Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
Original poster
ReindeerBollocks · 02/06/2011 21:22

Just got back from the hospital, (a very good friend has the DCs). DH's tacrolimus levels are very high - he is on Prograf too, which I missed off the list yesterday.

They believe that the tac is causing the swelling and creatinine rise. His creatinine has fallen today by 8 points so they aren't going to biopsy yet. DH is very reluctant to biopsy as our transplant is a fairly new type (ABO incompatible) so he wants to see what our constant says - consultant is on holiday until next week. DH would have biopsied today if the levels were still high but is not so convinced since it has dropped.

So we are now looking at a drug/infection and not rejection, as the likely scenario. Rejection hasn't been ruled out, just pushed to the back of other causes.

We are relieved. DH was very upset over the last few days, and whilst still stressed he is much calmer today. He only realised today that he missed his first day as a Barrister in Crown Court - that was supposed to happen on Wednesay! Thinking of work has always been a sign that he is ok.

I did want to say thank you to everyone who has responded. This has been such a long process and every ounce of support is very gratefully received.

I now know that the first year is very tough (something they neglected to tell us pre transplant!) and can take a while to get levels/ rejection under control. So while we expect this may happen again we will at least be slightly more prepared - well as much as you can be in these circumstances :)

OP posts:
UrsulaBuffay · 02/06/2011 21:24

Oh I'm so pleased to read how much more positive you both sound!

kreecherlivesupstairs · 02/06/2011 21:26

My word. Pleased, if that's the proper response that it could just be an infection rather than rejection.
You are in my thougths tonight, I dont' do prayers, although if you think they could help, both DH and DD are card carrying christians and I'll ask them to do one for you.
Once again, very best of luck.

noddyholder · 02/06/2011 21:47

That sounds positive I couldn't tolerate tacrolimus and had to stop it. I was oncyclosporin and then azathioprine which I am still on now sometimes it needs a tweak to get the drugs right. Fingers crossed I know how stressful this is but he will get there x x

JasHands · 02/06/2011 21:53

Delighted to hear that the picture looks much better today. Fingers crossed that the levels are soon under control.

Northernlurker · 02/06/2011 21:59

Hurrah for better news! That tacrolimus is tricky stuff Grin Really hoping everything continues to get better. Does your unit use Renal Patient View so you can follow his blood results at home? Link here if you haven't seen it.

PacificDogwood · 02/06/2011 22:07

Oh good, positive news Smile.

I hope things continue to go well.

sharbie · 02/06/2011 22:20

hopeful Smile and a big hug x

RichTeaAreCrap · 02/06/2011 22:54

Have been looking in for an update today and so glad to see one that is positive and very hopeful.

Really hope your DH continues to get better and they can keep his levels under control.

Thinking of you both.

ThisIsANiceCage · 02/06/2011 23:21

Just seen this. Crossing fingers for you that everything settles down again.

And you know a little howl and quantities of chocolate are allowed after being Relentlessly Positive all day? 'Tis the Law. Smile

Imnotaslimjim · 03/06/2011 09:01

So good to hear that you have some positive news. Re the first year being tough not being mentioned, my friend said exactly the same thing. She said they tell you that you need to transplant and that life will be so much better afterward. What they don't tell you is that to start with its a round of hospital visits, overnight (and longer) stays, tests and checks and stil feeling pretty rotten. It takes a long time for your body to accept the new organ properly and for it all to heal

One thing - when he had the kidney put in, did they put in a shunt? My friend needed one, and they forgot to take it out and it got infected 3 months later, that caused her major problems as they thought she was having full on rejection

Original poster
ReindeerBollocks · 03/06/2011 10:35

Not good news. DH's creatinine has shot up and they did the biopsy. They are now looking at rejection being the main cause. Tac is similar levels to yesterday so they are ruling that out for the moment. Tac is still quite high though.

Imnotaslimjim DH has a stent in too, it is still there and I was pushing for this to be removed as he has already had an infection from it. They did the ultrasound on the basis that if it was the stent causing the problem they would be able to see any potential blockages and problems. As it is, there we're no blockages so the stent remains - which I am concerned about.

We are just waiting on results which takes a few hours. Fingers crossed (again). Not sure when I'll next be back to update as there is a lot to be done and organised sorting care for DC's. Plus we have to see what course of action they want to take if it is rejecting.

OP posts:
Northernlurker · 03/06/2011 10:41

You need to ask them then what is the benefit of the stent remaining in place versus the risk of infection. I've no doubt that the team are making the right call there but they should be explaining that rationale to you both.
Sorry things aren't looking so good today. It really is a rollercoaster isn't it?
Hang in there Smile

ThisIsANiceCage · 03/06/2011 11:07

Thinking of you all.

noddyholder · 03/06/2011 11:12

Yes do hang in. I thought they took the stent out sooner than 2 months. If his levels are high have they reduced the dose? I really hope things work out Dp and I are thinking of you both today we have been where you are and it is hard xx

MrsMeow · 03/06/2011 12:17

Thinking of you all, Reindeer.

Northernlurker · 03/06/2011 14:23

Noddy I was wondering that about the tac dose too. I know it can take a fair bit of tweaking though and you don't want to drop it too much, too quickly.

Imnotaslimjim · 03/06/2011 17:05

REindeer, that is the problem my friend had, there was no blockage etc showing up so they lef the stent alone. What they didn't know was her body was trying to force it out, and causing infection in the same way you would with a splinter in a finger (just on a bigger scale) please tell him to push to have it removed

Even with his levels rising, it still doesn't mean its the end of it. There is a lot they can do to help prevent rejection, just hang in there. Hope you're doing ok too, you've done a great good thing and it must be terrible for you knowing that it might not have worked

PacificDogwood · 03/06/2011 17:26

Oh crap, Reindeer. Crossing everything here for you and your DH.

Original poster
ReindeerBollocks · 03/06/2011 21:54

It was confirmed today by biopsy that the kidney is rejecting.

Bummer.

The tac has actually been bouncing around (everything from 1 - 16) so they are trying to stabilise that.

They have also started IV steroids to combat rejection. They are also taking out the stent whilst he's there anyway.

We have three days to pray it works see a drop in creatinine hopefully.

OP posts:
Original poster
ReindeerBollocks · 03/06/2011 21:57

And thank you for all the messages they are really helping boost my positivity :)

OP posts:
Northernlurker · 03/06/2011 22:57

Good work keeping positive. You've done all you can - just keep hoping. They can treat rejection and they are doing so. HOw are your kids doing?

PacificDogwood · 03/06/2011 23:04

I hope the steroids kick in quickly. Wishing you a good night's sleep Smile

sharbie · 03/06/2011 23:09

best of luck with everything.

RichTeaAreCrap · 03/06/2011 23:14

I hope the steroids work quickly for him, lets hope that they do. Glad you are staying positive, it will help.

I'll keep everything crossed for you.