After 1 year?

[strangecarr]

Hello all, my wife had a transplant in Dec 2014 after suffering sub-acute liver failure. She had seronegative hepatitis, and went onto the super urgent list so we only waited three days. Its been quite a rocky road since with a few complications, and she is back in hospital at the moment with high LFTs but Drs aren't sure why.

My question is, do things tend to settle down after a year after transplant? (in general, I know each case will be different).

We have a 1 year old and a 3 year old and are just about to move house, so it would be quite a stressful time without the liver problems!

[Bolly]

Did the doctors ever diagnose the cause of her liver failure and if so,could it still be in her body or could it be back?

[strangecarr in reply to Bolly]

No they never found out, probably most likely auto immune as she had colitis in the past. But they couldn't detect anything.

They think a little bit of rejection going on at the moment but are also doing scans to see what is going on with the bile ducts.

[ballie52]

Things can go up and down after a liver Transplant. .my husband went through this but things do settle in time..hope that this is the case with your lovely wife and you are able to get on with your move without all this stress Xx

[Jahida]

I just wanted to say I am so sorry to read this. I went through similar experience where my liver failed very quickly. They put it down to seronegative hepatitis too. During that time I had a 1.5 year old and 7 year old disabled daughter. We lived over 40 mins from the city but it would take over an hour to get to the hospital because of traffic.

I really hope your wife's LFTs settle down. I really will keep you in my prayers. I don't know how you adw managing with the children. Hope you have a good support network.

Good luck

[strangecarr in reply to Jahida]

Hello Jahida,

Wow your story sounds very similar to ours. I'm not sure we have come to terms yet with what happened as the cause was unexplained. I have spent many hours online trying to research it, and now I know a lot more about the liver than I ever thought!

Our youngest was only 5 months old when my wife's liver failed, she was still on maternity leave. We moved in with my mother in law and are still here, we are very lucky to have an excellent support network with lots of family around us. We are about 1.5hrs from the Hospital where she had the transplant when the traffic is good, but sometimes it takes us 3hrs to get home from clinic if its during rush hour! Its tough going but things could have been a lot worse.

My wife had actually gone back to work last month - she is now 10 months post transplant. Hoping this latest setback is just a 'blip'. It does worry me a bit due to the original seronegative diagnosis.

Are you in the UK, how far are you post transplant?

[Jahida in reply to strangecarr]

Strangecarr, yes our stories sound very similar with little kids in tow and being away from hospital. That is sad that her liver failed just when your little one was 5 months. Such an awful experience. I Dont think we can erase any of these events easily.

I am coming to 6 months post transplant. Still have good days and bad days. I moved to Cardiff where my family are for 4 months so the kids could have support. We originally live in Shropshire and while I was in hospital from April to June, my husband's sister looked after my children. She stopped working to look after them. Amazing woman! Then my mother and sister looked after them for four months after.

We moved back to Shropshire a month ago and so far so good. I had to take this step as my daughter who suffers from a very rare genetic condition was getting anxious to get back to school. She has lots of appointments too.

It is scary when they have no answers as to why the liver failed. You always worry about 'what if' but I feel there is a positive there. If we had any type of hepatitis then a lot of them would stay in our system. It could attack our liver again.

I know autoimmune is quite a scary one but if it is meant to happen it will happen again. However I pray your wife is going through a blip. I suppose we are always ready for these blips once we go through such a tragedy.

Your hospital is quite far. In some times wish I live around the corner now! I have just come back from my ITU follow up clinic to talk about my journey and see the bed spaces I was in. They also showed me a patient on all the life support machines and tubes and pipes. That made me cry. I hope this man gets well. I apparently came around 2 days after my surgery but I was still under sedation most days until another 4 days.

Please keep us updated on your wife. Is she in hospital? Also is she on anymore anti rejection drugs other than the daily ones she was on? Also is she jaundiced?

Best wishes to you all

[strangecarr in reply to Jahida]

Yes she is in kings college hosp, where she had the transplant. I think we are quite well known there now! She's been on every liver ward there now (3) and the ITU obviously.

They are treating her for rejection with methyl pred so hopefully the LFTs will come down. They thought it could be strictures but that's been ruled out.

No she wasn't jaundiced at all (although we checked her eyes several times a day), but had nausea and vomiting for a week or so. The coordinator said it was probably a bug but she went for a blood test just in case and then we got a call to come in.

They had to reduce the immunosuppressants a few months ago (and more valganciclovir) after she had cmv so maybe that led to the rejection. Everything is a balance!

[Raksha1964]

I hope ur wife recovers quickly, they never found the cause for my liver failure either & like u never come to terms with it. I'm just coming up a year, was diagnoised put on super urgent list n given 48hrs! Our donors & all medical staff are angels & am sure they will sort this set back for her.

It is good u have a good support network, I was luck my kids are 16 & 20 so a huge help supporting me! Xx

[strangecarr in reply to Raksha1964]

Thanks for your message Raksha, hope you are doing well now that you are coming to a year, it's quite a milestone. Where did you have your transplant?

Regarding the medical staff, the ITU consultants were the most incredible people I've ever come across. It's amazing the kind of expertise we have in the health service!

[Raksha1964]

Hi

As far as liver is concerned, yes really well, at 6 mths was told the liver totally functioning normally, however do have a sever spinal, neck & hip condition, much of which has been diagnoised from a MRI the liver consultant wanted! But trying to keep going.

I had my transplant at the QE Birmingham, 5miles from where we live, so helpful for check ups, no long round trips & if an issue there quickly.

Our NHS staff are truly amazing people, the care & attention they give to every individual is second to none, have nothing but good words to say about them. The things they put up with too, can remember my partner telling me one my CCU nurses even missed her lunch to sit & comfort my young daughter who was distressed.

Where did your wife have her transplant? Am sure they will sort this set back out soon for her. You are certainly have enough stress on your plate, but can only get better for you all.

[pear-shaped]

Dear Strangecarr,

I do hope and pray that this is only a blip and can be resolved quickly... Every individual transplant patient have very unique experiences - hence quite hard to give precise advice...

The main things to do is keep a record of all appointments - what's been said and decided and why - as well as getting a time line of what they are planning to do - as we all can see - the liver is so unpredictable and often things are missed or not even looked for.

At least with this information you can pursue and research what you need to...

Again, lots of positive thoughts coming your way...

Pear

[Jahida]

Any update? Hope everything is good

[strangecarr]

Hello all, I'm very pleased to say my wife was discharged from the hospital on Monday. She was treated for rejection with iv prednisolone, probably because her immunosuppression was too low (although they had to lower due to previous cmv infection). They are keeping a close eye on her and she has an mrcp (mri) coming up, but crisis over for now!

Thank you for your kind thoughts.

[Jahida in reply to strangecarr]

I have been thinking about your family! I am so glad to read this. I really hope the rejection has stopped? What is the MRI for?

[strangecarr in reply to Jahida]

Hello Jahida, her LFTs had got a bit better following the steroid treatment and as she didn't have many symptoms the hospital let her out- this was such a relief! She has clinic next week to check bloods again. The MRI is so they can check the biliary tree and check if there are any strictures as they initially thought this was causing the problem. Hope all is good with you!