Liver transplant initial assessment in approx 4 mths time at Kings College Hospital London

[1ily]

My hubby has received an appt letter for his liver transplant inital assessment at Kings- London. Please could anyone who has been through the Kings assessment in the last 2/3 years share your experience please. ( Polite point: We don't do social media so won't be able to get support from the Facebook support gp at this time).

A few queries:

1st : We know numerous tests will be completed because we have read the really useful info on this website, but the info is general - applicable to all UK assessment centres - and not Kings College London, specifically. Please post about your experience as a patient or their partner.

2nd : My husband is walking for 40 mins to 1 hour each day and does about 20 mins exercises dauly (given by a physio to help to build his physical strength). We want to know if there are other things he should do in prep to help him pass the assessment. Eg building lung capacity?

3rd : The info sent by Kings in the appt letter says he has to record everything he eats for 3 days before admission ( he is to be an inpatient for 4 days) - we are not sure why is this being asked- there must be a good reason?

4th Thank you in advance for your patience with our questions. God bless!

[AyrshireK]

Hi there, hope all goes well - the food diary bit will be to gauge what his food intake is like so that dieticians can advise on where there are potential gaps in his intake. Although we were never asked at Edinburgh to keep a food diary I did one and it helped show dieticians that although hubbies intake was good it was actually insufficient to keep his weight and muscle on and they had to introduce supplements and eventually n/g feeding. Sadly towards his transplant my hubby was unable to eat at all and post transplant in hospital lost a further stone in weight to it's important they have the information to do a thorough nutritional work up.

Katie

[Porcupine_Tree]

Hi 1ily,I was at King's in early Jan for a 2nd opinion Liver Transplant assessment. I was in Cheyne Wing on Todd's ward for four nights. I, like you was asked to fill in a 3 day food log. I guess they are looking for protein intake and general food amount. I handed mine to a dietician who was talking to a chap in the next bed. I didn't see anybody face to face.Not sure why..

Anyway the first thing I must say is that I was really well looked after by the nursing staff. Nothing was ever a problem and they kept me well informed about the day ahead.

Any way procedures included CPX (cycling on a stationary bike) for 10 mins or so . They are looking for recovery times. Lung function , lots of blowing; ECG ; Echocardiogram; CT head; CTCAP ,pelvis; Abdo; Thorax. Discussions with Liver Coordinator, Anethatist; Liver Surgeon; Intensive care Cardio ; several Registrars to answer your questions. I had two outstanding tests EP Study and CT Coronary angiogram. These I am having done at my local hospital. Results will go back to King's for their MDT from which I will be told whether I can go on the list. Most people will get a call at home on that Friday to confirm or otherwise.

Re excersise you are doing the right thing I.e walk every day; excersise I.e low weights but regularly. Plenty of protein such as cottage cheese, chickpeas; chicken ; eggs; protein bars; renapro shots; obviously fruit and veg. Don't worry about a bit of fat it is part of a good diet. You will receive loads of information get ready to take notes.. NB Listen lodges accross the road are available for family, apparently free.

Good luck and I hope you receive your desired result.

PT

[Oldbits]

Hello, I went with my husband to King's in July 2021. They were very lovley and supportive. Like you I hadn't a clue what to expect. We had NHS accommodation in a flat just 5 mins walk away. All single bed rooms with en suite and shared kitchen. There's a m&s on hospital site but the flat had cereal, tea coffee and bread supplied for breakfast. They wanted us there for 9.00am so we had to stay night before assessment, we stayed 3 nights. We did the assessments with 2 other people and their partners and got to know them. In fact I'm still friends with one couple. They had come up from Devon! The days are long and tiring with a lot of sitting about, so take a book. They gave us a lot of info and the timings of appointments when we arrived each day but we had to find our own way about the hospital site ( it's huge). Your husband is doing well with the exercise, we were told that it's essential for recovery and the fact that your under anesthesia for a long time so they needed to know how well you can recover from that. My husband was most worried about the fitness test and the dr said ...your ill, we don't expect you to run a marathon!

The food diary is so they can see how well he is doing with his intakes of essential foods, again for his strength and ability to recover. Also if he might need support for this during the waiting time if he is offered a transplant. If they feel that you would need advice (and really some people don't have a clue about healthy eating or have other medical problems) they will refer you to dietician.

They really didn't seem to mind my copious question asking and note taking. There is also a mental health assessment, which we didn't expect.

They gave us a decision within a week of the assessment. I cant reccomend kings highly enough, they were fab

Good luck

[Oldbits]

Me again...they did ask us when he'd last been to the dentist.... wasn't expecting that question. So if he hasn't been recently, best get a check up before you go. X

[AyrshireK in reply to Oldbits]

Good call on the dentist question. When hubby was first assessed in 2014, Edinburgh sent us a letter beforehand asking for a clean bill of health from dentist - hubby hadn't been since childhood (fear of all things medical) and so we had to hurriedly register with dentist and get a check up - initiating loads of deep cleans, extractions of wobbly teeth etc. Big risk of infection from poor oral health also we were warned at his t/p last year that they may dislodge some of his remaining wobbly teeth (they didn't infact).

Katie

[1ily in reply to AyrshireK]

Didn't think about the dentist- we will get onto this! My husband went to the dentist last November and had a tooth extracted. We need to book another appointment for a clean and check up.

[1ily in reply to Oldbits]

Thank you for your info - much appreciated!

[Huggy7614]

Hi, just to add to this re exercise. Having been through transplant, get yourself as fit as you possibly can. Everything and I mean everything is a real struggle for the first few days in particular, and the fitter and stronger you are the easier it will be to sit up!!!

I certainly wish I had built up more before - but I also know just how difficult that can be!! Good luck to you both. Andy.

[Chrisjohnsy in reply to Huggy7614]

Hi, can I ask how you are post transplant. Im 61 and had a liver disorder for 30yrs. Almost died when my biliary duct was blocked with gallstones. What can you do post transplant. Can you live a full and active life? Thanks, Chris

[Huggy7614 in reply to Chrisjohnsy]

Hi Chris,

I’m nearly 6 years post now, and live a completely normal life - other than blood tests and chats with hosp’s every now and then!!

I work full time as an electrician, go to the gym 3 times a weeks and chase my 4 yr old grandson around the place.

I do now have high blood pressure, believe caused by the immuno suppressants, but that is kept in check well. Guess I’m a little more tired these days, but not sure if that’s the transplant or just reaching 60!!

Life is good. Building muscle back after was hard , but I now do that at the gym and that works well.

Andy

Any further questions just shout.

[McEwan1962]

hi, I had my transplant assessment at my local hospital and then to King’s to meet the team for the final assessments.

They take a huge amount of blood. I wasn’t at all impressed with the food, and there was a lot of sitting around. Take plenty to keep you amused. Take earplugs if the noise annoys you and an eye mask if the light annoys you. Have questions written down you want to ask and as they do tend to lapse into jargon, don’t be afraid to ask them what they mean.

The food diary is to see if you need to make any changes to your diet. I was eating salads etc and should have been getting more protein. I was recommended to take more of the supplement drinks. Exercise is good, but they want you to be careful about not losing too much muscle strength so it’s finding a good balance.

I’m 5 years post transplant so things may have changed a bit. I hope it goes well🙏👍

[1ily in reply to McEwan1962]

Thank you for your reply and the info about the ward noise and constant lights. Lovely to hear that you are 5 yrs post transplant. We are hoping my husband is accepted and we don't need to wait too long for the operation but we are aware that we may need to wait many mths or years. Much appreciated.

[McEwan1962 in reply to 1ily]

I hope the assessment goes well. I tried not to overthink things and just ticked off each part as it happened. The team are lovely, caring and want to do the best they can to support you through the process. Stay positive 🫂👍

[1ily in reply to McEwan1962]

Thank you!

[Robert1981]

hi, I see you’ve put in the title that this initial assessment is in 4 months - is that really the wait time? Sounds a long while?

[1ily in reply to Robert1981]

My hubby, is being treated in another hospital but the assessment for Kings which is as a 4 day inpatient so the decision about transplant can be made by the King' s liver centre - hopefully by mid-June. We are grateful to get this appt since Kings is very busy so we are very grateful.