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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:

ThisIsANiceCage · 03/06/2011 23:17

Oh lordy. Hang on in there.

More wishes for a good night's rest, if you can manage it, and strength for tomorrow.

Original poster

ReindeerBollocks · 03/06/2011 23:27

I should be sleeping!! I have a DH shape in my bed which is currently filled by DS ( I never allow the children in my bed but at the moment its really rather comforting).

DCs are coping rather well, due to being around good friends and my fantastic, daddy-is-doing-well acting skills . They have been busy planting flowers and eating ice cream, thanks for asking. :)

Goodness, I mean DH has had a range of near death experiences since we've been together (two heart attacks, pneumonia etc). I'm trying to take this in good faith and I know that the worst that could happen is dialysis. Yes it would be devastating but DH would still be here so I would still be lucky.

Right, really have to go to bed, I've been on the ward all day, which is stonkingly hot and humid! If you see me On MN tonight please tell me off!

OP posts:

Original poster

ReindeerBollocks · 03/06/2011 23:28

ThisIsANiceCage - how've you been? Hope you are getting better too.

OP posts:

ThisIsANiceCage · 04/06/2011 00:36

Very well, thank you! (But I will just knock on wood as I say that...)

The view on the way up is so much more scenic than on the way down!

verytellytubby · 05/06/2011 10:53

Got everything crossed for your DH.

ThisIsANiceCage · 05/06/2011 22:15

Thinking of you today.

IslandMoose · 07/06/2011 13:23

Hope things are looking up, Reindeer, and that the iv steroids are helping.

RichTeaAreCrap · 07/06/2011 16:28

How are things today Reindeer? Hope things are getting better.

Original poster

ReindeerBollocks · 08/06/2011 10:08

DH is home :)

There were two types of rejection, he has had a course of IV steroids and his creatinine has dropped twice in two days. They have said the T cell rejection will have effectively stopped with the steroids but we will have to keep an eye on his creatinine as the other type of rejection, although only mild at this stage, isn't easy to treat and could get worse. All in all potentially he could lose the kidney if the second type of rejection gets much worse.

We've been warned, so we are just going to enjoy what time DH does have whilst dialysis free. They can't predict anything, so this kidney could last years (hopefully). DH a bit disappointed but he said there were no guarantees and it hasn't failed yet so I'm going to work on making him more positive over the next few days.

DH read the messages and said thank you to every for supporting me when he couldn't. We both really appreciated the support from everyone who took the time to read and post. I've learnt a lot over the last few days and MN has been a great help (as always!).

OP posts:

ThisIsANiceCage · 08/06/2011 10:54

Oh hurray he's home! And fingers crossed all continues to go well.

And you know we're here for a vent and a when it all gets too exhausting.

Imnotaslimjim · 08/06/2011 11:02

what great news! I've been thinking of you both often. Fingers crossed the creatinine stays where it needs to be

noddyholder · 08/06/2011 11:16

That sounds positive. Lets hope it continues. Every day without dialysis is a gift really enjoy it xx

RichTeaAreCrap · 08/06/2011 12:28

Great news that he is home, I have been thinking about you and hoping he was ok. I hope it continues to go well, it all sounds a lot more positive.

Northernlurker · 11/06/2011 23:44

Just looked this up. Great to see he's home and things are more stable. Hopefully he will have years and years with that kidney.

If he does at some point have to look at dialysis again, there is quite a bit of work going on atm about 'self care/shared care' where the patient does a lot of their own 'stuff' in a unit or in a specified self care unit. Some patients do everything including working the machine and putting their own needles in. This has fantastic benefits for a patient's state of mind - really helps them regain a sense of ownership. It's a step towards having dialysis at home if that's what you want or if you don't want to go home, it's a way of having in hospital dialysis without being so much of a patient. You may already kmow all of this but if not it's worth bearing at the back of your mind as something that may be handy one day. Hopefully that day will be years and years away.

ThisIsANiceCage · 14/06/2011 22:41

Just popping in to say haven't forgotten you, and hope things are still going well.

londonbabe · 30/06/2011 07:27

my hubby has had a kidney transplant. if the kidney is rejecting its usually treated with a 3 day dose of methlprednisalone. this usually works, there is a stronger drug done as an inpatient over a 10 day course called atg (cant remember what it stands for)

is he on tacrolimus or cellcept??? these are very good antirejetion, also increasing the pred can sometimes work in low level rejection,

hope hes ok, xx

clucky80 · 30/06/2011 17:42

Hi reindeer (I just saw ure name on the organ donation thread on aibu!). How is your husband doing now? I had a kidney and pancreas transplant in 2007 and am on Mycopeholate (Myfortic) and Tacrolimus. I haven't had a proper rejection episode but there have been times when my creatinine has shot up for no apparent reason. I know at my hospital (Royal Free - amazing place!) you will be treated with high dose steroids in an IV if you are rejecting. When my tac level is high my creatinine goes up and also when I haven't drunk enough. This is the basic stuff which I'm sure you both know already. My stent was taken out after a few weeks as I kept getting uti's and it was thought that the stent itself might have been holding onto infection. I really hope your husband's levels have settled down again now and that you are doing ok too. I (touch wood) haven't been ill since I had my DS in November 2010 and I am dreading if I have to go into hospital so I can't imagine what it is like when you have 3 children. Thinking of you both.

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