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Life-limiting illness

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Original poster

Finally we're ready for transplant!

20 replies

whoops · 12/12/2013 22:07

Ds (12) has been in renal failure and on Haemo dialysis since December 2011. We were lucky and he managed somehow to gain his kidney function back for 6months before they failed again in February this year.

On Tuesday he had both kidneys removed which was the last procedure required on his work up so hopefully he'll be able to go on call for a new kidney in a couple of weeks!

It's all very scary, exciting, nerve wrecking and god knows how I'll cope each time the phone will ring!

OP posts:

onedev · 12/12/2013 22:09

Good luck.

LifeofPo · 12/12/2013 22:10

This reply has been deleted

Message withdrawn at poster's request.

GoodKingWencesLACK · 12/12/2013 22:11

Oh my word! Wishing him all the very best of luck and that he doesn't have to wait too long. I can only imagine the emotions that you all must be experiencing at the moment.

TheGonnagle · 12/12/2013 22:12

Keeping my fingers crossed for you and your son x

sallysparrow157 · 12/12/2013 22:15

Good luck!! One of my patients had a lung transplant recently, he was in hospital when the call came, we were all so excited! And a little girl I looked after following her liver transplant had been on the list less than 48 hours before the call came! Both have done fantastically well post-transplant too :)

Original poster

whoops · 13/12/2013 21:40

Thank you,

I've met a few parents of little ones who've had their transplants and it's a long journey! I hope it happens sooner rather than later as 3x week at the hospital can get draining

OP posts:

clucky80 · 13/12/2013 21:54

Hi Whoops, I wish you all good luck :) it must be so hard with the 3 x a week dialysis and very draining on all of you. How is DS in himself? I was much older but I had a kidney and pancreas transplant when I was 26. It totally changed my life, I had been unwell really since I was 12 on and off although I led a fairly normal life but a few months after my transplant I felt better than I could ever remember feeling even as a child. Post transplant I shared a room with a 17 year old girl in hospital who had had a kidney transplant. She was absolutely flying around the day after, eating and drinking and planning nights out with her friends! I waited exactly 6 months to the day for my transplant. It was my third call up though and it was well worth waiting for. It has been nearly 7 years now and (touch wood), I have had no episodes of rejection or big issues since :) I had a native nephrectomy 2 years after transplant but that was because of recurrent uti's and I haven't had any since. Since transplant I learnt to drive, got married, travelled and best of all and despite all the odds I have had 2 healthy little DS's :) DS2 is 5 weeks old and DS1 is 3.
I really do wish you all the best. The wait can be tough at times and I always jumped if the house phone rang as I knew it could be the hospital! I used to keep in regular contact with the transplant co ordinatior so I would know how close I was getting to the top of the list and that helped me to feel a bit more in control.
Take care and I will look out for updates x

Original poster

whoops · 13/12/2013 22:00

Ds deals with it really well even to the point of asking a nurse to look after me while he was in theatre on Tuesday!
The transplant will take place at a different hospital which is scary as we won't know the nurses as well as we do at our hospital.

Glad things are going well for you after your transplant

OP posts:

clucky80 · 13/12/2013 22:11

Ah what a lovely boy :)

Is it a more specialist hospital DS is going to? I had my transplant at a different hospital too and then had my care transferred back to London when I was discharged.

I know a few other kidney transplant patients who had their transplants at a similar age to your DS and the same kidney is still functioning well now that they are in their 30's. I also know a guy in the States who has had his transplanted kidney for 31 years so far!

Original poster

whoops · 13/12/2013 22:23

I don't think it's a more specialised hospital I think ours can't do transplants due to the area it covers not having enough population or something like that!
After he's had the transplant all the care will go back to our usual hospital for clinic etc

Ds has a disease that could come back in a transplanted kidney, which is why they took his native kidneys out, so am also terrified that may come back too

OP posts:

TheGhostOfPortoPast · 13/12/2013 22:34

Wishing you and your DS all the best for a happy and speedy transplant.

Original poster

whoops · 19/12/2013 13:04

Thank you!

We've now been told he'll be on the transplant list from 01/01/14!

OP posts:

TheGonnagle · 19/12/2013 16:46

That's great news. Where are you listed? Try not to think about the donor organ getting sick, it's a possibility not a certainty. Currently sitting in renal outpatients as I type although thankfully not in the same situation as your ds. Have you been on inspire? Mainly US site bit has sections for each disease. I'm on the nephrotic syndrome bit. Also nephcure.
Wishing you a restful Christmas and an early transplantdate Iin the new year x

Original poster

whoops · 19/12/2013 17:25

Hi I've not heard of inspire, I'm on some nephrotic and fsgs groups on Facebook.
How all is ok with you have you had a transplant yourself?

OP posts:

noddyholder · 19/12/2013 17:29

Wishing him all the best he sounds amazing. I also have had a renal transplant (twice) although I also was older. It really does change everything xx

Original poster

whoops · 19/12/2013 18:09

Thanks Noddyholder, I think you posted on some my posts when he was first diagnosed, I didn't realise then where we would end up!

He is amazing and has dealt with so much very proud of him

OP posts:

onedev · 20/12/2013 00:14

Still thinking of you & your DS Op & wishing you well.

TheGonnagle · 20/12/2013 09:31

Hi whoops. no I haven't had transplant, my renal function is still good, it's just the filtration units that are screwed. I have minimal Change DIsease, not FSGS thankfully. My condition is being managed with immunosuppressants. I'm taking Cellcept, which your DS may well end up on after his transplant, as it's mainly used as an anti rejection drug.
Are you on the nephrotic adults and teens board on Facebook? Quite a few parents of teens are, and your ds is almost a teen! It's a closed group but I can add you if you like? PM me.
Wishing you all the luck in the world x x

dulwichparkrunner · 21/12/2013 13:16

Good luck with it all. I donated a kidney to my dad 5 years ago and it's amazing to see how his life has transformed- which in turn has transformed the whole family's life.

My dad was initially on the waiting list for a cadaver kidney but time passed and there wasn't one available. I didn't volunteer to donate my kidney initially because I thought - well if he could get one from the waiting list that makes it easier for me (busy life, I'm a mum etc) but something which no one had told me - I guess because no one wants to guilt trip relatives into donating changed my mind.

What I learned was that there is a huge difference in the performance and lifespan of the kidney - vastly better from a live donor kidney (can last 20 years plus) while a cadaver kidney has a span of as low as 10 to 15 years - tho some are longer.
I would have stepped forward much earlier had I known. When I was in hospital donating I met patients having to have their second transplants as earlier

dulwichparkrunner · 21/12/2013 13:19

Sorry posted too soon. But just wanted to say good luck.

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