Steroid resistant rejection?

[strangecarr]

Hello, I recently wrote on here as my wife has been readmitted to hospital with suspected rejection episode (she is now almost 11 months post transplant). She initially responded to 3 days of IV steroids. She was discharged, but recent bloods have got worse, they have now prescribed MMF on top of Prograf/pred/valgan too (she was also on this for the first few months post transplant). They mentioned they found some anti-donor antibodies in her blood.

My question is has anyone experienced steroid resistant rejection? Looking on line it seems that are a few ways to treat it so would be interested to hear anyone's experience. My wife's case is quite complex as she had CMV infection so they have to strike a very careful balance...

Thanks!

[Jahida]

Strangecarr, sorry to read about your wife. This is the scary part about a transplant. You never know the donor's history fully. I really hope they find a solution or the medicines start working. Is the liver going through rejection now? How is your wife feeling in herself? Also is she back at hospital?

I really hope some of users here will give you some answers. I really feel for you guys. Having little children and having a partner that is unwell, is emotionally hard work for the whole family.

Lots of best wishes and I'll be dropping in to find out about your wife.

Good luck

[strangecarr in reply to Jahida]

Hello Jahida,

Yes her liver isn't doing too well as her blood results have got worse. They think it is some sort of rejection but its hard to diagnose compared to early stages post transplant. She is quite tired a lot, but she has also returned to work plus we are always tired with small children!

She is not back in the hospital at the moment, we have to go to clinic on Monday for more bloods and depending on the outcome she will be admitted (this is what happened last month when I wrote the other post).

Fingers crossed the latest change in meds has an effect! I hope all is good for you during your recovery!

[pear-shaped in reply to strangecarr]

Dear Strangecarr,

There is so much tweaking needed to be done post transplant that it feels like there is no end to it! I am so sorry that you are having to face this time and time again... Once they can get on top of it then the body/liver begins to play ball - my husband had cmv after the first transplant and kept on getting it again and again - eventually they put him on a drip med which sorted it but he needs to be checked for it as he can get it again anytime...

I hope and pray that your Mrs recovers and that you can enjoy life as a family...

Pear

[mousehold]

I have had a liver transplant and keep hearing about cmv. Can anyone tell me how you know you have it? I am extremely tired all the time and have high ggt. My docs don't seem worried though.

[mousehold]

ps my latest liver scan shows fatty liver

[pear-shaped in reply to mousehold]

Dear Mousehold,

Patients and donors are often cmv positive - it poses a huge problem in the case of liver transplant. Cmv is a virus and if your donor had it - it would appear on your reports as cmv positive donor. If you had it the it would appear as cmv positive recipient. Normally it is treated with valganciclovir - but if you become lukeamic then they will try to use an introvenous medicine. It can return so is monitored through blood tests.

Hope this helps.

Pear