Around this time four weeks ago they were bringing hubby round after his transplant.
A few folks have sent lovely PM's asking how things are going.
He spent 18 days in hospital having a great first week then a few blips into week two - pseuodoaneurysm in his groin, blood clot near the liver (hint of infection) and a reduction in quality of bloods all resulting in him needing a bit of intervention by way of an ultrasound guided thrombin injection, IV antibiotics and a liver biopsy.
There have been notable improvements in many symptoms straightaway - HE gone, spider naevi, palmar erythmia, caput medusae all away. Hormones returning
BUT, he still feels like he's been run over by a bus - his wound has healed wonderfully but he's still covered in bruises from the heparin injections and fatigue wise he is as bad as ever. He's got little appetite and still using supplement drinks. Sleep pattern is all over the place and everything is an extreme effort and he sound breathless even doing the merest of exertion.
Blood sugars are a bit unsettled due to high dose steroids, Tacrolimus and supplement drinks.
We were at clinic last Thursday, co-ordinators said he was doing well. We saw a new (to us) doctor and she said hubby looked depressed and said we should see GP about that side of things. She didn't explain much about the situation just now.
Never got feed back on the full report from his biopsy. Bloods were taken and on Friday we got a call to say they needed to bring forward this coming weeks clinic from Thursday to Tuesday and have also booked him in for an ultrasound scan so I am surmising that something isn't quite right.
Hopefully this is all routine, 'early days' type stuff and he'll slowly get better and we will start to see more improvements as time goes on.
We'd appreciate some post transplant feedback as to how others felt around this time. We are now into uncharted territory for us.
Katie xx
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AyrshireK
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Hi I am really sorry to hear what he is going through have you been to one of the meetings on line with the British Liver Trust there are very interesting there is one for pre and post Transplant group you might find useful there is one this Thursday at 4pm you should ask the liver nurse about it xx
We went home the day after he got out of hospital as I needed to hand in his discharge paperwork and get new meds ordered. We came back this past week for clinic - good job we did stay at c'van this weekend with quick change round. Will need to pop (3 hours) back home at some point soon as we need to pick up his repeat prescription and more supplement drinks. We can only occupy caravan for up to 28 days at a time or it's looked on as residential use and not allowed so we do have to come and go.
Hahaha, can't beat the bruises. It looked like I'd been 10 rounds with Mike Tyson, lol.
What you say about sleep patterns and everything feeling like it's a great effort, no need to stress, that was entirely the same for me. To be honest, your hubby sounds like he was in a much worse condition going in than I was, so don't be surprised I'd it takes a lot longer before things like that get easier. Just be patient with it and take your time. Do though make sure he does get up and about, even if it's only for a few minutes at a time. And yes, if possible, some short walks. Round the garden, up the street is a good start. If you can get hold of a walking stick, you'll find d that will be a great help with that too, and with just pottering round the house. Don't let him get too complacent. You may have to nag him a bit if he doesn't feel like it.
Hope thats helpful. By all means do keep resilient and eyes out for anything that looks like a complication or worsening in condition. But, hopefully, you'll get to see some more noticeable changes over the next 6 - 8 weeks or so. You will find he'll still get tired for many months to come. But again, that's normal. It was for me anyway.
Thanks Kristian, he saw so many folks going out of the door at a week and two days post and thought he'd bounce back the same. It's going to be time - he was so ill latterly going down hill so suddenly - dietician told us on Thursday that he'd been fast approaching the 'too weak' for t/p stage so it's no surprising he's taken a dip and not yet risen.
It helped him see that it does take time and a it of effort to get over this massive op.
I can see bit steps forward already - not mopping the floors or changing soiled clothing on a daily basis for starters - which is a huge plus.
And don't forget too, he'll be really closely monitored still. So, if the docs say they're happy with things, they generally are. They'll let you know pretty quickly if they want anything to change.
It's a huge thing, so I am not surprised there have been some blips along the way. I also think that the stimulation/excitement/relief immediately after the operation can mask a lot of the difficulties in the early days and this might explain an excellent first week followed by some issues. I have no experience of any of this, so my comments are simply my suppositions. Wishing you both well. Thanks for the update.
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