Youngest kidney dialysis girl's transplant after seven years

[okarol]

Youngest kidney dialysis girl's transplant after seven years

Exclusive by Martyn Halle And Adrian Butler 20/04/2008

A brave little girl born without any kidneys is celebrating after finally being given a life-saving transplant.

Doctors risked giving seven-year-old Alice Skinner an imperfectly-matched kidney because they were running out of options. Now, two weeks later, the operation has been hailed a success.

Alice, who has been on a strictly controlled diet all her life, has even got hooked on Coca-Cola... doctors say it helps to get her kidneys working.

Her dad George, from Hartlepool, Teesside, said: "We're so relieved she can now lead a normal life."

Alice, whose condition affects just one baby in amillion, was Britain's youngest dialysis patient at six months. Both parents were unsuitable as donors and she spent years on thrice-weekly dialysis waiting for a transplant. Doctors were running out of veins to hook her up to the machine.

Mr Skinner said: "Her options were fading.

"They were talking about tapping straight into her heart for dialysis, which can be dangerous."

Doctors at Newcastle's Royal Victoria Infirmary decided to try an imperfect match instead - the transplant operation was the last of 16 to prepare her body for the new kidney.

"Alice has made up for lost time doing normal things like drinking Coke, eating chocolate and opening bags of crisps," said mum Nicola, 37. "We'll cut back once she's home, but for the moment we're just allowing her to be a normal little girl."

Now Alice can't wait to tuck into her first bag of chips and other foods that were banned.

Hours spent on dialysis with nothing to do but read have left Alice four years ahead in school with a reading age of 11.

Mr Skinner said: "She's dying to go to school every day of the week with her mates now.

"Right from birth it was a fight to keep to keep her alive. We were told she wouldn't get past the first weekend after she was born."

http://www.sundaymirror.co.uk/news/sunday/2008/04/20/youngest-kidney-dialysis-girl-s-transplant-after-seven-years-98487-20388188/

PHOTO Alice Skinner

[stauffenberg]

This poor girl has no chance of a decent life, and yet probably most non-renal patients reading this report will assume it is a "happily-ever-after" story.  Being exposed to the toxic effects of immunosuppressives while she is growing, suffering all the debilities of having been so long on dialysis at such a formative period of her life, and already at her young age starting to use up the limited time her transplant(s) can survive, are all factors which will severely limit her health, functioning, and life expectancy.

[petey]

This poor girl has no chance of a decent life, and yet probably most non-renal patients reading this report will assume it is a "happily-ever-after" story. Being exposed to the toxic effects of immunosuppressives while she is growing, suffering all the debilities of having been so long on dialysis at such a formative period of her life, and already at her young age starting to use up the limited time her transplant(s) can survive, are all factors which will severely limit her health, functioning, and life expectancy.

But, stauffenberg, this child is alive -- and there's something to be said for that.  I would imagine that that fact alone brings great joy to her parents.  While I don't think it's a "happily-ever-after" story completely, at least her story has an "after" right now.  Is it going to be a tough life for her?  You better believe it.  Is her life going to be an uphill battle?  Yep, sure is.  But, in her case and in the cases of so many others, it's still a life.

[stauffenberg]

The worst mistake people make is to assume that life in any form is always preferable to death.

[okarol]

I know of patients who were faced with similar experiences as children and young adults, and they are not only functioning well but they are also enthusiastically advocating for other patients who are struggling.

[petey]

The worst mistake people make is to assume that life in any form is always preferable to death.

Then, count me as one who makes this "worst mistake."  As long as my mind is in working order, I want life -- any kind of life, with any restrictions, any limitations, or any definitive time left in it.  To me, some life would be better than none at all.  And, if my mind isn't right, then I really wouldn't know, now would I?

[willieandwinnie]

stauffenberg, This is your own introduction. Maybe you should re-read it.

Before I developed renal failure, I was living a hyperactive life as a university professor at two separate universities, one in England and one in Germany.  Suddenly, however, I was struck down by Wegener's Vasculitis, an extremely rare autoimmune disease which transformed me from a healthy, young-llooking man in his forties to a feeble renal paitient in the span of just two weeks.  I spent eight years on dialysis, during which I was unable to work and endured a kind of living death, during which my existence was plagued with hypersomnia, constant nausea and vomiting, itching, difficulty concentrating, and exhaustion -- despite my rigid adherence to the renal diet and 15 hours of hemodialysis a week.  Eventually I got a transplant, and the effect was immediate and remarkable, since I felt truly awake for the first time in years just minutes after coming out of the recovery room following the operation.  In the year since then, I have been able to return to work and feel about 80% as healthy as I did before renal failure.  The main limitations I experience are from clouding of the vision due to cataracts forming in response to the prednisone dose; tiredness from persistent low hemoglobin levels; and severe, month-long illness when I get the winter flu.  Still, I feel incomparably more healthy than I did on dialysis, and now realize that I was unable to perceive during dialysis exactly how far I had dropped below the level of normal living.

This child deserves the same things you felt. She has an uphill battle but the younger ones seem to tolerate the situation better.

[Bajanne]

I am very happy for her and her parents. 

[stauffenberg]

Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world.  She would be better off dying right now than going through all the medical crises I had to go through.  Unfortunately, her prognosis is even worse than mine was, given her early exposure to the toxic immunosuppressive regimen as well as all the existing damage to nerve, brain, and skeletal development from being on dialysis for so long and so early.

[mariannas]

I don't know if you read my introduction, but I was born with very minimal kidney function.  I got a transplant when I was three (I don't even remember it happening) and now I am 26.  I did lead a "normal" life - normal to me that is.  I've been on immunosuppressants since I was 3, but to me it's normal.  Taking my meds is not a chore, it's just life - a life I am extremely grateful to be living.  The only limitations I had growing up were that I couldn't play contact sports!  BIG WHOOP!  My transplant lasted about 23 years and I do have some kidney function left even if it's not much so it is technically still working. 

This girl CAN lead a normal life.  I am living proof of that.

[petey]

Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world. She would be better off dying right now than going through all the medical crises I had to go through.

Oh, goodness, stauffenberg -- this sounds horrible to me!  I could never agree with this statement.

In the past 13 years, my Marvin has been through one medical crisis after another -- years of dialysis, a transplant, years of dialysis again, surgeries (42 in all), 21 accesses for dialysis, PD treatments, in-center hemo treatments, home hemo treatments, two pacemakers (first one failed after a month), major health set-backs, loss of his job and career (and income), etc.  All of this is attributed to his ESRD.

But, also in the past 13 years, he's seen eight of his nieces and nephews become parents and he's held those eight new great-nieces and great-nephews in his arms.  He's been to weddings and welcomed new people into his family.  He's laughed a lot.  He's volunteered in our community as a youth baseball coach and taught thousands of young boys and girls (ages 6-12) how to play and how to love the game of baseball.  He's served as an unofficial advocate for dialysis and helped many people come to terms with their own ESRD and their own on-set of dialysis.  He's met thousands of people in the last 13 years and made many new friends.  He's served as an excellent example of determination, perseverance, and the will to live despite adversity.  He's contributed to society.  He's been productive and happy for the last 13 years, too.  He's seen many beautiful sunrises and just as many beautiful sunsets.  In the past 13 years, he has LIVED a good life.

I think it's all in a person's attitude.  If you think life with ESRD and dialysis and transplantation is "the end" of your life, it will be, and the disease will conquer you.  However, if you see ESRD, dialysis, and transplantation as something you have to LIVE through and you can still maintain a "good" life despite it and its complications, you will be the victor.  My hope is that this child -- just like Marvin -- will fall into the latter category.  How miserable life must be for those who fall in the first category!

[MyssAnne]

Oh, I hope she makes it. I hope she has a wonderful childhood, with many precious and happy memories.

She looks so happy, sitting on the slide. 

[mariannas]

I think it's all in a person's attitude.  If you think life with ESRD and dialysis and transplantation is "the end" of your life, it will be, and the disease will conquer you.  However, if you see ESRD, dialysis, and transplantation as something you have to LIVE through and you can still maintain a "good" life despite it and its complications, you will be the victor.  My hope is that this child -- just like Marvin -- will fall into the latter category.  How miserable life must be for those who fall in the first category!

Petey, these are such wise words.  I completely agree with you.  Having lived with kidney failure my entire life, dialysis was just another treatment in a long - yes, sometimes tedious - journey.  To me it is no different than the medications that I have to take everyday.  Yep, it's true that I have to do these things to survive, but I have a happy life and I'll be damned if I am going to give that up.  2007 was a very hard year for me and there were times when I thought I *was* going to die, but you know what?  I lived through it and now I know just how strong I am.  Kidney failure sucks...there's no question about that, BUT I'd rather be where I am right now than be dead. 

[monrein]

And I just think we are all different.  The main point it seems to me is that none of us can ever truly know what it FEELS like to live in the skin of another person, even if that person has had so called "identical" experiences.  We will never have identical experiences because we are not identical nor will we have identical reactions.  Some people have always clung to life and hope through incredible adversity, disability etc while others have killed themselves over what may appear to others to be a mere trifle.  The only person's life whose quality we can really judge is our own and even then sometimes it is easy to lose perspective.  It is for me to judge whether I feel lucky to be alive as it is for this little girl to decide for herself if she should have died at birth.  For me personally,  I'm still glad I'm in the world although for sure there are and have been times when death didn't seem so bad.  Long live hope.

[Brightsky69]

Wow..no doubt this child will have a rough road ahead. This little girl is here for a reason and she sure looks happy in the picture. I am sure her parents are grateful to still have her. I think she will have a decent life. It may not be perfect (no one's life is) but it will be her life and she deserves to have it anyway she can get it.
 I always use to tell people that when your faced with death...life becomes so much more sweeter. You tend to appreciate everything so much more. At least that is how I like to look at it.

[george]

Hi i,m Alice,s dad thanks for all the positive comments, those who have negatve one,s shud look at there own live,s and make more of it ?.
alice has spent many a year on dialyis and never once complained, she has had diaylis since she was 4 days old  and 19 operations to prepare her for transplant, of course she has missed time spending time with her peers , but this is a child who know,s no difference, her life to her is normal, we just hope now she can spend time playing with her friends, eating , swimming, having baths, drinking fluids and most of all living her life

[monrein]

Nice to see you here George.  You have a beautiful little girl.  All the best to your family and long live Alice and her new kidney.

[george]

tyvm morein alice,s kidney is doin fine , she is running round with her freinds as if nothing has happened and is going back to school on monday, great i need a break lol , not really thx

[lola]

This poor girl has no chance of a decent life, and yet probably most non-renal patients reading this report will assume it is a "happily-ever-after" story.  Being exposed to the toxic effects of immunosuppressives while she is growing, suffering all the debilities of having been so long on dialysis at such a formative period of her life, and already at her young age starting to use up the limited time her transplant(s) can survive, are all factors which will severely limit her health, functioning, and life expectancy.

My husbands brother's where young when they got there 1st kidney's and had them for over 20 years(both of them)!!!! Enjoy life they did and still do both with there 2nd gift's of life.

[lola]

Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world.  She would be better off dying right now than going through all the medical crises I had to go through.  Unfortunately, her prognosis is even worse than mine was, given her early exposure to the toxic immunosuppressive regimen as well as all the existing damage to nerve, brain, and skeletal development from being on dialysis for so long and so early.

you need a BIG if you really feel that way about a child's life.

[lola]

tyvm morein alice,s kidney is doin fine , she is running round with her freinds as if nothing has happened and is going back to school on monday, great i need a break lol , not really thx

So happy for your family. Hope she has a AWSOME day back at school

[okarol]

tyvm morein alice,s kidney is doin fine , she is running round with her freinds as if nothing has happened and is going back to school on monday, great i need a break lol , not really thx

So happy for your family. Hope she has a AWSOME day back at school

Great to hear she's doing well! 

[petey]

george -- I'm sending love and wishes for a happy life to your little Alice!  She's precious!

[willieandwinnie]

george  . Alice is beautiful and I'll pray her kidney last a lifetime. Good wishes for your entire family and we'd love to hear updates about how she is doing. 

[Psim]

The only person's life whose quality we can really judge is our own and even then sometimes it is easy to lose perspective. <snip>  Long live hope.

You are a wise woman, Monrein.