parents didn't have kids because my dad had PKD......I wouldn't be here debating this question!
-
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.
-
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.
-
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 :cuddle;
-
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. :cuddle;
-
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.
-
:Kit n Stik; :Kit n Stik;First of all i don't regret having a only son that inherited PKD from me. But hindsight if i had knew that i had that carried that genetic malfunction i probably would not have fathered no kids. The real only way to stop PKD in familys is skip a generation or at least thats what i have read about it. What makes it worse for me is to know my son will have to deal with this one day and i am worried he will not be as old as me before he gets to the point of dialysis because he doesnt take care of himself.What really upsets me more than the disease itself is i am an adopted child and didnt have no medical history on biological family. But did have history that i had brothers and sisters and that always made me wonder if thats reason my biological family gave me up for adoption. I wish that adoption agencys would make it mandatory that biological family medical history be disclosed to the adoptive parents.
-
It really hasn't been that long that the medical field has learned as much as it has so far.
Many families have had a history of dying young, it just was. No one knew the causes as we now are learning.
My Father passed away at 59, after well over 20 years of heart problems. Sure his weight must have been a contributing factor to the onset of coronary disease, but he was always physically active though not of the sorts that would raise and maintain an elevated heart rate. He was strong. I am already 3 years older than he, and have been on PD all three of those years, so I consider myself very fortunate to still be here.
Family history MAY be a benefit, but we cannot rely on history alone to determine who we are and how we should live our lives. You can only do what YOU feel is best for YOU. And of course take care of our children as best we can, which is to teach them WELL. Teach them as early as possible to take care of themselves, how their habits can and willl contribute to their health.
Kidney friendly diet, proper physical exercise can make a huge difference in the quality of health and most likely length of lifetime.
Just my 2 cents.
Charlie B53
-
Family history MAY be a benefit, but we cannot rely on history alone to determine who we are and how we should live our lives.
There is a huge difference between having a kid when your family has a history of early heart disease, cancer, etc. and having one when you know there is a 50% chance of any offspring having a specific disease like PKD or Huntingtons.
That being said, I offer no opinion or judgement on parents making that choice.
Family history MAY be a benefit
There is no "may" when you are dealing with a 50/50 chance of inheriting the PKD or Huntington's gene. Family history is a very strong predictor, and an absolute predictor you are taking a very big risk.
-
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?
Hello Del,
My kidneys first failed in 1971 and afterwards they recovered a little of their function again without me needing any dialysis until 18 months ago ...
... Early on I was told by a Professor of medicine that it would not be advisable for me to have any children because he said that if people in kidney-failure have children, these children are either born with severe health-defects, or these children develop severe health-problems/defects later in life...
Having been warned about these terrible dangers at a very young age, I could never justify in my mind the idea of having any children and after thinking it over thoroughly, I have never ever allowed myself to entertain this idea ...
... and after discussing it with my husband - when we were getting serious about our future together - we both agreed and were contend with the idea of not to have children ...
... We both have not regretted our decision because over the years we have met too many kidney-patients with health-problem-children... and it hurt very much and was very painful to witness their suffering ...
... I must also mention that for me it was a very difficult and hard decision, because I really adore children and I get on with them extremely well ...
Best wishes from Kristina. :grouphug;
-
Family history MAY be a benefit, but we cannot rely on history alone to determine who we are and how we should live our lives.
There is a huge difference between having a kid when your family has a history of early heart disease, cancer, etc. and having one when you know there is a 50% chance of any offspring having a specific disease like PKD or Huntingtons.
That being said, I offer no opinion or judgement on parents making that choice.
Family history MAY be a benefit
There is no "may" when you are dealing with a 50/50 chance of inheriting the PKD or Huntington's gene. Family history is a very strong predictor, and an absolute predictor you are taking a very big risk.
I don't have an opinion on whether anyone should or shouldn't but I totally agree with Simon about the need for each person to be fully aware of what a 50% chance exactly means.
-
50% is half. For the sake of arguement say you have TWO children, one may be fine, the other may have the trait. But this is not always true. BOTH may have the trait. Then again, BOTH may be fine. We can never know in advance. Granted, we now have fetal testing, and some people do believe in abortion, so it is possible to NOT have the child with the trait. If you choose.
Then again, with the advances in medicine it MAY be possible to develop a lasting treatment before a child comes of age that the trait becomes a problem.
There is so much we do not know, yet.
These are the types of personal decision that each must make on their own, not subject to decision by committee.
Most every method for the prevention of conception has a failure rate. How do you handle these? This brings up that abortion debate, which I do not want to get involved in. That is another of those personal decisions, NOT subject to decision by committee.
Who are WE to dictate how another should live their life? As long as their life is not negatively affecting another being.
-
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?
Hello Del,
My kidneys first failed in 1971 and afterwards they recovered a little of their function again without me needing any dialysis until 18 months ago ...
... Early on I was told by a Professor of medicine that it would not be advisable for me to have any children because he said that if people in kidney-failure have children, these children are either born with severe health-defects, or these children develop severe health-problems/defects later in life...
Having been warned about these terrible dangers at a very young age, I could never justify in my mind the idea of having any children and after thinking it over thoroughly, I have never ever allowed myself to entertain this idea ...
... and after discussing it with my husband - when we were getting serious about our future together - we both agreed and were contend with the idea of not to have children ...
... We both have not regretted our decision because over the years we have met too many kidney-patients with health-problem-children... and it hurt very much and was very painful to witness their suffering ...
... I must also mention that for me it was a very difficult and hard decision, because I really adore children and I get on with them extremely well ...
Best wishes from Kristina. :grouphug;
P.S. This medical Professor pointed out to me that it is completely irrelevant whether or not the kidney-disease we suffer from (in my case: Chronic Proliferative Glomerulonephritis)
is inheritable or not... or whether it involves the male or the female who is suffering from a kidney-disease...
Why?
In his answer he pointed out, that our kidneys are extremely vital organs in our body and if they are "faulty" because of a kidney disease etc.,
this medical faultiness - as a result - "promotes" the fact that a child is to be depleted of vital "ingredients" from the very start after the "creation" ...
... and ... he also pointed out that because of this, there is unfortunately no "pretty" medical outcome at all ...
Kristina. :grouphug;
-
Like I said Charlie, I am not proferring an opinion on whether someone should or shouldn't have a child. All I am saying is that a 50% chance has to be clearly understood logically and rationally. When I was in my younger years, I thought little about stats and tended to have thought processes that were unrealistically optimistic. I was always going to be one of the lucky ones in all things under consideration. This is a common characteristic of younger people.
-
50% is half. For the sake of arguement say you have TWO children, one may be fine, the other may have the trait. But this is not always true. BOTH may have the trait. Then again, BOTH may be fine.
Holy binomial distribution batman.
Alternatively put, it you have two children you only have a 25% change of avoiding the PKD curse, and it drops to 12.5% or 1 in 8 for three kids.
Who are WE to dictate how another should live their life? As long as their life is not negatively affecting another being.
A credible argument can be made that having a kid with PKD is negatively affecting that being.
Something to think about - if everyone with the PKD gene stopped reproducing, the disease would be nearly wiped out in a generation.
If I had PKD, I would sooner send my wife to an IVF or donor clinic than impregnate her. My kid (came with the marriage) is a donor kid, and that has not interfered with my family relationships at all. In fact, the fact that she was "bred" (vial selected from a catalog) may be why she turned out smart enough to be able to invite me to her Harvard graduation earlier this week. I do not feel in the slightest bit deprived or less fulfilled because my family came from a non-traditional mechanism.
-
Like I said Charlie, I am not proferring an opinion on whether someone should or shouldn't have a child. All I am saying is that a 50% chance has to be clearly understood logically and rationally.
... The tragedy about having or not having children despite a chronic incurable kidney-disease is unfortunately not connected to logic and/or rational thinking ...
... but this decision is predominantly connected to feelings & emotions and the often hopeless hope that the child would be healthy despite gloomy medical predictions ...
Kristina. :grouphug;
-
.
My kid (came with the marriage) is a donor kid, and that has not interfered with my family relationships at all. In fact, the fact that she was "bred" (vial selected from a catalog) may be why she turned out smart enough to be able to invite me to her Harvard graduation earlier this week. I do not feel in the slightest bit deprived or less fulfilled because my family came from a non-traditional mechanism.
... Does that not indicate a frightening development of "human selection" ?
-
... Does that not indicate a frightening development of "human selection" ?
Perhaps, but that is the nature of sperm banking. The buyer gets the medical and intellectual history of the donor.
An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.
Interesting ethical questions. Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.? Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity? What about selecting sperm to match the race of the recipient?
As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.
For those with PKD the choice is tri-state, not binary. It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.
-
P.S. This medical Professor pointed out to me that it is completely irrelevant whether or not the kidney-disease we suffer from (in my case: Chronic Proliferative Glomerulonephritis)
is inheritable or not... or whether it involves the male or the female who is suffering from a kidney-disease...
Why?
In his answer he pointed out, that our kidneys are extremely vital organs in our body and if they are "faulty" because of a kidney disease etc.,
this medical faultiness - as a result - "promotes" the fact that a child is to be depleted of vital "ingredients" from the very start after the "creation" ...
... and ... he also pointed out that because of this, there is unfortunately no "pretty" medical outcome at all ...
Kristina. :grouphug;
I question this statement, for the simple fact that there have been many kidney patients who have been able to father/carry in pregnancy babies that come out to be healthy children and on up to healthy adults. Blanket statements are just that - blanket statements. Nothing is all true in any situation when it comes to health.
KarenInWA
-
Even using a sperm bank there is no guarantee of perfect health. Granted there may be a certain % of the likelyhood of better health, but there cannot be a guarantee of no recessive gene hiding within.
Arguements can be made both for and against 'selective' breeding. All I can say is that is another of those personal decisions, NOT subject to selection be committee. It would be a very different world if the Government had a section that decised exactly who gets impregnated by whom. Perhaps if some were selected to live for generations aboard a spacecraft. Taking many generations before arriving at any given destination. It could be a very interesting experiment. But I doubt it would ever happen here on Earth. Too many variables. People are not always rational, especially when it comes to selecting members of the opposite sex. We 'fall' in love. We do not use our brain. At least I'm pretty sure that I didn't!
-
Simon Dog, what an interesting perspective you provide. Thank you. I find myself agreeing with you 100% percent. Having observed a couple who have 2 children who are born with various kind of congenital abnormalities and disorders and having watched the mother of those children fall deeply into depressive illness, I wouldn't wish that on anyone.
Do you have Huntington's as well as PKD?
(I can't help asking - why isn't there much demand for redheads?)
-
(I can't help asking - why isn't there much demand for redheads?)
I agree. I used to have auburnish hair (it's now drab brown/grey as I age) and I always wanted to be a real red head. I even used eyebrow pencil as a kid to pencil on freckles (more than I already had). So it seems strange to me that they are discriminated against. Does red headedness come with some payload of other problems? Or is it merely an aesthetic issue? I know it's a recessive trait. I come from a Russian Jewish background and my whole family except for me has/had black hair. And there I was as a strawberry blond kid later darkening to red-ish. I learned that there is a "thing" that happens in that ethnic group where black-haired men can have red beards and there is the occasional red headed child. Genes are funny that way.
-
(I can't help asking - why isn't there much demand for redheads?)
I agree. I used to have auburnish hair (it's now drab brown/grey as I age) and I always wanted to be a real red head. I even used eyebrow pencil as a kid to pencil on freckles (more than I already had). So it seems strange to me that they are discriminated against. Does red headedness come with some payload of other problems? Or is it merely an aesthetic issue? I know it's a recessive trait. I come from a Russian Jewish background and my whole family except for me has/had black hair. And there I was as a strawberry blond kid later darkening to red-ish. I learned that there is a "thing" that happens in that ethnic group where black-haired men can have red beards and there is the occasional red headed child. Genes are funny that way.
While this is an excellent archival topic to retrieve from 2009, comments, such as this for example, have strayed a great deal from the original discussion started by Des. Please, either stay on topic to her thoughtful issue or if you wish to continue off topic, start a new thread under the appropriate discussion topic. Thank you. ~ SutureSelf
-
I don't think I have PKD I think a list of staph infections I had as a child is the probable cause of me having ESRD. Scarlet Fever, impatago, repeated strep throats. The only way I can look at this question is would I rather not have been born because I go to dialysis. Hell no, I had a job I loved for 45 years, really enjoyed my self, married at 42, looking back life was a hoot. Besides if dialysis was such a burden I would stop going. If my life was unbearable I would just stop going to dialysis. However while dialysis sucks rocks there is still much to live for. If I had a kid and he was going to end up on dialysis I would recommend living every day doing what you love.
-
... Does that not indicate a frightening development of "human selection" ?
Perhaps, but that is the nature of sperm banking. The buyer gets the medical and intellectual history of the donor.
An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.
Interesting ethical questions. Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.? Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity? What about selecting sperm to match the race of the recipient?
As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.
For those with PKD the choice is tri-state, not binary. It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.
Hello Simon,
...The reason for my above comment is based on historical events, where a frightening, terrifying development of "human selection" took place, based on the idea of "Lebensborn e.V." (literally: "Fount of Life") which was an SS-initiated, state-supported, registered association with the goal of raising the birth rate of very healthy & clever children of persons classified as "racially pure, very healthy and clever", all based on Nazi racial hygiene and Nazi health ideology ... "Fount of Life" encouraged anonymous births by unmarried healthy women and mediated adoption of these children from 1935 - 1945 and about 60% of the mothers were unmarried and they were all medically checked-up and medically "cleared", before being "selected" to "multiplie", as Geoffrey Chaucer would have put it ...
Kristina.
-
P.S. This medical Professor pointed out to me that it is completely irrelevant whether or not the kidney-disease we suffer from (in my case: Chronic Proliferative Glomerulonephritis)
is inheritable or not... or whether it involves the male or the female who is suffering from a kidney-disease...
Why?
In his answer he pointed out, that our kidneys are extremely vital organs in our body and if they are "faulty" because of a kidney disease etc.,
this medical faultiness - as a result - "promotes" the fact that a child is to be depleted of vital "ingredients" from the very start after the "creation" ...
... and ... he also pointed out that because of this, there is unfortunately no "pretty" medical outcome at all ...
Kristina. :grouphug;
I question this statement, for the simple fact that there have been many kidney patients who have been able to father/carry in pregnancy babies that come out to be healthy children and on up to healthy adults. Blanket statements are just that - blanket statements. Nothing is all true in any situation when it comes to health.
KarenInWA
Hello KarenInWa,
... I know myself how the truth can be hurtful ... sometimes ... :grouphug;
... at the same time it could be that you are right ... after all ...
... I only mentioned here my very own - and very personal - reasoning,
why I never had the nerve to take on such an enormous gamble and have a child
despite "my" incurable kidney disease (Chronic Proliferative Glomerulonephritis)
and to find out "practically" whether this Professor is right ... or not ...
... I know myself well enough to know, that if I would have had a sick and disabled child
as a result of taking "the gamble", I would have never ever been able to forgive myself ...
Kristina.
-
... Does that not indicate a frightening development of "human selection" ?
Perhaps, but that is the nature of sperm banking. The buyer gets the medical and intellectual history of the donor.
An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.
Interesting ethical questions. Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.? Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity? What about selecting sperm to match the race of the recipient?
As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.
For those with PKD the choice is tri-state, not binary. It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.
Hello Simon,
...The reason for my above comment is based on historical events, where a frightening, terrifying development of "human selection" took place, based on the idea of "Lebensborn e.V." (literally: "Fount of Life") which was an SS-initiated, state-supported, registered association with the goal of raising the birth rate of very healthy & clever children of persons classified as "racially pure, very healthy and clever", all based on Nazi racial hygiene and Nazi health ideology ... "Fount of Life" encouraged anonymous births by unmarried healthy women and mediated adoption of these children from 1935 - 1945 and about 60% of the mothers were unmarried and they were all medically checked-up and medically "cleared", before being "selected" to "multiplie", as Geoffrey Chaucer would have put it ...
Kristina.
Kristina, I don't think it is fair to lump the enormity of the abuses of the Nazi regime on someone who is trying their best to find a solution within existing ethical and lawful medical practices. The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time). Bringing everything back to what the Nazis once did generally isn't very helpful.
-
The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time).
Oh là là Athena ! You are making quite a statement here !
But ... I am afraid I cannot agree with you on that ...
Kristina.
-
... Does that not indicate a frightening development of "human selection" ?
Perhaps, but that is the nature of sperm banking. The buyer gets the medical and intellectual history of the donor.
An interesting eugenic example of what happens with sperm nbanking is redheads - some banks do not buy sperm from redheaded donors since there is little demand for that product.
Interesting ethical questions. Few, if any, would argue that it is reasonable for sperm buyers to reject product like sperm that bears a 50% change of Huntingtons (makes PKD look like a common cold), but what about selecting for intelligence; height; hair color; etc.? Should a buyer be obligated to select sperm from a population not screened for intelligence, just to give stupid sperm equal opportunity? What about selecting sperm to match the race of the recipient?
As to "evils" - I rank birthing a kid with PKD or Huntingtons as more evil that selecting sperm out of a catalog to get a smart, healthy kid.
For those with PKD the choice is tri-state, not binary. It's don't have kids; have kids the natural way; or find some alternative way to build a family dynasty.
Hello Simon,
...The reason for my above comment is based on historical events, where a frightening, terrifying development of "human selection" took place, based on the idea of "Lebensborn e.V." (literally: "Fount of Life") which was an SS-initiated, state-supported, registered association with the goal of raising the birth rate of very healthy & clever children of persons classified as "racially pure, very healthy and clever", all based on Nazi racial hygiene and Nazi health ideology ... "Fount of Life" encouraged anonymous births by unmarried healthy women and mediated adoption of these children from 1935 - 1945 and about 60% of the mothers were unmarried and they were all medically checked-up and medically "cleared", before being "selected" to "multiplie", as Geoffrey Chaucer would have put it ...
Kristina.
Kristina, I don't think it is fair to lump the enormity of the abuses of the Nazi regime on someone who is trying their best to find a solution within existing ethical and lawful medical practices. The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time). Bringing everything back to what the Nazis once did generally isn't very helpful.
Oh là là Athena ! You are making quite a statement here !
But ... I am afraid I cannot agree with you on that ...
Kristina.
-
Kristina, I don't think it is fair to lump the enormity of the abuses of the Nazi regime on someone who is trying their best to find a solution within existing ethical and lawful medical practices. The uncomfortable truth is that the Nazi regime actually made some new medical discoveries which have benefited mankind greatly since then (this is something one hears from time to time). Bringing everything back to what the Nazis once did generally isn't very helpful.
There is an interesting paper on this very subject at http://www.jewishvirtuallibrary.org/jsource/Judaism/naziexp.html.
I am reminded of the time the Tufts Vet School got approval from their IRB to do an experiment where they broke two legs on healthy dogs, and then used different repair techniques on each for the sake of comparison. That one still bothers me. Dogs deserve better.
-
Unfortunately the medical field has a long history of animal abuse all in the name of 'Science'. I have to agree, the practice is barbaric.And it is still being done today behind closed doors as the pblic would raise quite a stir if/when they became aware of some of the testing being done.
There are many laws preventing much of these types of tests on humans. Bizarre, as a human may understand some of the risks yet be willing to subject oneself to them for a price. The animals are never given a choice.
Unfortunately we are slow to develop better methods of testing.
-
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.
-
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.
-
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.
-
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.
-
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 :flower;
-
I agree. extremely lucky.
And I really hope that me saying all that didnt upset anyone who cant or doesnt have a child :(
-
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.
-
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.
-
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.
-
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.
-
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.
-
... 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 :twocents;
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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'?
-
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 :rofl;)
-
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.
-
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.
-
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.