Getting the call: As some know yesterday... - British Liver Trust

British Liver Trust

30,064 members15,382 posts

Getting the call

Lippy42 profile image

As some know yesterday was my hubby's first appointment at Queen Elizabeth when we got back home our heads started to work overtime racing ahead to when a transplant might actually happen .So my question this morning when the call finally comes and I have to take hubby to hospital for his transplant once I've checked him in what do I do next do I go look for a b&b will I be left on my own I'm already panicking ste is my rock we do everything together what do I do?I dont do cities so way out my comfort zone what plans did you put in place any suggestions would help stop the panic already building up 🙄

30 Replies

Hi. I know how you feel as I was in your position 6 years ago. My partner went to St James in Leeds & once he went to theatre I felt lost. Luckily the hospital has a kind of hotel for cancer patients to stay if they need to. Also we were called in on a Sunday so the hotel was empty . I stayed for 3 nights & the staff were amazing. Speak to the staff at Hubby's next appt....I'm sure they will explain everything to you. I'm not sure of procedures after Covid....I stayed with my partner all day until he went to theatre. Hope this helps a little.xx

Lippy42 profile image
Lippy42 in reply to h0b0

Yes thankyou the feeling lost bit is overwhelming me 😪

Ewife profile image
Ewife in reply to h0b0

Interesting....I was told I couldn't stay in this hotel as it has to be prebooked🤷‍♂️ they told me there's a good Ibis nearby

h0b0 profile image
h0b0 in reply to Ewife

Hi. Do you mean St James ? The nurses on transplant ward sorted it for me. Said if had been in the week it might not have been possible. I had to book on a daily basis so guess I was just lucky . xx

Ewife profile image
Ewife in reply to h0b0

Yes, this is St James. I wonder if its changed a bit in the last 6yrs/covid and all that? For most of the time my husbands been on the transplant list all hospitality was closed! I was looking at the possibility of camping in my car at one stage.....

Good Morning! We are in this boat atm... theres one thing I've decided is I'm not leaving the city my husband is having transplant in until he's through and out of danger!! We had a dummy run(cancelled transplant) a few weeks back, which was incredibly disappointing but at least now I know what it going to work😊So when we got there they showed us a room of the ward and I was allowed to stay with him right until he went into theatre (which in this case was the point we were sent back home....yes - gown on, canula in, stockings on etc) At this point, my brother in law and my daughter are going to book a travel lodge or basic hotel room for us sit in through the night. I packed extra tea bags etc because I think that's what I'll spend most of the time doing. Also phone chargers and toiletries etc. If you read back my posts, you'll see I asked on here what to pack and everyone came in with very useful replies.

DM me if you want more detail of what I have packed etc.

The main lesson learnt is don't set anything in stone until he is actually in theatre, because we've been stood down 3 times now over an 18month period.

Atb

Ewife

Lippy42 profile image
Lippy42 in reply to Ewife

Thankyou do much for your experience what a time your having I will definitely pack bags ready to grab and go and like yourself I will want to stay close by once it's all sunk in I will have to get my thinking head in gear Take care sending hugs and hope you get the green light very soon xx

I’ve read on here that the assessment process is quite protracted and involves a fair few days in hospital. I’m sure others will respond and explain how the QE assessment works. I think this is the time when they support you with planning for the transplant...both practically and emotionally. I’m sure you can ask all those questions then. I know Birmingham well and the QE is a bit out of the city but well connected by rail links to New Street Station. There aren’t a huge amount of hotels immediately near the hospital strangely, a couple of B&Bs and a more expensive university conference hotel. It’s easy to get into the city centre though so don’t worry. It’s actually a really nice city and the QE is a fantastic hospital.

Hi,This will all be explained to you both when he undergoes assessment for transplant.

They told us that they would send me home, obviously it’s a major op, and patients need to be transferred to ICU afterwards.

They do recommend keeping bags packed and ready to go, they expect you to be at the hospital within 2 hours of getting the call.

We were also told waiting on the list can vary depending on blood groups and other factors.

Good luck x

Hi Lippy

Fortunately when it comes time for the assessment for Transplant, all those things are covered. 😊.

The assessment at the QE is usually done as an outpatient over 3 days, split in two. 1 day to go and have a load of tests run and a quick outline of the process and then, a few weeks later, 2 days where things are explained in more detail and you get to meet all the people involved.

When it comes to the transplant itself. There is an on-site unit at the QE where people in your position can stay. Think my sister managed to get in there for a bit after the transplant to catch up on some sleep. I dont think she got very much before hand or during anyway.

With the bunf they send out for the assessment, there's a list of nearby hotels and b&b's included too. You can use that for getting somewhere to stay during the assessment too. So if there isn't any room at the hospital there are plenty of options. To be honest though they'll do their best to get you in at the hospital after you've travelled down after getting the call. They understand you'll want to be pretty close and it helps them you being close too.

I think when we arrived my sister just stayed in the hospital room with me on the night of the call, but we did get there at 1 in the morning and it was pre-covid. So may not be an option now. Cant think it was that comfy either. Besides by the time they'd gone through the tests after arriving there wasn't much point going anywhere else anyway.

Hi Lippy,From what you say I assume you have had your first Liver Transplant assessment at QE?

If not then you should receive a date to attend this if your recent consultattion showed a UKELD > 49 and you meet certain criteria. These typically are: Decompensated liver; Cirrhosis; Ascites; Varices ; Portal Hypertension.

YOUR CONSULTANT NEEDS TO CONFIRM THIS!

LTA No. 1 is one day (9-6) and you will meet a Liver Coordinator; Dietitician; Nurse (blood tests) plus a very useful "Green Book" detailing everything to do with the a transplant. The Liver Coordinator will have excellent advice re accommodation .

Nuffield house is on site and free for patients and about £30 for relatives. Edgebaston Park Hotel is very popular and close by.

Hi yes ste has a ukeld 57 decompansated HE . Portal hypertension varices we were there yesterday and our next appointment is 14th june we are going to plan this next trip as yesterday was sprung on us x

All the best. Was yesterday classed as the Phase 1 Liver Transplant assessment, or have they bypassed that due to the urgency of your condition?

It's good they're fast tracking you if that's the case

Phase one our next appointment is all day then we go back for a 2 day appointment then on the list from there providing no other underlying health problems .hubby has a lot of muscle waste so the aim is to build his strength increase his protien drinks and exercise but I'm on it I will get him fit for this 👊🥰

Lils2019 profile image
Lils2019 in reply to Lippy42

Sounds like the plan is in place.My husbands team met at the end of the week, on a Friday after all tests were completed.

They all make the decision as a multi disciplinary team, they discuss all the tests and results, they even check teeth to see if there is any sign of infection, ( as a new liver wouldn’t cope with any infection )and they make the decision from there, so you may not get the decision on the day.

Good luck, take care x

Stationary cycling, walking (if poss) and at least 3x 20ml Renapro is working for me. Plus chicken, fish,, legumes; eggs and cottage cheese .Dietitician will advise at assessment along with grip test and tricep measurement.

BTW Renapro should be free if over 60. Normally £4 a shot.

Good luck.

Still waiting for me ;(

Hope you dont wait to long thankyou for replying hes on renapro and fortisip dr wants him to try for 4 renapro a day and 3 fortisip .

Kristian profile image
Kristian in reply to Lippy42

Hi Lippy, with regards to the renapro and fortisip. After transplant I managed to get these on prescription. If you are having to pay for them have a chat with your GP to see if they will do the same. If they need something from the QE to confirm, assuming its not in the letter QE send, then you can contact Dr Armstrong's secretary and I am sure they will sort out an appropriate letter. No guarantees but worth a try.

Lippy42 profile image
Lippy42 in reply to Kristian

Hi we do get them on prescription I pay yearly which helps with cost along with all his other meds he has a dietician on board who he has regular contact with aswell 😊

Kristian profile image
Kristian in reply to Lippy42

For me it was discussed and included in my discharge notes from the hospital to my gp after transplant. I needed building up, lol. My gp then made the prescription. If you are having difficulty arranging this when you speak to the dietician at the assessment ask this question there. They may be able to help. You do get to see the dietician after transplant and I'm just trying to think whether that was when I got the instructions for my gp. Either way it came from the QE, but I do think it was on the discharge instructions for the gp. There's no reason, they can't do this pre-transplant though and if its something Dr Armstrong recommended then hopefully he will include it in his letter to your local hospital which I hope you too will get a copy of. That should help your case with your gp.I too pay the yearly prescription charges, much cheaper that way and its all included in that monthly or annual payment depending on how you pay it.

Lippy42 profile image
Lippy42 in reply to Kristian

Thankyou and hope your doing well 😊

Kristian profile image
Kristian in reply to Lippy42

No probs, happy to be of help. 😊

Hope everything goes well for you. Obviously you don't know the time line for the transplant but keep in mind that the Commonwealth Games are on at various locations in Birmingham between 28 July and 8 August so hotels may be busy. It may be worth downloading hotel locations and phone numbers ready for use

As mentioned in an earlier post. Nuffield House may be your answer. It’s on the same grounds as the hospital and walking distance to the main hospital. It’s very basic but priced at £30.00 which helps. People who stay there are very kind whom are either the patient or their families in positions such as you. I stayed there during my first Assessment.

I got my call at about 1am. We went through to the hospital and we sat on the ward until my transplant started at 10 am. Then hubby went for a drink in the cafe, read his book, read the papers, went for a walk, etc. Basically he hung around the hospital until he heard I was out at about 12 midnight. Then he was allowed to see me and he then drove home. My transplant was three years ago. However, I think you have to just drop your other half off at the door now. I would ask the co-ordinators for advice.

Lippy42 profile image
Lippy42 in reply to Janty701

Thankyou .hope you are well x

Well, nothing was put in place for us. I received the call early evening and was at Addenbrooks an hour and a half later. My operation was for the next morning. My husband was allowed to sleep in the small waiting room- they gave him a blanket- and my son slept in the car. When I went down for the operation they went home and my husband was contacted by the surgeon when it was over.I asked my husband not to visit whilst I was in intensive care as we lived a long way away, he just rang each day to see how I was doing.

My wife stayed at the hospital the old nursing home at the QE when I was transplanted which is 5 years ago my sister came as well and that's where they stayed it wasnt expensive .try not to get overwhelmed with it all the QE is brilliant and will look after you both

Thankyou .Hope your well 🥰

Thank you I very well still working at nearly 68 as a landscaper and tree surgeon I'm blessed good luck you'll be in good hands

You may also like...