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Original poster

DH's new kidney - potentially rejecting

67 replies

ReindeerBollocks · 01/06/2011 22:19

I donated a kidney to DH a couple of months ago. All has been well so far, but his creatinine has been slowly rising. His creatinine spiked over the weekend and they ordered an ultrasound which shows swelling and they have said the body is rejecting the kidney.

They are hoping to biopsy the kidney tomorrow but I'd love some advice of what happens next ( DH's consultant is on holiday and his current practioner is being a bit vague). We are not sure what treatments are available or how we can work back from this. DH is extremely anxious and has told me he won't go back on dialysis if it does reject (he is panicking and I know he doesn't mean this).

I'm a bit extremely worried and would love advice from anyone who has knowledge of this.

Thank you for reading.

OP posts:
UrsulaBuffay · 01/06/2011 22:21

I don't but would like to offer you one of my patented secret hugs

MmeBlueberry · 01/06/2011 22:24

No idea, but you aremin my thoughts and prayers.

PacificDogwood · 01/06/2011 22:26

No specialist knowledge here, but so sorry to hear this.

Presumably they need to wait for biopsy results to confirm whether it is a rejection? Could your DH's anti-rejection meds then be re-jigged??

Huge sympathies to you both; must be such a scary time for you. Wishing you and him much strength.

Bluebell99 · 01/06/2011 22:27

What a lovely thing for you to have done. I don't have any experience but thinking of you and yr dh ((hugs))

Original poster
ReindeerBollocks · 01/06/2011 22:32

Thanks you lot (don't be too nice though as I'll start crying).

I have no idea if they can juggle with the anti rejection meds as he has had a reaction to them already (rash). I've been googling but different trusts seem to do different things and it depends on his tac levels (which aren't back yet).

The person who performed the ultrasound told DH is was definitely rejecting, which has made his renal team panic - and in turn so is DH.

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Imnotaslimjim · 01/06/2011 22:42

I have no specialist knowledge, but a do have a friend that has gone through this recently

She had a cadaverous donor, after being on dialysis for a long, long time. She suffered 4 rejection episodes in the first 5 months, and each time she had a biopsy and a meds adjustment and it would settle again. She's now nearly 12 months in and is doing fantastically.

I've got my fingers crossed that it goes just as well for your DH

noddyholder · 01/06/2011 22:44

Oh no reindeer I know they can sometimes use high dose steroids in these situations. Has he only been on tacrolimus?

Original poster
ReindeerBollocks · 01/06/2011 22:56

Noddy. I know he is on myfortic and prednisone (I apologise I think the spellings of these drugs are wrong). I am hoping they can bring it under control but I don't know how long they want to keep him in for and how long before they just call time on the kidney?

Imnotaslimjim I really appreciate hearing how your friend is doing, makes me realise we're not the only ones and that hopefully this is just an rejection episode.

I'm at home with just the kids and just got a bit upset. Feel daft really, as crying isn't going to help. I've been positive all day, and I think I've just cracked. Sorry.

OP posts:
Original poster
ReindeerBollocks · 01/06/2011 22:56

How many musts can I fit in one paragraph Grin

OP posts:
Original poster
ReindeerBollocks · 01/06/2011 22:57

How many justs can I fit in one paragraph! Damn autocorrect.

OP posts:
JasHands · 01/06/2011 23:08

Hello Reindeer. You're right, different hospitals have their own protocol for treating rejection. I would imagine that they will want the biopsy done first to confirm rejection and if it is, what's caused it. Probably will treat this with intravenous high dose steroids and look at the Tacrolimus levels as you mentioned.
After a live donor transplant (well done you, how are you doing?), I think that the medical team will do everything they can to avoid your husband returning to dialysis. Not sure of the figures, but think a rejection episode is more common than perceived in the early stages. Good luck.

sharbie · 01/06/2011 23:09

good luck reindeer - hope all goes well for you

Original poster
ReindeerBollocks · 01/06/2011 23:15

Thanks Jazz and sharbie. I was worried the biopsy could do damage to the new kidney as I know DH had trouble with the last biopsy (he was urinating when his kidneys were damaged, they did the biopsy and it caused the urine output to stop completely).

Fingers crossed for tomorrow then, I guess.

OP posts:
tooworried · 02/06/2011 06:44

Thinking of you and it brought to mind my friend's lovely, lovely dad. He was one of the first ever kidney transplants in the UK eons ago. First one rejected and second one lasted him far, far longer than he anticipated (remember this was pioneering stuff). He had the kidney for about 40 years. Hope you get good news today.

kreecherlivesupstairs · 02/06/2011 07:13

Fingers crossed for a postitive outcome today.

noddyholder · 02/06/2011 08:08

I have everything crossed for your dh and you thinking of you both. I think a lot of people experience this in the beginning ad because it is live donor they will move heaven and earth please keep us posted x x

Buda · 02/06/2011 08:11

How worrying for you both. He must be totally panicking about going back to being so ill.

Fingers crossed for you both.

whyme2 · 02/06/2011 08:14

Hi Reindeer we met on the SAHM thread. Hope you get good news today.

Northernlurker · 02/06/2011 08:17

My instinct is to say 'don't panic' but as I work in admin in a renal unit I know that's far easier said than done! Rejection is treatable - it doesn't mean that the kidney is packing it in altogether. I don't think anybody can tell you what will definately happen because it varies from kidney to kidney. Keep asking questions and keep hoping. The first year after transplant is very often a rollercoaster for patients and it's not uncommon for patients to feel they felt better on dialysis! Nearly everybody gets there though.
Just hang in there together. I think that it's particularly hard on couples with live transplants when anything goes a bit awry because it does feel like the stakes are so much higher. I suspect part of your dh's panic is that this is your kidney that is involved if that makes sense. Will be looking out for updates Smile

NonnoMum · 02/06/2011 08:22

Good luck to you. Hope you get to see the original consultant soon.

BerryLellow · 02/06/2011 08:25

Fingers crossed for you both today.

PacificDogwood · 02/06/2011 08:29

Thinking of you and sending good luck your and your DH's way today.

noddyholder · 02/06/2011 08:32

I agree with northern! When I am ill and things look shaky the first thing I think sometimes is if it go wrong how will I tell my brother!

noddyholder · 02/06/2011 20:56

Any news today? Hope things are improving x

Chocamochalatte · 02/06/2011 21:01

RB, my mum had a kidney transplant many years ago and found this site really useful: www.britishkidney-pa.co.uk/forums.html