Well day one has been a busy one if a little taxing too. We arrived at Edinburgh at 10am and went up to the ward, no beds available so put into a little lounge along with another chap and his wife (fella was also in for a transplant assessment). Lounge was roasting hot and a bit unpleasant but we all got to know each other then got joined by a family - ladies hubby had got the call at 2.30am to get his transplant (having been listed for a fortnight). It ended up being a good trading of information about what the assessment week would entail and what getting the call would mean. Learned more in the waiting area than we did for much of the day.
Anyway, Hubby had a canula in and we waited a bit, he then got whisked away to 'vascular' where he did the exercise bike test with lung and heart monitoring, also had a heart scan (ultrasound type thing) and an ECG. Chat with transplant co-ordinator (eventually) about what the week would entail. Arterial blood gas taken, swabs of nose, throat and groin (for MRSA etc). Urine test. Met another of the liver consultants who will be doing the ward rounds this week and will be on the final decision panel.
Sadly hubby missed lunch so we had to chase up a sandwich for him, missed the tea trolley on all its passes as we were still in the lounge waiting for a bed. Wasn't offered an evening meal till we pursued it and it was given to him on to eat from his lap in armchair - very uncomfortable. Missed tea trolley again. Still sitting (alone) by now after 5pm in the lounge which was roasting, no drinks offered (had to go chasing all the time). It was a hot and tiring day and hubby generally naps in the afternoon so by tea time he was starting to get a bit frayed and upset so I had to go and politely ask again if a bed had been located for him. We eventually got one and he managed to eat his tea at his bed.
All in all a busy day with the bed issue being a little upsetting, we don't want to moan or be impatient but having a very poorly liver patient in a small, over warm airless lounge with nothing to eat and drink offered (until asked about) was a bit much. Anyway he has a bed now and hopefully things will progress some more tomorrow and he might be able to actually lie down and rest between 'activities'. Basically they come and get you from your bed for the various tests, interviews, procedures etc. whenever they can grab you. He was meant to have a CT Scan this afternoon which hadn't happened by the time I left the hospital (shattered) at 6pm though it may still happen tonight as there is so much to fit into the four days. Should know the decision around 4pm Friday.
I'll let you all know how it goes.
Katie
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AyrshireK
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Thanks for the update Katie. I was hoping you would post today.
Sadly I have had many many MANY hospital stays with my son and I have experienced pretty much what you describe with regards to the hospital environment.
But...fingers crossed for you both at this time. I will keep you in my thoughts. You are such a support on this forum.
Thanks Jo Jo, I will have to mention it to the transplant coordinator at our next face-to-face for the sake of others following us as it was totally inappropriate and no doubt hubby got dehydrated and even more frazzled by it all than he needed at this stressful time. He phoned me quite upset after 10pm as he hadn't even got a jug of water at his bed side but I did urge him to ask for one, he'd had to ask for a couple of paracetemol because he'd developed a headache.
Anyway I will not winge, he's there for a very important reason and hopefully things will go more smoothly now he has a bed to at least retire to between tests etc.
I'll go and rejoin him about 10am and see what today brings.
Hi it really was traumatic, all that waiting around I honestly did not know that an assement was so involved that you had to stay in hospital as well, hope everything going OK and things going well for you both, all the best. Angse
Hi Angse, yes he'll be in hospital until Friday. Loads more tests still to do including - CT scan, some people also get an MRI scan, an endoscopy (should just be the camera), chats with dietician, social worker, doctor, surgeon, psychiatrist, transplant co-ordinator again and more. Some folks also have to have a biopsy but hubby had one only a month ago at the SLTU so doesn't need another. Loads more blood test likely and other stuff. They do warn you there is a lot to do and a helluva lot to take in during four days especially when you feel at your worst but the assessments main job is to check that a) transplant is warranted, i.e. you need one either now, in the future or can they treat any other way & b) to ensure you are fit enough to get through the major operation or more importantly can get through the recovery period & that there are no other problems unlinked with your liver which may cause issues. They have to ensure that the benefits outweigh the potential risks. Doesn't matter what you say as the end decision is taken on a mathematical based formula of your different liver chemicals, blood results. The rest of the tests are to see that you can get through the transplant operation and recovery.
Anyway, we hope nothing untoward comes to light and that we will hopefully get the chance of a new life with a new liver if the decision goes that way on Friday. I can't see any other issues and his liver is 'goosed' or 'burnt out' as his consultant has already said so I don't think they'll come up with an alternative plan.
Will update further as I think it is useful for folks to have an idea what the assessment week brings.
Hi Katie, good luck with all your assessments this week. My mum goes into Addenbrooke's on Sunday evening for the same tests and this info is really helpful as to what to expect. Do you get the decision at the end of the tests? I want to make sure that someone is with her so that we can cope with it if it is bad news. I hope everything goes well.
It is best if you go with her and see what input you can have in the week, I have asked if I can basically be there all the time so I can help him with his hearing and understanding and contribute where doctors and others need me to. We had all the team round the bed this afternoon and learned some results of the CT scan which I wouldn't have like hubby to have heard alone and we managed to spend some time afterwards discussing it. They want me there for all the 'educational' sessions as it goes into the preparation, the procedure, the recovery and aftercare. Decision day for us is Friday and we should hear the full decision around 4pm Friday afternoon. It differs from centre to centre so perhaps best to meet with your mums co-ordinator and see what role you can play in the whole thing.
Sadly this sounds all too familiar... Been for transplant assessment three times and each time I've been sat in same lounge all day till early evening. One time I even spent the night in one of the rooms set aside for parents of prem/sick babies. Having said all that staff have always been wonderful. Occasionally things don't go to plan because of emergencies etc. Hopefully by the end of the week you will have the good news that your husband has been put on transplant list. Good luck and best wishes. Xx
Hi, we live in Birmingham & my husband is under the Queen Elizabeth. John had a one day assessment (tests) followed by a further 2 days few weeks later as an out patient. A few people were from South Wales & Liverpool, they were staying locally. Long days, & a fair bit of hanging around but got to chat with others. We were looked after very well. Help ur self to tea, coffee & biscuits all day. Sandwiches etc for lunch. Its been a roller coaster. When we saw the surgeon he implied possibly weeks rather than months. Johns UKELD was 61 (putting him on priority list) & he is group B. We were shocked & excited all at once. However dentist a few weeks ago said john has infected wisdom tooth. Has to be done in hosp. because of liver disease. We got call on 6th June to confirm J going on the list. However he has to have tooth removed first & a course of antibiotics. Difficult times as still waiting to hear when this will be done. Obviously very, very relieved that he will be going on list. Just want tooth sorted asap.
Wishing you both all the very best & hope you get good news on Fri.
Gosh that brought back a few things. I was at Leeds and the wait for a transplant was almost 7 months and I felt like a ticking time bomb. Every time the phone rang I jumped I was literally a nervous wreck.
My assessment which was carried out in May last year was absolutely wonderful and I met some truly inspirational people. The tests were hit and miss and because the xray,ct,scan,etc had to deal with emergencies first you would end up being called at all sorts of unusual times. What annoyed me most was that the times were always changed and no-one would tell me anything, usually the patient trolley would just turn up shout a name and off you went to have your tests. Most times it meant missing out on food/snacks and then trying to get someone's attention to see if there is a sandwich somewhere or if a cuppa could be made. Luckily I felt fit as a fiddle at the and did most of the shouting/grabbing nurses attention myself and for the other patients too. I Wasn't from anywhere near Leeds and took with me a small suitcase full of things like biscuits, crisps, chocolate bars, lucazade bottles etc and this was empty on my return home.
I really pray to God that it won't be as bad as that first day and that it will all work out for you and your family.
If you want to ask me anything please feel free. I will be honest about things from a patients perspective.
Hi. Seems a bit like and miss of a day you had. My assessment was done over 3 days. All my test were done in one day then I was sent home then done the other two days two weeks later after the results were announced. No bike ride or anything like that. At least you now have the ball rolling, I wish you both all the best and hope that you have a happy outcome.....
Hi. Prior to my tx I got told I was to fit for the op. I have a very physical job so that helped me. It sounds that different hospitals do things slightly different, maybe it is about time it was all made into one routine. Another factor may be is I live within 5 miles of the QE.
Well Day 2 is over. I joined hubby at the hospital at 9.30am - he'd been a little dehydrated after yesterday and this showed in him getting a headache last night and in urine test this morning.
By the time I joined him he'd had 12 different vials of blood taken and provided a urine sample. Just after lunch he got taken for his CT scan with contrast and then came back to the ward. A bit later a call came up for him to go to the respiratory lab to do his lung capacity tests and rather than go down with a porter I was allowed to walk him down and he passed that ok and it all sounded good. Back on the ward we suddenly got surrounded by a small army of doctors, surgeons - must have been 10-15 of them at least. Consultant asked hubby to summarize what he thought was the main side effect of his liver issue and he explained about his sleeplessness, fatigue, lack of drive etc. and they then asked me about my take on hubby's level of concentration etc. One of the doctors suggested starting hubby on rifaximin along with his lactulose to try and help with this probable early hepatic encephalopathy. They then went on to discuss the early report from the CT scan - although they didn't have the full details. They have found something they didn't expect too in that they have discovered a rather large aneurysm in the splenic artery. A surgeon who was at the bedside said it will most likely need treating by tying it off - a small one may get left but this one from initial glances of CT report looks rather big, a burst of this would most likely be fatal. It could be treated at the same time as transplant but there would be major risks to this, he didn't want to go into full details without the full CT report and discussion with radiologist but it looks like they will probably have to treat this sooner rather than later. No doubt we will find out more when the surgeon has all the facts and hopefully if hubby does need this procedure he'll get it and still be listed it's a bit of a waiting game.
Tomorrow he has an endoscopy using the camera - as recently his consultant has only been using the bander and not the camera first so she needs to have a proper look through. We've an appointment with the transplant co-ordinator tomorrow afternoon and we've still to see the psychiatrist and dietician etc. On Friday there will probably be more 'education' type stuff with the decision being discussed by the multi-disciplinary team on Friday afternoon and we hear the decision after that.
Early night tonight as tomorrow is going to be another long hot day.
Rightyo, Day 3 update and it has been another busy day. Hubby went for his endoscopy first thing today (7.45am) and his own liver consultant did it. Of late she has only been able to pass the banding tool but today she needed to do the camera all the way through oesophagus, stomach and duodenum. He had that and it all went really well. No major causes for concern (back in 6 weeks for doctor to do her routine endoscopy and any banding). I joined hubby on the ward after 10.15 or so and we sat chatting. He was wide awake even after his sedation today. Anyway about 2.40 or thereabouts the transplant co-ordinator came and took us off to a quiet room and we were with her till after four basically going through everything that liver transplant entails from all the tests done this week, through being listed, getting the call, the operation and immediate aftercare through all the stages of the post op hospital care right through to life beyond and the lifetime of medicine taking, monitoring etc. etc. Just 'cos its a new liver doesn't mean the old condition can't come back so that gets monitored for life & treated where appropriate, chat went right through what can go wrong, and the decision tomorrow will really come down to "is this the right time to list?". We had a really good chat with her about the life hubby wishes to lead and we learned loads and loads and there was a lot to digest but we would still "go for it" if that is the decision tomorrow. Seemed fairly positive in that it being one of their own hepatologists that referred obviously means she things the time is right.
We have to wait and see, can't count our chickens and all that.
We returned to hubby's ward and next the anaesthetist appeared and he basically went through all hubbys chest, heart, lung test results and he says that he is currently physically fit enough to endure the rigours of surgery and the recovery period, there is nothing in his findings to suggest hubby shouldn't have the surgery and said the decision is going to come down to the hepatology and whether now is the right time to list. Hubby needs to continue his walking and eating giving himself the best chance of being fit for what could be a 10-12 hour operation.
Next the surgeon called at the bedside with further news on this splenic artery aneurysm - it has been discussed with the radiologist and surgeons and they will want to operate on it - sooner rather than later - it will come up in tomorrows decision meeting but surgeon said it would be in next few weeks, obviously as soon as they can get it done so it doesn't complicate matters at transplant. The plan would be to treat with an x-ray guided procedure just like a stent. Surgeon however also checked whether hubby had received any previous abdominal surgery so was planning his 'incisions' for the big op and was pleased that he had no previous scar tissues.
So all in all today has been really good, really positive sounding, and with no contraindications we are hopeful things will go our way tomorrow. Obviously this is something MASSIVE and not to be undertake lightly but come 4 pm or so tomorrow we will know the outcome. Transplant is inevitable as the only way to treat hubby it is just down to whether the timing is appropriate to do it now. We do hope so. Keep your fingers crossed everyone. Please !!
Well, what a day!! Consultant saw us this morning and went over what had gone on all week, asked again what our thoughts were and we said we hoped that hubby was going to be listed, at least being listed (and we can adjust to what the wait means) he will be waiting on something positive / a light at the end of the tunnel rather than waiting to get sicker before possibly getting added to list / not a great thought to live with and if his mental health deteriorated further then his physical well being would too. That was all taken on board though when doc described the three levels of the blood results - low, moderate and high hubby only scored moderate so at that point we worried things were sounding a big iffy. Dietician saw us again and hubby has gained weight and size and strength since he saw her in June of last year. She has also prescribed Ensure as a supplement to make sure he is still getting his dietary needs met during the weeks following endoscopies where he can barely eat solids for up to 8 days. It'll also allow him to have nourishment when he doesn't feel like forcing a big supper in.
Anyway thanks to the guy in the next bed (a kidney patient) we were entertained and chatted the afternoon away and although we saw the 'army' of folks involved in the assessment process gathering and passing and consulting in corridors we managed to remain relatively calm.
At 4.05pm we had a nurse come to the bedside and say "are you ready?" and we were led down the corridor to the same wee room we'd waited in on Tuesday. Consultant was there together with the transplant co-ordinator and another doctor and they said they'd had a long discussion about what was appropriate in hubby's case and the decision is he WILL be listed. Phew!!! We are still not back on earth yet, the relief.
He isn't listed now as they do want to carry out the operation on the multiple (not single) splenic arterial aneurysms which they want to do this next week as an outpatient so we are going to remain in the Edinburgh area just now rather than trek home only to come straight back. Following that procedure he will be put straight onto the transplant list but we have acknowledged his wait could be a longish one.
Anyway we've got the result we wanted, something positive for a change even though it means one step closer (potentially) to one of the most massive operations going.
Going to go and hug my hubby for a while now and try and come back to earth.
All the best everyone else out there, thank you all so much for your supportive messages.
Hey, That's brilliant news. Once on the list I waited 8 days, hugs became precious . I know someone that only waited for 1 day. I am so pleased for you both , I hope your wait is short and you both live long happy lives together?...Take care
Excellent news. Thanks for all the information, it has been extremely useful to me. Fingers crossed Stephen gets sorted out very soon & he gets back out there running asap.
Katie - not been on for a while and just reading your posts. Excellent news for you both - really, really pleased that things are moving and warmest wishes to you both on this rocky, unpredictable, emotional rollercoaster road.
Thank you everyone for your messages. Just waiting for his appointment to go in and get these aneurysms in his splenic artery sorted out first and then we get officially listed. Was a busy week but not actually as frantic as expected. Managed to travel home for a bit of home comforts, our caravan park was very accommodating and we've been able to leave the van on site and just travel home by car reducing cost and journey time as its possibly going to be a quick turn around and we'll likely be back at Edinburgh later this week.
All the best to everyone being assessed this week ......... especially you Phildad, hope it all goes well and they can you sorted quickly.
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