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hello from the uk
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Topic: hello from the uk (Read 3079 times)
koutsounel
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hello from the uk
«
on:
July 08, 2009, 08:50:25 AM »
hi all,
I have a baby born with congenital nephrotic syndrome. During pregnancy everything was fine, and when he was born everything seemed ok. When he was two months old he presented generilised odema and was taken to a renal unit, where he was diagnosed. He had nephrectomies over a year ago, he has been at home on PD, and has just gone on call....
I have been reading your stories for quite some time now, and have learned lots of interesting things. This is a great community, and we need to support eachother as many people do not fully understand what we are going through.
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And no resident will say: “I am sick.”
Isaiah 33:24
paul.karen
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Re: hello from the uk
«
Reply #1 on:
July 08, 2009, 09:23:47 AM »
K
Welcome to IHD.
I am sorry your little guy has this friggen disease. hate to see it happen to children specially the newborns. I hope he is doing well on PD. Must be so hard for you and him.
I will pray that a kidney will come up for him ASAP. So he and the rest of your family can have a somehwat normal life.
P&K
Hope to see you post in many of the threads.
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Curiosity killed the cat
Satisfaction brought it back
Operation for PD placement 7-14-09
Training for cycler 7-28-09
Started home dialysis using Baxter homechoice
8-7-09
Darthvadar
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Re: hello from the uk
«
Reply #2 on:
July 08, 2009, 10:06:34 AM »
Hello and
Hope it all works out for your little man, and that the kidney comes very soon...
Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
monrein
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Might as well smile
Re: hello from the uk
«
Reply #3 on:
July 08, 2009, 01:12:22 PM »
So sorry to hear about your little guy but glad that you found this site. It has been so helpful in so many ways for so many of us and I hope you'll post often.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
willieandwinnie
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Re: hello from the uk
«
Reply #4 on:
July 08, 2009, 01:35:50 PM »
koutsounel. It breaks my heart to hear children having to deal with this. You are correct about we need to support each other and share information. Hope your baby gets that call fast but n the mean time, please keep posting.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
jessup
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Gemma - the tucker monster
Re: hello from the uk
«
Reply #5 on:
July 08, 2009, 03:22:30 PM »
G'day and
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
Re: hello from the uk
«
Reply #6 on:
July 08, 2009, 03:42:01 PM »
Welcome and looking forward to getting to know you.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008. Now on PD with a cycler. Working very part time - teaching music. Love it. Husband is Paul (we're both 46), daughter Molly is 13.
Romona
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Re: hello from the uk
«
Reply #7 on:
July 08, 2009, 04:56:17 PM »
I also hope all goes well for your little one.
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rose1999
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Re: hello from the uk
«
Reply #8 on:
July 08, 2009, 11:35:09 PM »
Hi from someone else in the uk
I'm here as carer for my Dad who is 80 so we are opposite ends of the journey, I hope and pray your little one gets a kidney soon.
Where in the UK (roughly) are you? Which hospital are you under? We are under the QE Birmingham but live about an hour and a half away, on the Welsh borders. You are so right about the need for support and the fact that no-one knows what we (as a family) go through, dialysis does not just affect the patient, we are hoping to get on local radio who will spend a dialysis day with Dad to show people what it entails. Waiting for a call from them to confirm a date.
Wishing your baby all the best.
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Joe Paul
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Re: hello from the uk
«
Reply #9 on:
July 09, 2009, 12:29:32 AM »
Welcome Koutsounel, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
koutsounel
Newbie
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Re: hello from the uk
«
Reply #10 on:
July 09, 2009, 04:03:30 AM »
Hi,
We are located in the London area, and we go to GOSH. We have to count our blessings really, 15 years ago the only option for these babies was palative care. However science has moved forward in this area, and even premature babies can dialyse. Good luck Rose1999 with the radio thing - I have enough going on at the moment I can do without the publicity! At the moment BBC2 is filming a documentary and they are doing some things at the renal ward, so I hope we get a transplant after they have finished. I would not like to watch my son's operation on national tv, in fact I would not like to watch it at all!!
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And no resident will say: “I am sick.”
Isaiah 33:24
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!
Re: hello from the uk
«
Reply #11 on:
July 09, 2009, 05:46:57 AM »
Welcome Koutsounel. You have found a fantastic patient forum. We learn lots and lots from each other on this site and above all give much needed support and understanding of what you are going through. I am a dialysis patient but also know what it is like to be a parent of a sick child (Cystic Fibrosis) and my innermost thoughts are with you at this time.
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Ken
David13
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A meow massages the heart.
Re: hello from the uk
«
Reply #12 on:
July 10, 2009, 04:13:02 AM »
Welcome!
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
Maxridex
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Re: hello from the uk
«
Reply #13 on:
July 15, 2009, 04:58:48 AM »
OMG ! welcome ! I'm dialysing at Evalina Children hospital inside GSST. You are in Great Ormend street right? nice to meet you. I'm 16 and I live in London. Hope to talk to you someday. So when is the bbc 2 documentry gonna show? I really want to watch it ! It's just so exciting.
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'' Never give up '' & '' You will never walk alone ! ''
* ARSENAL FC for life *
* AVRIL LAVIGNE FAN *
Feel free to contact me on my msn.
matthew_as123@hotmail.com
MandaMe1986
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Re: hello from the uk
«
Reply #14 on:
July 15, 2009, 10:21:55 AM »
Hello, happy to have you. I am so glad you found this site, its full of lots of love and support. Tons and tons of help just ask a question and answers will come flying at ya. Hope to see you around.
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.
Matthew 5:3-9
cariad
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What's past is prologue
Re: hello from the uk
«
Reply #15 on:
July 15, 2009, 01:10:47 PM »
So sorry to hear about your baby! Please keep us updated on his progress. I am hoping he gets his transplant soon!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
koutsounel
Newbie
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Re: hello from the uk
«
Reply #16 on:
July 17, 2009, 02:46:44 AM »
Thanks to all of you for your messages!
Maxridex, we visited Evelina for second opinion before we commenced treatment - which the doctors called "aggresive" but I think at some point the best way to describe it was "too much" (like going in to theatre on a weekly basis!). In the end we decided to stay with GOSH, for a variety of reasons....
I don't know when the BBC will show the documentary, I will look out for it though and if they put it on i-player I will post the link because maybe people outside the UK would be interested too.... I don't know how long they would be filming either, but hopefullly it's over by now because these are difficult times and we can really do without the publicity!!! But it will be nice to see our little friends - as in your cases obviously - we all get to know eachother on the renal ward, as it is pretty much the same people in and out all the time.... and we were initially in-patients for 7 months, so we really made quite a few friends...
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And no resident will say: “I am sick.”
Isaiah 33:24
kitkatz
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Re: hello from the uk
«
Reply #17 on:
August 02, 2009, 07:36:42 AM »
Wow! It would be hard to have a little one on dialysis. I wish you all the best of luck and the kindest care you can find! Welcome to the boards!
kitkatz,Moderator
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lifenotonthelist.com
Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5
Remember your present situation is not your final destination.
Take it one day, one hour, one minute, one second at a time.
"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kellyt
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Re: hello from the uk
«
Reply #18 on:
August 02, 2009, 07:52:04 AM »
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten
Re: hello from the uk
«
Reply #19 on:
August 02, 2009, 09:30:32 AM »
Welcome to our community! Though I am glad you have joined us, I regret the reason that brought you here. You are now part of a loving and caring family
We will be there with you all the way through this journey. Just keep us posted and let us know how things are going with you all.
Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"
I LOVE my IHD family!
willowtreewren
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My two beautifull granddaughters
Re: hello from the uk
«
Reply #20 on:
August 02, 2009, 11:50:50 AM »
I missed this when you first joined, K.
So here is a belated welcome. I admire your courage in caring for you little boy.
We are all on this dialysis journey together.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
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