Transplant Assessment

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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18 Replies

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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...

  • 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,...

  • 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...

  • 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....

  • 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....

  • Hiya,

    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...

  • 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...

  • 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...

  • 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...

  • 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...

  • 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)...

  • 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.

  • I am really pleased for you both. Lots of luck for the future. X

  • Fantastic news for you and your husband. I wish you all the best for a short wait x

  • 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...

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