I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: koutsounel on July 08, 2009, 08:50:25 AM
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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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:waving; 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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Hello and :welcomesign;
Hope it all works out for your little man, and that the kidney comes very soon...
Darth...
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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.
:welcomesign;
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:welcomesign; 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. :cuddle;
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G'day and :welcomesign;
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Welcome and looking forward to getting to know you.
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:grouphug; I also hope all goes well for your little one.
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Hi from someone else in the uk :welcomesign; 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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Welcome Koutsounel, good to have you aboard.
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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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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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Welcome! :welcomesign;
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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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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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So sorry to hear about your baby! Please keep us updated on his progress. I am hoping he gets his transplant soon!
:welcomesign;
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Thanks to all of you for your messages! :thx;
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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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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:welcomesign; :grouphug;
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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 :grouphug; 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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I missed this when you first joined, K.
So here is a belated welcome. I admire your courage in caring for you little boy. :grouphug;
We are all on this dialysis journey together.
:welcomesign;
Aleta