Little update

[Lippy42]

Well we now day 13 post transplant 🥰 what a time its been . No one warns you about the toxins and nightmares .I really thought ste had had a personality transplant 🙄 finally yesterday i saw my ste so fingers crossed i take him home tomorrow all being well x

[AyrshireK]

Glad you are starting to see the hoped for improvements and he does get home soon to start his recouperation.

Katie xx

[Rshc]

am so glad he has turned a corner - it must have been a scary time for you both. I bet you cannot wait to bring him home

[Mango5cm]

so pleased for both of you hope he keeps improving and don’t forgot to take of yourself ! Xx

[oxaram]

It’s great to see that he is finally starting to get better, bet you can’t wait to take him back home.

[Ewife]

Thank goodness. Really appreciate you keeping us updated with the good and the bad! Please keep it uniform you can.I'm interested to know how busy you are with care once he's home, and for how long.

Take care

Ewife

[MrsWorried]

So pleased he's turned the corner, must have been so frightening for you xx

[Huggy7614]

Great news that it’s all finally coming together. The journey home is a milestone - for both of you!! You can both start to get used to the new norm, a good place to be!!

Remember the pillow!! 😀

Good luck, Andy.

[Lippy42 in reply to Huggy7614]

Thanks and i did remember a pillow its in the car ready 😁

[Lippy42]

Its now going to be monday when ste is allowed home . So just a few more days to go xx

[Millie09 in reply to Lippy42]

Good luck for tomorrow... sending best wishes to you both.. Linda

[Yellowsydney]

Yes the nightmares and hallucinations are horrible, I helped edit the British liver trusts info on liver transplant and they did put it there about the side effects of the pain killers. When he gets home take it easy, no trying to rush his recovery, it takes about a year to recover. Laying in bed will be uncomfortable for quite a while, lots of pillows as it is easier sitting up, he will probably find it difficult to eat for a while and his sense of taste may change, everything tastes so bland to me and I added lots of spicy sauces which I couldn't stand pre transplant lots of small meals full of protein to help healing. He also needs to drink plenty at least 2 litres a day to flush the tacrolimus through his kidneys or He will get kidney problems. He will be given lots of information before He is discharged about ordering drugs, exercise and diet, there is a lot of foods He can't have for the first 6 w, keep all this information some where safe as it is useful to refer back to. He will also have lots of clinic appointments make sure you mention all problems to his consultant nothing is trivial.Good luck

Hilary

[Lippy42 in reply to Yellowsydney]

Thankyou and yes his kidneys took a hit but moving in the right direction . He now diabetic so were trying to get our head around insulin just another side effect ste developed 🙄 but im sure we will cope .Now ste is more coherent we have had a few giggles about his nightmares and his swearing he been all over the world this last week been in germany in the war drowned on the titanic been in a drug war rescuing his grandson who was kidnapped and then ghe ceiling in hospital was leaking all on his bed ..err no ste you just peed the bed 😂 if you dont laugh you cry and i have cried each night back in my b&b and out of all this i told him you never forgot my bloody phone number did you 3am 4am phone calls . But thankfully we past thst now.Hope your keeping well .😘

[Yellowsydney in reply to Lippy42]

I was on insulin whilst in hospital but they changed it to pills when I came home. Yes you have to laugh. One thing I suggest is get a plastic container for all his medication to keep it all together and lined up so it is easier to manage, I use my old baby box, easy to pick up in an emergency, had quite a few of those.Good luck for tomorrow, and take it easy

Hilary

.

[Lippy42 in reply to Yellowsydney]

Thankyou i now need a baby box 😮 all those pills🙃

[Lippy42 in reply to Yellowsydney]

Just ordered one .omg was not prepared for the bag the nurse handed me

[Yellowsydney in reply to Lippy42]

I had 2 carrier bags full of drugs when I was first discharged, they do decrease after a while. As well as the 2 anti rejection drugs I've also got blood pressure pills, diabetes pills, thyroxine, asprin, statins and this year I've added morphine, mst and amytriptlyn as I've had a few problems. I also keep paracetamol, sore throat, stuff to make me go to the toilet, stuff to stop me going to the toilet all in my box, so I know where everything is. I've also got a big file I keep all my notes/letters in. My kids say I'm a professional patient 🤣

[Lippy42 in reply to Yellowsydney]

🤣👍

[lonmallin50]

Does them nightmare dreams happened to everyone who has transplant I am just been referred for like to let wife know what to expect afterwards

[AyrshireK in reply to lonmallin50]

They are fairly common and I put a link to another old post on Lippy42's earlier thread which detailed loads of other post t/p peoples hallucination experiences.Post op delirium is very common, you've had tonnes of anaesthetic which takes time to leave your system.

Kidneys commonly become a bit sluggish and take time to kick back in (some people need to go on dialysis for a short time to support kidney function. - I was warned during hubbies t/p assessment discussions that he may have tubes coming out of his shoulder/neck area because some folks are alarmed at seeing that). Kidneys when not functioning well means toxins can't be ejected from body which can contribute to the hallucination situation.

PLUS, you are on loads of pain killers (morphine quite often) which can be a bit 'trippy'. Mood can also be affected by the anti-rejection meds, especially the high dose steroids.

It's something that should come up in your transplant assessment chats which your wife should be part of. Certainly something you can add to your list of questions for the t/p team.

Best wishes for assessment, hope all goes well. (Best full body MOT you'll ever have),

Katie

[Lippy42 in reply to AyrshireK]

To be fair this part of post transplant wasnt really mentioned so i didnt expect ste to be so bad .when i have asked this week about it they just said every patient is different and some sail straight through . Any way ste is now no longer hallucinating and no more nightmares and should be coming home on monday . 👍😍

[Yellowsydney in reply to lonmallin50]

No not everyone goes through this, it's just a reaction to the pain killers, usually oxycodone, until you've been there you won't know.Please feel free to join out friendly and knowledgeable Facebook group called liver transplant support uk, if you ask on there you will get some wonderful stories.

Hilary

[lonmallin50 in reply to Yellowsydney]

Thanks

[Lippy42]

One more night then i hopefully get to take ste home on monday along with "dolly"❤️ we decided we wanted to name his liver some might think we nuts🙃but its something we wanted to do . So dolly means gift from god .This will be the greatest gift we have ever recieved and we are forever grateful.