So today (Wednesday 26th) hubbies revovery continues to go in a forward direction. He was a bit sore side lying overnight but hadn't grasped the concept of keeping his pain meds topped up. At this stage it's patient controlled analgesia where you have a little button that you can press every 5 minutes to deliver a dose of pain meds and he wasn't taking a sufficient amount - he was uncomfortable rather than in pain.
He was gotten out of bed and sitting in a chair all morning and they brought him food at lunch time though I think the psychological effects of his being unable to eat in the past couple of months was still evident and he was a bit wary. He managed a tub of ice cream and some water.
Physiotherapists came this afternoon to help him mobilise back to bed and he had a wee shuffle with a zimmer frame doing a few steps. They were pleased with him and are going to work with him to build his confidence etc.
During surgical rounds this afternoon they asked why n/g tube was still in as it was on orders to come out yesterday. So it got taken out this afternoon. His abdominal drain had only leaked 50ml of fluid today so that too can be removed to be replaced with a small drain pouch. Every tube and drain out is another step forward. Some urine bottles appeared this afternoon aswell so I assume his catheter may also be coming out.
Later this evening he is moving from ITU to HDU so he is progressing really well.
He was still chatty today, discussing some of his weird dreams - Roman Soldiers on the March (unsurprising 'cos in his room at home I have my Roman Reenacting Equipment so every day at home he awakens to be greeted with my Roman armour, shield etc.)
He was feeling a little overwhelmed like everything is moving really quickly and all at once plus he's tired. Everytime he tries to sleep he's getting poked, prodded or told to press his pain meds. He is still upbeat though and content that this is all part of the process and positive progress.
I am happy he's doing so well of course. I am looking after myself. I just had a picnic style tea sitting outdoors with Puss Puss getting some fresh air in her play pen.
I am doing ok, wary of any setbacks but hoping things will continue this positive moving forward.
Absolutely no need to reply, this as always is just me logging our experiences and it might help others who face t/p in future.
Thanks again for all your very lovely messages, I was reading some out to hubby today and he said there are lots of lovely people in the world.
Katie xx
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AyrshireK
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Yep we travelled our paths together first time round when both our lovely men were on the list at the same time. All quite surreal that we finally got there too.
Hi Katie, Thank you so much for once again taking your precious time to update us on hubby .. I'm so very happy to hear of the continuing progression, also that you too have managed time out to sit outdoors with puss puss and relax .
There are lots of lovely people in the world and you are one of them, giving up so much of your time and knowledge to people on here. What goes around comes around and the kind words and responses here are no more than you deserve.
His progress sounds incredible and while I'm certain you are waiting for the other shoe to drop, just keep being grateful for the positive steps forward.
Big scratches under the chin to Puss Puss, hope you're safe and sound in the caravan!
great he is doing so well. It’s great when you get the tubes out and start to get mobile. Superb care from our wonderful NHS👍. We are very blessed with our donors and families giving us the gift of life🙏
Sounds like everything is going well. Hospitals are exhausting places. There is always noise from beeping machines, lights going on and off, interruptions to check vital signs and hospital food when you really couldn’t manage a Michelin starred meal let alone a dried up ham sandwich! Hopefully he’ll be home very soon. Make sure you are relaxing when you can and thank goodness you were able to site your caravan close by. Take care.
just woken up and read your latest news - hubby is doing so well and I’m so happy for both of you . Yes there are so many lovely people in the world and you are one of them -a very special one . If you hadn’t reply to a post about my son when I was as desperate for help and asked me if he was r
It sounds like he is making excellent progress. Thank you for the updates - I am finding them very interesting even though I hope never to be in a similar situation or know anyone who is. I did have a recent experience in ITU/HDU with pneumonia, though, and am very familiar with the constant proddings. I would say that care was marvellous for me in critical care (as one would expect) and then once I got to a normal ward the wheels fell off, rather, in terms of being looked after. It was not bad as such but the staff were noticeably stretched and I had to do a lot of advocating for myself. So it is good your husband has you to help with that, because it can be quite exhausting even just getting someone to take you to the loo.
Yes, they encourage you to push the green button whenever you feel pain, I never like relying on pain meds and really worried about addiction so was always careful, but early days post transplant well worth dosing up whenever you feel the slightest pain, otherwise it builds up and it takes a bit before the pain meds kick in sufficiently to offset the pain.
Just remember he is going to hallucinate, have bad dreams, ground hog day over and over again. Struggle to tell the difference between real people and anime characters (hand holding works), try to get out of bed because he is so bored and try and tug his tubes because he needs to urinate only to discover he is tubed up and plugged in and doesn't need to get up to go to the bathroom.
As he progresses towards recovery (2-3 weeks before discharge) and they decrease the number of tubes, one of the most irritating ones is just below the head, in the neck, it's covered by a piece of tape that gets caught in your facial hair and you instintively try and pull it out, everytime you move your head it pulls on the hair.
His green button hasn't migrated with him to HDU. Now just getting tablet pain meds. No major hallucinations thus far, very compus mentis seeing as how badly he's had HE. Not many lines left in now, the last remaining central line in his neck and arterial line in his wrist were being removed this afternoon. He still has a drain pouch on the right hand side of his abdomen which is leaking a bit but they don't seem overly excited about it. He is coping ok with the catheter though they're talking of removing that tomorrow.
He's been up having a shuffle with physio's and looking forward to them bringing zimmer frame tomorrow and starting to mobilize more.
He ate a sandwich, half bowl of soup and tub of ice cream at lunch and dietician came to see him this afternoon. She was sharing our absolute joy and gave me a big hug. Then she produced the dreaded supplement drinks and he had one of those which instantly sent his blood sugars mad despite him being on a sliding scale continuous insulin pump so that seems to be a major deal trying to get diabetes under control. He's chatty, lucid and doing brilliantly.
I am awaiting the banana skin but so far only forward progress and we keep our fingers crossed it remains that way.
Wow, that's impressive, it took me weeks to get where he is by the sounds of it, I'm very happy for you both.
I remember how I had to be rotated up from the wards, I can't even remember them all G4, to G5 HDU and then G5 general recovery liver transplant recovery, each time needing less resources, but from what you say he is already in HDU that's a massive improvement, great!
Oddly after my liver transplant, my blood sugars have all but stabilised and I was able to reduce my diabetes medication substantially, mind you, not on those horrible drinks anymore, still sends shivers through me think about them.
i found food difficult the at first, everything was tasteless but I knew I had to try to eat to get stronger, but it was a struggle... Do keep us all in the loop. We all care.
I’m so glad things are going well. I frequently feel as if I’m slowing down, physically and mentally, so I can understand your husband might be feeling overwhelmed with the speed it’s all happening, the people he’s interacting with and the changes going on. It’s a big adjustment to make but I’m sure he’ll get there because he has you alongside. Onwards and upwards!
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Did you have post-transplant complications? Your survival story needed. 3 operations in 3 weeks. Will to live slipping. 
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What do you suggest?
