Post transplant

[Jugular1]

I’m🙏Somebody can give me some info from their past experiences, my dad was in liver failure and had transplant Saturday just gone so we are day 5 now and he’s still not awake, first 2 days he required blood products and also something to help increase his bp which has now settled, his sedation is off but he’s still not awake they said they see this sometimes because of the encephalopathy has anybody experienced this ?

[Kristian]

Hi Juglar,

People do recover at different rates after transplant. Its also not that unusual to have low levels of various blood products. During the time of the operation they pretty much replace all, and quite often more, of your body's entire blood volume. It takes a while for your body to catch that up. Indeed its not unusual to require additional blood products after transplant. That was certainly the case for me anyway.

I can't say much about returning to wakefulness i'm afraid. Do take heart though in that throughout all this time he will be closely monitored and swift action would be taken if needed. His medical team will also be very open and honest with you. If they do have concerns they would generally let you know.

Hope his recovery goes well and i send you all my best wishes.

[nutrimar]

It took me 5 days to fully 'wake up' after the op, after complications of a bleed during the operation, renal failure and high blood pressure post transplant. I was in the ICU for 4 of those days.

Everyone is an individual, and each will react differently. He's in the best place possible, being looked after by the best people, and he needs you to remain positive. He'll pull through.

[PeterP54]

Congratulations to your Dad on a successful transplant.

I don't think it is unusual to suffer a hiccup or two on the path to recovery, I know I did. My time in ICU was about two days but my memory of that time is hazy. One of my drains was a strange colour and my blood results were off. They thought I had sprung an internal leak of some sort and they had to open me up again. It wasn't a leak and it all righted itself again. Had another hiccup 7 years after but here I am 14 years post TX. Good luck

[sophiaS1980 in reply to PeterP54]

after being 14 yrs post. i am just curious, do you still have to take all the meds, and do you have to be careful not to catch colds?

[Isabelle2 in reply to sophiaS1980]

Hi

I’m not Peter but generally the meds are slowly cut down. I believe we are all on some sort of immunosuppressant for life. This means we should still be cautious about other infections to avoid complications. People with transplants were told to self isolate at the start of covid for example. Happily I think that being a transplantee hasn’t caused as many problems as being diabetic or asthmatic though 🙏.

Isabelle

[Ironontheup]

Hi all, just to put some balance to this topic, we don,t want to frighten future TP recipients.

I,m now 3 weeks post transplant and my experience went extremely well.

6.5 hour surgery and I was awoken 2 hours later , took phone call from loved ones 1 hour later.

12 hours ICU then moved to general ward .

Walking un aided round the ward 2 days later.

Discharged after 7 days {quite remarkable really, not what I was expecting pre op )

Little discomfort , nothing serious

I have disturbed sleep patterns though.

3 weeks later and i,m going out for steady walks up to a couple of miles every day, quite comfortably.

I know this is probably a very quick recovery period compared to the other posters , but only want to let people know as first poster stated , all recovery times are different , I was fit and strong going into TP , my HCC had not started taking its toll thankfully .

God bless the team at Leeds and my donor and their family ....!!!!

Many thanks and best wishes to all and everyone on this forum you are all lovely people, stay strong ......!!!!!!

[joeburger in reply to Ironontheup]

That's exactly like my experience except I was discharged after 8 days. Everyone was surprised at my recovery. I also had my TP at Leeds.

I was readmitted a month later with CMV and I am still having hiccups with my LFTs just over 15 months later.

I am lucky to have the support from the consultants and transplant co-ordinator at Leeds and my consultants at York and my gp.

Wishing you well on the rest of your recovery.

Lesley

[Ironontheup in reply to joeburger]

Please forgive me , what is CMV ....?

[joeburger in reply to Ironontheup]

It's Cytomegalovirus like cold sores & chickenpox I already had this virus in my system but it was reactivated when my immune system was reduced by my meds.

[Isabelle2]

Hi

I had mine over 3 years ago. I live in France.

It took me 5 days to wake up. I too had HE when I had the op. I was pretty woozy for a few days after but less than 3 months later I flew back to the U.K. with my daughter so I could help her move in to halls for uni! I didn’t get permission from hospital 🤫

If the docs say not to worry I would try not too!

I hope it all goes smoothly from now on. Please pm me if you have any questions.

Isabelle xx

[Jugular1 in reply to Isabelle2]

Thanks x it’s day 7 today he’s waking to the nurses when they ask him questions we got to speak to him today on the hospital phone she said he was nodding that he knew it was us , he then goes back off asleep he’s been off sedation for 3 days and is having no pain relief they are hoping he will start getting bothered by having the tube still in and each time he lifts his hand they think he’s going to the tube he just has a little itch, he’s also gone back on dialysis this morning and still not weeing 🙏things move forward a bit quicker now to at least get the tube out x

[Isabelle2]

I must admit it took me a long time to come round, eat, Know what my bowels etc were doing, walk and generally do the basics. However once I was good it was fine. Unlike some others I haven’t had any complications either - touch wood! Each case is so different.

Izzy

[sophiaS1980]

I guess how well you do depends on your age, can i ask how old are most of you with TP? if you don't want to say thats fine.

[Jugular1 in reply to sophiaS1980]

My dad is 68 was still working up until November and just gone downhill fast x

[Isabelle2 in reply to sophiaS1980]

I was 53 when I had the op