My girl, 18, has kidney disease too

[okarol]

My girl, 18, has kidney disease too

By Mark Lavery
23 February 2008

A MUM who donated a kidney to her husband has now found out her teenage daughter has the same life-threatening condition.

Three years ago Carol Norbury, 47, of Pontefract, gave husband John, 51, a new lease of life after undergoing an operation at St James's Hospital, Leeds, to give him one of her kidneys.

Now the couple's 18-year-old daughter, Jessica, has discovered she is suffering from the same hereditary kidney disease that blighted her father's life.

Carol has pledged to raise £1,500 for charity Kidney Research UK by running the London Marathon on Sunday, April 13 to fund research into polycystic kidney disease (PKD).

Carol said: "I want to raise money to boost research into finding a cure so Jessica can avoid a transplant and all the trauma that goes with it.

"John's mum died from PKD when she was 47, but we didn't know it was hereditary. It was a shock to find out John had it and worse to know it had been passed on to Jessica. It won't be a problem u
ntil she is 30 or 40 and that seems too far away now for her to worry."

John, who works in the building trade, said: "What Carol did for me has completely changed my life. I can play five-a-side football and have a pint again. I was ill for about 10 years.

"Before the transplant I was always tired and got out of breath easily. It got to the stage of renal failure and I was about to go on dialysis when I had the transplant.I'm amazed Carol is doing the marathon. All the family are so proud of her."

Shortage

He added: "It would help the donor shortage situation if the system was changed, if it was assumed people agree to donate their organs after they have died unless they have said otherwise."

l To sponsor Carol in the London Marathon, visit www.justgiving.com/carolnorbury.

l To view a fundraising video Carol has made, go to YouTube and type "Pretty Bettys Marathon".

http://www.yorkshireeveningpost.co.uk/news/My-girl-18-has-kidney.3809264.jp

[stauffenberg]

I have no sympathy for this family at all, since it should be regarded by society as a criminal act to have children if you know you are carrrying a gene for a serious hereditary illness.  Just for your own pleasure at having children of your own, you should not be able to bring other people into a life of horror.

[rose1999]

That's a bit harsh! Perhaps they didn't know they carried the gene when they had children, from what they say they didn't know it was hereditary..  My husband died from prostate cancer and it is likely to be hereditary, but until he was diagnosed (our boys were 11 and 13 then) we had no idea that he had it.  Unless there is genetic testing available to all prospective parents you can't blame people for having children when they don't know they carry a disease, and even then surely you have to have some sympathy for the children.

[lola]

I have no sympathy for this family at all, since it should be regarded by society as a criminal act to have children if you know you are carrrying a gene for a serious hereditary illness.  Just for your own pleasure at having children of your own, you should not be able to bring other people into a life of horror.

WOW that's REALLY harsh

[xtrememoosetrax]

That's a bit harsh! Perhaps they didn't know they carried the gene when they had children, from what they say they didn't know it was hereditary.. My husband died from prostate cancer and it is likely to be hereditary, but until he was diagnosed (our boys were 11 and 13 then) we had no idea that he had it. Unless there is genetic testing available to all prospective parents you can't blame people for having children when they don't know they carry a disease, and even then surely you have to have some sympathy for the children.

Well said, Rose.

[Meinuk]

Stauffenberg, you've been chewing on too many bitterness pills.  I for one am glad that I was born.  Was it genetically irresponsible for my mother to have me.  Yes.  But I think that my being in this world had been a positive for society  - my genetic disease and all.

So, I understand that you are having a miserable time with kidney disease and all of the co-morbidities that come with it, but that is just your experience.  Proposing legislation on reproduction based on genetic makeup is not protecting society, it is just bitterness/misery lashing out.

This is life.  Health and sickness will always exist - deal with it.  The diversity of the gene pool is an amazing thing.  Darwin was really on to something, nature will always adapt and we are living/surviving testaments to that.

[okarol]

My dad died of a cerebral hemorrhage at 28 years old, having fathered 4 children. The cause was high blood pressure from PKD (although my mom just called it "bad kidneys.") That was in 1962, but we didn't learn it was hereditary until a comment made by a nurse to my older sister caused her to ask questions. That was 1985.
As the article states "John's mum died from PKD when she was 47, but we didn't know it was hereditary. It was a shock to find out John had it and worse to know it had been passed on to Jessica." I believe that is quite possible.
How far do you go with genetic testing? What if you knew you could pass on alcoholism or obesity? Or what if you knew your child might have ADD, or diabetes, or mental illness? Some families would be devastated by these things, but does that mean we weed out the imperfections in our genes?

[Sluff]

stauffenberg, you've been chewing in too many bitterness pills.  I for one am glad that I was born.  Was it genetically irresponsible for my mother to have me.  Yes.  But I think that my being in this world had been a positive for society  - my genetic disease and all.

So, I understand that you are having a miserable time with kidney disease and all of the co-morbidities that come with it, but that is just your experience.  Proposing legislation on reproduction based on genetic makeup is not protecting society, it is just bitterness/misery lashing out.

This is life.  Health and sickness will always exist - deal with it.  The diversity of the gene pool is an amazing thing.  Darwin was really on to something, nature will always adapt and we are living/surviving testaments to that.

And we are sure glad your parents did too. Hell I'd never made it to the chapel otherwise.

Stauffenbergs post does seem a little harsh but I always like to read his viewpoints.

[paris]

It wouldn't be an interesting conversation if Stauffenberg didn't give us his point of view!    That is the best thing about IHD.   That being said; 3 of my husband's siblings have had cancer, his mother, two aunts, grandmother.  OSU is now doing genetic research to see if there is a hereditary factor. In the meantime, we have 4 children. I do hope they don't blame us for their bad genes. No one in the family had cancer when we were having babies.  My father was an alcoholic, brother and two nephews had addiction problems---my poor kids!   Not great odds for them. 

Made it to the chapel via the scenic route!!

[Meinuk]

I'm with you Paris & Sluff (& Stauffenberg) - I do love reading all points of view - that a part of what makes IHD such an obsession for me.

And, I'll never forget that whole night - what a ride....  Pretty much a prefect evening as far as I am concerned, and I am so happy that we had it together.

(for those of you reading along, we were given bad directions to the Restaurant on the night of Sluff's wedding, so we saw parts of Las Vegas that aren't in the guide books.  Eventually, we made it to the Restaurant and met up with all of the other IHDer's and from the restaurant, I drove Sluff & his Bride to the Hotel to meet Elvis, who then drove them to The Chapel to get married.)

[kidney4traci]

How far do you go with genetic testing? What if you knew you could pass on alcoholism or obesity? Or what if you knew your child might have ADD, or diabetes, or mental illness? Some families would be devastated by these things, but does that mean we weed out the imperfections in our genes?

My father had Alports, but he fell in love with my Mom and before they planned it, there I was.  I wouldn't trade my life for anything.  You cannot put a price on the value of one life over another.  I was told I couldn't have kids, so when I was pregnant I was thrilled.  But also scared about passing this on to her.  But there is a 50/50 chance they will or won't.  So you going to arrest me?  You can't say my life on dialysis is hell.  Who are you to judge me?  My life is very blessed.  The couple hours I spend on dialysis gets me cleaned out, I feel completely normal, I am contributing to society by working still and raising a family.  My kids are being trained to know what signs to look for and to be tested every year.  I pray that are not effected, but don't know yet.

 I went to the link Karol, I agree that there wouldn't be such a dialysis crisis if everyone would truly consider donating their organs to transplant.  Then I wouldn't even need to do dialysis. 

[xtrememoosetrax]

Stauffenbergs post does seem a little harsh but I always like to read his viewpoints.

Good point. Me too!

[stauffenberg]

Obviously my point applies only to people who know already that they will be passing on a high risk of a serious disease before they have children.  While some people may find life tolerable on balance despite having serious and incurable illness, it is arrogant and heartless for potential parents to make that presumption for their future children without being able first to get the consent of those children to that horrible risk.  Parents have an enormous duty toward their children, even when the children are still unborn, as we see generally recognized today in society's moral censure of mothers who smoke and drink and don't take folic acid when they are pregnant.  It is inconsistent with this huge moral responsibility toward future children to expose them to life with a high risk of a disease so terrible they may well prefer never to have been born.  Given that all humans have a profoundly strong, instinctive, utterly irrational desire to continue living even when life is utter torture, usually because they are too frightened by the process of suicide to use that obvious method to escape from a life which is nothing more than a punishment, parents who expose their future children to a high risk of serious disease may be trapping them in a horror from which they will not be able to escape. What greater form of child abuse can there be?

And yet what stuns me is that society not only allows parents to commit this abuse, but even regards it as acceptable.  This arises from a confusion between what is ordinary and natural on the one hand and what is morally acceptable on the other, when the two are in fact often very different.  It also arises from society's fear of admitting how horrible things really are in some aspects of life, and those who profit by everyone's sheep-like acceptance of the way things are would never want to admit that disease can be as bad and untreatable as everyone on this message board knows it can be. 

[Meinuk]

My point is that society should stress education not legislation.

Passing on defective genes will happen.  And as long as we live in a society that can sustain sub optimal life, unhealthy children will be born. Child Abuse?  I can't picture calling ACS because a woman gave birth to a child with spina bifida.  What world is that?  I don't want to live in it.  I want society to learn and grow from interactions with those that we encounter on life's pathway.  I am sorry if someone feels as though they wish that they were never born, but if I've ever encountered them, then I am glad that they were born and stuck around long enough for me to know them. 

Sick, healthy or anywhere in between.  Selfish, maybe, arrogant definitely but that is human nature.  Pain and suffering exists, I never want to live in a society that attempts to breed the perfect human.  I love our imperfections.

Now to make this personal (even though it already was)  My conception was an accident.  Back in the 60's my mother didn't know that the antibiotics that she was taking for her kidney infection would counteract her birth control pills.  She chose to give birth and not abort.  (let it be said that politically, I am pro abortion, just not in MY case)

When I was young and fanciful, I met a boy and fell in love - we had the whole package or so we thought.  But when we started planning a future together - I would never bear his children and chances were that we would not grow old together.  We broke it off.  So, you see, I am a walking talking (typing) example of Darwin's Theory in practice - I am out of the breeding pool.  It was an informed decision on my part.  Some days, when I am feeling particularly alone, it feels like a bitter sacrifice, other days I reckon it to sucking it up and just ripping off the band aid - I'll fall in love again, and I'm lucky that my friends allow me to share their children, so I know that I have influenced future generations.  (how's that for arrogance?)

There is too much pain and misery in this world, we see it, and we feel it - but that is what makes us human.   Pain and misery will exist in one form or another for as long as the human race exists.

[Mimi]

Straight talk, Meinuk.  I'm with you.
Love, Mimi

[Wattle]

What greater form of child abuse can there be?

Having you Stuffenberg as a parent.    

You are very quick to judge others actions. You must be very happy in your own skin to be so harsh towards others.

[Lori1851]

Stuffenburg,
I am glad I have my son. I am very blessed. To say one shouldnt have children no one is to say. Even if it was hereditary doesnt mean every child would be afflicted. As for my son he is still HAPPY he was born
Lori/Indiana