Liver Transplant - Kings - anyone with recent experience?

[Kimlescam]

Hi we went for our education session today and we seem to get different advice depending on who we talk to.

The Consultant said waiting times for blood group A would be 4 to 6 months but today the transplant co-ordinator said it was 6 to 12 months which is quite a difference.

Again the consultant said the operation would take 8 - 12 hours but today we were told 4 - 6 hours.

So - very confused so not sure what to expect.

Has anyone else had a recent transplant at Kings and what was your experience.

Not complaining at all about the staff - we have been treated with nothing but respect and help but just confused about conflicting advice.

My husband is blood group A - has had Ascites drains and has had one year of banding. Recently suffering from hepatic encephalopathy and seems to be getting worse quite quickly.

he still tries to work part time but has had to have 4 months off this year due to ill health.

Would love to hear from anyone.

Many Thanks

Kim

[Hidden]

Hi Kim

I had my transplant at King's last December. Blood type A Positive, was told it would be 4-6 months too but luckily had it done within 5 weeks of going on the list! 😊 Got 4 calls in the mean time so don't be disappointed if it doesn't happen on the first go. Surgery lasted around 5 hours I think but obviously it can vary massively depending on any complications that may arise.

Very impressive that your husband is still managing to work, I couldn't really function for the last 4 months leading up to the transplant but could just about manage driving.

The transplant team have been and continue to be amazing, trust me, your husband is in good hands. However, the aftercare, especially for the first 3 days after the transplant when I was most vulnerable, was diabolical! Some nurses just didn't care and seemed to do so only when bosses were around. Absolutely disgusting! Don't get me wrong, most of the staff were lovely, but the ones I had the most contact with, not so great. Obviously with all the drugs that give you post transplant, I wasn't exactly myself but I didn't feel I was horrible to them. Maybe I was just unlucky. I was in the hospital for 12 days altogether.

I would have happily paid £1000 a night not to have been put through that. Food is crap too and they wouldn't let my wife heat up any food she'd bring from home. It's ok once up and about as there was a nice canteen on the ground floor I was eating in everyday. Shame it's been replaced by an M&S now.

Sorry for the rant but it's the only thing that spoiled an otherwise extremely caring experience.

Wishing you both the best of luck!

K

[Kimlescam in reply to Hidden]

Thanks for the info K and hope you are managing to keep well. We haven't had much experience with many of the nursing teams so hope my husband has a better experience.

He is only living to work at the moment and can do little else after going into the office 3 days. I think it may have to stop soon as he has been told not to drive at the moment.

I hope ours is as quick as yours as not looking forward to the waiting.

Good luck and once again thank you

Kim

[Hidden in reply to Kimlescam]

Yes forgot to say since the transplant I've been feeling amazing. I'm still not 100% and don't think I ever will be, at least not as long as I'm taking Advagraf but the difference to before is staggering! It truly is a new lease of life and I'm so thankful to the transplant teams who perform these modern day miracles and my hero, the donor of course.

Hope you get that call very soon. Thinking of you both, K

[Kimlescam in reply to Hidden]

Hi K

Hope you don't mind me asking a further question. We have received an appointment with the surgeon to discuss the transplant and sign the consent form but this is not until 12th December 2017. Did you have the same experience and does this mean that we aren't really on the list until that meeting. We were phoned last Friday to say that we were on the list so a little confused still?

Thanks

Kim

[Hidden in reply to Kimlescam]

Hi Kim

You're on the list as soon as you sign the form after the education session. I received the first call 10 days after signing. I'm not entirely sure what the meeting with the surgeon was about but in my case, he looked at the different scans and said he was concerned about something and we'll try to get this done in a few weeks rather than a few months. I'm guessing my situation at that point was more critical than initially established. This appointment was after the first call so rest assured, if a liver becomes available, they will call right away.

Again, best of luck to you both.

K

[Dulux]

I had my Transplant at Kings in August. My operation was 8 hours due to taking longer to get liver out due to issues and having to make a roux en y loop.

The wait time can vary and is dependant on so many factors, take all lengths with a pinch of salt in my opinion. Be ready from day one, but don’t stop living life, if he can go to work then let him, I was at work when I got the call. If you let anxiety drive you then it will be a living hell waiting for a call, there will be tines when it will get you down and other times it won’t enter your mind, I was listed for a year before my Transplant as i an blood group O, I was advised a 12-18 month wait. It’s not the ritz on the ward, the nurses are okay, the food is better than a lot of other hospitals and you get a whole menu to choose from, the toast is always cold at brekkie and the coffee isn’t like any I’ve ever had, but there are other food options, my co ordinator offer to get me food if I wanted, but in the first few days food is the last thing on your mind. I hope you get the call soon.

[Beture47]

I had my transplant at Kings and all the staff were amazing

the food wasn't brilliant but that's a small price to pay for being a live

Good luck with the transplant xx

[Kimlescam in reply to Beture47]

Many thanks x

[Fishwick]

The timing discrepancy could be down to whether the patient is suitable for a DCD donor or has to wait for a DBD donor.

I remember the same discrepancy. The fact is, you don't know, but be prepared for any eventuality.

[Kimlescam in reply to Fishwick]

Many thanks

[Dorset123]

Hi, I had my transplant at Kings a year ago. Also group A I was on the list for 2 months & had one false alarm before the real deal.

Don’t worry about the consent meeting, it will not stop you getting the call.

My op was 8.5 hours..also had Roux loop like Dulux.

Most staff on ward great...all under pressure. Food awful....chicken pie my favourite!!

Recovery really starts when you get home!

Keep positive...there is a light at the end of that tunnel!!

[Kimlescam in reply to Dorset123]

Thanks

We seem to be having a few setbacks at the moment so just hoping it all gets sorted - hope you are keeping well.

Kim

[Dorset123]

It was a very bumpy ride for us too. That light can look pretty dim at times. Keep strong & it will start to get brighter! HONEST