Help

Hi everyone as you all know my hubby needs a liver transplant . He's going in next Monday for the assessment he will go Monday Tuesday and Wednesday. Can some one tell me what they do for these days? Also when will he go on liver transplant list . My heads going crazy over it all . Thank you debbie x

[AyrshireK]

My hubby went through the transplant assessment at Edinburgh in June 2014 - although all centres do it slightly differently the tests and procedures are pretty much the same from centre to centre. Our experiences during the assessment week are detailed on my post - healthunlocked.com/britishl...

The assessment will thoroughly examine your hubbies liver and gauge whether transplant is needed and how urgently PLUS they will thoroughly assess his overall health to ensure his heart and lungs and rest of his body is actually fit enough to get through the procedure and recovery period.

You'll meet the whole transplant team from the co-ordinators, consultants, surgeons, anaesthetists, dietician and sometime social workers & psychologist.

At the end of the assessment the whole team attend a multi-disciplinary meeting where they discuss all the results from the week and see if transplant is a viable option. The one thing which does seem to differ from centre to centre is when and how you get this result - at Edinburgh assessment takes place from Tuesday to Friday with the big meeting on the Friday and the feedback and listing decision given then prior to discharge from hospital. Other centres give it later or by telephone and then hold education sessions afterwards.

What centre is your husband going to?

Are you going to attend the assessment too? If your husband struggles with interpreting med speak it would greatly help if you attended. I spent the full week there with hubby (apart from the medical tests bits). We asked at the start how much of the time I could be there and it was actually encouraged that you as the partner/carer attend too as you will both have the restrictions of the wait and you need to know the ins and outs of the procedure.

Hope that helps a little, best wishes.

Katie x

[Hidden in reply to AyrshireK]

Thanks Katie . He's at addenbrooks Cambridge. I can't be there as we have three kids and need to get them to school but am hoping to get over there for a hour or so as it's about a hour drive xxx

[Denise15 in reply to Hidden]

I had my assessment and subsequent transplant at addenbrooks. Don't worry all will be ok and he'll be treated like a king they are lovely there. Xxx

[Hidden in reply to Denise15]

Hi how long did you wait after assessment and go on list xx

[Denise15 in reply to Hidden]

The same day as assessment ended- waited 7 months to transplant xx

[vulnerable in reply to AyrshireK]

Very informative Katie & useful for me at present as I’m going through pure assessment. I’m becoming embarrassed at asking questions about the Transplant process and this forum is particularly useful for me.

I had my cardio Pulmonary fitness check yesterday- only managed 10minutes but they said it was an improvement on last years????!!!!!

I have noticed that I am very jittery & shaking uncontrollably in the mornings -any ideas on cause? I’m not diabetic.

[AyrshireK in reply to vulnerable]

Do you have asterixis? It's a symptom of Hepatic Encephalopathy where your hands flap uncontrollably. OR it could be down to the fact you've just had that long night time fast with no food and you are running on empty. You must have a carb rich supper before bed to tide you over till morning.

As part of your T/P assessment you should see a dietician and this is one thing they'll explain re. fuelling.

Katie

[vulnerable in reply to AyrshireK]

Yes Katie. I was thinking it was because of long fast in the night. Problem is once I’ve had dinner I don’t feel like eating again that night. I will try cereal? Perhaps before sleeping hopefullly will improve. No it is definitely not ‘Liver flap’ thank god.

[AyrshireK in reply to vulnerable]

The importance of supper is highlighted in diet advice we got from t/p clinic.

Bedtime Snacks

You will need a large bedtime snack containing carbohydrate for your body to use overnight as it is a long time until breakfast!

You should aim to have 50g of carbohydrate in your bedtime snack; this equals 10 carbohydrate points.

Choose your bedtime snacks from the table below and make sure your food adds up to 9 or 10 points.

FOOD CARBOHYDRATE POINT

200 ml Milk 2

300 ml Milk 3

Horlicks/hot chocolate (made with milk) 3

Fortisip / Ensure Plus 7

Fortimel 4

Fortijuice / Enlive 10

Build Up 7

1 Slice of bread / toast 3

Jam – average spread on 1 slice of bread 1

Breakfast cereal with milk 6

1 biscuit 2

1 chocolate biscuit 2

1 cracker / crisp bread 1

1 packet of crisps 3

1 packet of rice cake snack 5

1 rice cake 2

1 banana 4

1 apple / pear / orange 3

1 slice of fruit cake 7

1 slice of plain cake 6

1 slice of Swiss Roll 4

1 scone 5

1 tea cake / toasted muffin 6

1 slice malt loaf 3

1 crumpet 3

1 Scotch pancake 3

1 flapjack 4

It's like weight watchers in reverse.

Katie

[vulnerable in reply to AyrshireK]

Thankyou for going to all that trouble it is much appreciated Katie.

[AyrshireK in reply to vulnerable]

No trouble - copy and paste from documents.

[vulnerable in reply to AyrshireK]

X will do. One more question before I go.

Regarding pre-assessment- I’m in N Ireland and all tests have been done at my Liver Unit. Cardio/Pulmonary exercise test being the final one yesterday. I’m meeting with Professor from Kings next week (here in Belfast) as part of the Transplant process. Does this mean I will still have to go through all of those tests again at Kings College????

My Liver & multidisciplinary team are excellent but I feel so embarrassed by constantly asking questions. Thanks again Katie

[AyrshireK in reply to vulnerable]

You must ask questions of your team, they know what a terrifying process it all is and they want you to go into it with full knowledge. I don't know how the Kings assessment work, you might be in a different situation with being over the water and that the tests they've run so far have probably been co-ordinated with Kings so they know what your overall health is before you go over there to have the proper assessment. I wouldn't know whether they'll repeat these tests or whether its probably Kings that have ordered them locally so it's less to fit into your assessment in London.

Write any questions you have down for the Professor and ask them. As i've said before, every appointment we go to we take a list and doctors have always been open to answering them all. It's your health and you have to take ownership of it and make sure everything is done to give you the best possible outcome. There is a LOT of talking done at t/p assessment.

Wishing you the very best of luck,

Katie

[vulnerable in reply to AyrshireK]

Many thanks katie

[LAJ123]

Hello Debbie,

Kate has pretty much said what will happen.

I'll add my bit.

I had my transplant at the Royal Free in March 2016 and my assessment about three months before that. As well as the three days, I had to undergo a few further tests and assessments and had to wait for a while before being listed. I was informed in a phone call and then I waited two weeks before getting 'the' phone call.

I think the first thing I would add is, prepare to be exhausted. It was definitely hard work, especially the stress echo-cardiogram and the respiratory function tests. Definitely no time to get bored. I was put up in a nearby hotel and my partner stayed as well. I was given a very detailed and full schedule for the three days and I was expected to be at the right place at the right time.

Then came the 'education' session, where, with my family and partner, I attended a meeting with a transplant coordinator. We were then taken through just about everything involved in the transplant process. This was extremely important as the transplant team had to be confident that the right level of support was going to be in place when discharged home.

Try to relax and take each day as it comes. I found the three days very tiring but quite interesting and I learned a lot. We left the hospital happy that I was going to get excellent care from the whole team.

Take care,

Jim

PS

Are you aware of this ?

alta.org.uk/index_files/Pag...

[Hidden in reply to LAJ123]

Thanks yer he's staying over for the two nights . Thank you for reply . This site is so good x

[vulnerable in reply to LAJ123]

As always Jim very informative post great for me at present. Is it ‘normal’ to be jittery and shaky on waking?? I’m not diabetic.

[Hidden]

Thanks guys for your reply . Just another thing did you have embolization before transplant to slow the tumour down xx

[Dorset123]

Hi Debski,. I had my assessment & TP at Kings. There was a lot of waiting around over the three days along with lots of tests etc as others have said. Tell hubby to take a good long book!!

It's a tiring thing but very 'doable'

Best

[Hidden in reply to Dorset123]

Thanks love x

[cazer]

which hospital? as they vary a bit. im 4 weeks post txp at q. e. so you can ask what you like.... cazer

[Hidden in reply to cazer]

Hi love he's going to addenbrooks Cambridge what does txp mean lol x

[cazer]

sorry just read rest of feed.... qe is couple of days of physical tests.... ecg.... ultrasound etc to check suitability for operation. then if all okay with tests you go for couple of days to meet anaesthetist transplant coordinator etc. also we met a transplantee. it was tiring but informative... nothing to be worried about.

good luck. try not to worry about it... i found it fine despite being exhausted. xx cazer.

[cazer in reply to cazer]

sorry... transplant

[Hidden in reply to cazer]

Oh my hope u feeling ok and not in to much pain . Sorry to pick your brains but really can't get my head around it all . How long did you wait for a transplant. Xxx

[cazer]

only 6 weeks... cant believe it... thought i would wait a long time as am o+blood which tend to wait longer!!! out of 6on assessment 1not needing transplant, 1further tests and 4of us all transplanted. not sure what happened but very grateful for the chance of life.

cant say it doesn't hurt but.... moving around walking within a few days!! they get you up and about after a short space of time.

emotionally very much all over the place partly because of the quickness i think. ask away with questions its no problem. best wishes cazer.

[1football]

Hi,

I am also at addenbrookes and on the waiting list,have been for 6 months now.

The assessment itself is very straight forward,you will be given a plan of what order & times your tests are due & kept very well informed.none of the tests are intrusive and fairly pain free except the oxygen test taken from blood in back of wrist ( I don't like needles),was told I was suitable for transplant before discharge.

I've had abilation and embolisation (twice) since being on list to slow down growth of tumours.

All the consultants & nurses are fantastic & if you have worries or questions they are always ready to help as is everyone on here,

Best of luck to you both

Huw

[Hidden in reply to 1football]

Hi sorry ment to ask you how did you find the embolization and abilation did it hurt? . Has these procedures slowed down the tumour? Have they gave u a time as to when they think u may get a new liver ? Hope u feeling ok x

[1football in reply to Hidden]

Hi

Abilation I was put to sleep, recovered really well & went home following day, but I was very tired for around 2-3 weeks but no pain.embolisation your awake as they go through your groin but again only had discomfort while they did it & took around a week to feel i was over it.

As for waiting it's a case of trying to stay positive . But just got to wait

Huw

[1football in reply to 1football]

What consultant is he under?

[Hidden in reply to 1football]

Don't know his consultants name ? Used to be a little guy . Or bless ya ya wilL Probably get that phone call while u in bed . Thank you so much for replying feel like I'm getting to know so much off you all xxx

[1football in reply to Hidden]

Welcome anytime