received my new liver

[Bantam2]

it’s 2 days after my liver transplant and today I was signed off icu ward onto the recovery ward who will fingers crossed discharge me in due course. This is of course fantastic news and I appreciate everything anyone involved in this process has done. They have all been amazing.

I am wide awake and can’t sleep as now worried what symptoms would be displayed if liver was being rejected by body despite medication. I can walk around but my stomach feels like it’s been hit by a freight train and it also hurts a bit when I breathe up through my nose. Can’t seem to get a straight answer from anyone at hospital only that I am fine.

Should I still be getting quite a lot of liquid coming out of drains. Nurse said fine as less than last time but I’m not so sure it was the same person although she has done it before. Should I be noting things down for the doctors. No one is checking on me regularly enough for what i would say is a massive operation. How would they know if I had deteriorated.

Anyone felt the same so that I can put my mind at rest thanks

[Kristian]

Hehehe, firstly congratulations, welcome to your new life.

Your concerns are understandable but trust me, even though it may not seem it you are being regularly monitored. Any functional anomalies with the new liver will be picked up quickly from the blood tests they do or other monitoring like BP etc. The vampires used to come in most mornings at stupid o clock to take blood, lol. If you start to feel sick or feel that something is not quite right mention it to the nurses on the ward or the medics when they do come round. Its usually the surgical team that keep you under review for the first couple of months anyway and they'll be looking to spot things quickly and do generally pick up anything abnormal. But, always feel free to mention something if it doesnt feel right to you. If nothing else they'll provide some reassurances if it is indeed just normal.

From a drain point of view, yes you will leak for a while, lol. I even went home still draining. Don't worry though they give you all you need to take care of it and you can get the district nurse to come round and change things over when needed. To be honest though its not that hard and I did mine myself. Appreciate that may not be for everyone though. You'll find, it could take a couple of weeks, it tends to drain more whilst the tube is still in, but once thats removed it doesnt take too long before it pretty much stops, a few days it was with me with a little collecting bag then a few more where a simple dressing sufficed. Dont worry about that though, they'll talk you through it before you go. I must admit it really surprised thats what they did, but apparently that is the common practice and it really is nothing to stress about, its only a relatively small amount of fluid that is leaking by then anyway. Indeed not everyone needs to do that. If they can remove the draining tube sooner then it may have already stopped. I think mine only got removed the day before I was discharged, hence why I was still leaking, lol.

Hope thats helpful and reassuring. Good luck and hope your recovery goes smoothly. Again, if something is concerning you do ask the medics. They will always be happy to check it out.

[Braveheart65]

Honestly, I’m speechless……2 days ago you had the transplant and you sound SO lucid. Walking about!! Bloody hell, it’s 2 years since mine and I still struggle to stand up with such stiffness on my entire right side.

You’re doing AMAZING. They will be checking on you as much as needed, no way they will neglect you after investing so much time, expertise, medical care etc into the transplant then to let you deteriorate. So relax, rest up & go with the flow. Don’t worry about a thing.

Keep doing what you’re doing would be my advice as what you’re doing is astounding! Much health & happiness,

Alicia

[Bantam2 in reply to Braveheart65]

thanks both for your replies. I spoke to liver team this morning and feel much better knowing at moment I am okay and they are monitoring me. Like you say unbelievably that had transplant early Friday morning and was up and about on Sunday to keep chest clear of any potential infection.

It was lovely to see my husband and son look so relieved as I was in good health and only went on the list in may.

I’m looking forward to starting my new life. This forum has kept me sane believe me thanks everyone x

[AyrshireK]

Great news that you've had your t/p and you are now reassured that your team are giving you their fullest and appropriate care and attention. Take things steady, hoping recovery all goes to plan.

Katie

[Bantam2 in reply to AyrshireK]

thanks Katie

[taar]

I think you are doing brilliantly! Two plus days in, walking around, amazing! I had my transplant 3+ months ago. I remember I was expecting to be "out of it" for the first few days, but like you I seemed to be awake almost all the time. Don't forget, hallucinations/ delusions, are to be expected...I had a few of those, really strange. I think you are being monitored much more closely than you realise, and they really are very good, very experienced staff. Please don't worry, I think you are a star!

[Bantam2 in reply to taar]

thanks yes I have thought I have seen things in my peripheral vision that aren’t there. I’ve told my husband I might be confused with some of side effects of medication but he says I usually am normally so not sure how me telling him that helps lol.

Did your stomach swell up when you had had your transplant. Mine has done but liver consultants assured me that it is just a reaction to the operation as I am quite small. The MRI scan also confirmed everything was in order.

Wish you well too

[taar in reply to Bantam2]

Isn't it wonderful to have the wit and support of a loving husband...I have one running the same lines! I am 65, so a bit older, and am bigger build, so didn't notice swelling. I lost about 3kgs soon after transplant, but I had some initial problems with appetite, despite trying really hard to take in the necessary nutrition. I still think I am quite swollen, as you say, probably just the body healing internally. I said to the consultant about 6 weeks, post, "I see the wound is healing nicely. How long will the inside wounds take?" She said, Oh, months and months...

I really don't think you should worry about rejection, leave that to the medicos, and I don't think there is anything you can do about it anyway. (But I don't know! Similarly I don't know how common or rare rejection is anyway.) I have to say also, I have found recuperation more difficult that I had expected, not the transplant, which has gone very well, but the side effects of medication, sleep issues, bp, cramps, twisting fingers etc etc. But every day IS a bit better, I promise.

[teletonetapper]

My oh my - what an amazing person you are. So positive and your post will be an inspiration to other members. Well done - I think you will be looking after others on the Ward this morning by the sound of your story. Please take care, you are remarkable. Thoughts to you and your family. A brilliant life ahead hey.

[Bantam2 in reply to teletonetapper]

thanks, think the real battle begins now to avoid rejection. But it’s all in my hands. Hopefully I will find out too whether the liver damage was caused by PBC or alcohol. I never had a problem giving alcohol up so actually hope it’s that despite the stigma it attracts rather than PBC which will live along side me regardless of a new liver.

Thanks for your kind words and wish you all the best xx

[Yellowsydney]

At 2 days post I couldn't even hold my phone let alone type all that you have, couldn't focus my eyes for a week so well done. Don't worry about rejection, leave the doctors to worry about that. I still had fluid coming out of drains on day 15 the day I went home..If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk.

Hilary ❤💚

[Dogbot]

Hi Bantom first congratulations on your new liver still waiting for mine, and don’t worry about the nursing they are keeping a very close eye on you but they won’t want to give you things to worry about. So relax get better and enjoy 👍😀.

Stay safe All

Dogbot 🐶🌈

[Bantam2 in reply to Dogbot]

Hi thanks. Was discharged today and at home in total peace and quiet, with my springer Sherlock. Bliss. Decided to not Google anything about post transplant problems and just use the information I was given by the Liver Consultant. I’m back Friday for bloods and then every Tuesday for a while. As you say they can identify any potential problems from my blood tests.

Take care and I hope you receive your liver soon 😊

[Dogbot]

That’s great news, it doesn’t matter how they say now get a good nights sleep when you’re in hospital that’s practically impossible, there is nothing like your own bed and home to relax. Good luck and I hope bloods go well 👍😀.

Stay safe All

Dogbot 🐶🌈Dave

[Bantam2 in reply to Dogbot]

🤗 thanks