My husband is waiting for his appointment to be assessed for transplant. I have read a lot of really helpful things on here but one thing I am still unsure about, and I think I may need to have sorted before I talk to the team in Birmingham.
Assuming he gets accepted onto the list....
Can he take a taxi on his own to the QE in Birmingham and be admitted without me being there with him? We are about 1.5 hours away to the south west, and I often work in London - in the other direction, and sometimes overnight. (He is currently just about well enough to look after himself alone).
I don't want to spoil his chances of getting on the list by this being our solution to get him there on 1 or 2 days of the week, if its not deemed acceptable. But equally, I can't be at home 24/7 for however long it takes.
If he has to be accompanied, what are my options do you think? I could try to pay someone to be a carer on standby and take him until I can get home and then drive up there?
It is the only practicality that is really bothering me!
I would be able to commit to looking after him for a short period of time afterwards, just can't do my job fully at home for months.
Any thoughts would be most welcomed.
Rusty
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This will be something that is inevitably discussed at his assessment. In Scotland, a lot of patients are blue lighted to hospital and certainly that was the proposal for when my hubby was on the list (we are 100+ miles from Edinburgh). Other patients has also been blue lighted and even helicoptered when their call came. In our case we said there was no way I could drive him safely that distance and with the ansiety and stress of it all - I would follow on and at the time we had our caravan sited 15 minutes away from the hospital so me and out cat had some where to stay.
You also have to consider that if the t/p doesn't go ahead (usually don't find out till many hours after admission) that you then have to make plans to get home too.
Thanks Katie, I'm just a bit cautious of giving the 'wrong answer' as I've seen a lot about being expected to 'leave home within 30 mins' - possibly we couldn't even get a taxi organised for that in the middle of the night as we aren't close to a big town - and it being the patient's responsibility to get there - but I did wonder about longer distances. And that he won't get on the list at all unless he has the right carer support - but I imagine that is more for post op.
I am happy to make arrangements to drive up and down once he's in, not worried about that, its just the getting him there in the first place that consumes me. I know there will be a solution, but good to hear what has happened to others.
The liver isn't immediately available - they call the patient in first before they even 'retrieve' the liver from the donor and it then has to make it's way to the recipient hospital - liver can now be coming from anywhere in the UK as it is a national list now not just the local areas which it used to be. It's not until the surgeons at QEB check and assess the liver as suitable that they'll in all likeliehood even prep hubby for surgery - he could be there 10 - 12 ++ hours before they say if it's all systems go and in that time they basically repeat t/p assessment to check he's also good to go.
They will discuss options for getting hubby to hospital in time at the assessment - we had to always be within 1 hour of home and ambulance would collect hubby to blue light him. We met another couple who had been out driving and ambulance was waiting at door for him when they got home. Always had to notify co-ordinators if we were staying anywhere other than home address.
Be sure they will discuss and make all arrangements with you if they decide that t/p is the necessary course of action for hubby.
Thanks I do understand they will discuss it, but I am just trying to understand if he can make his own way there in a taxi so that we have that solution ready to discuss. Or whether there will be pressure on me to change something about my job, which I would struggle with.Their site says:
"It is your responsibility to arrange transport to the hospital for your transplant. If you have absolutely no way of getting in you should discuss this with the transplant co-ordinators at the time of your assessment."
We don't fall into the category of having 'absolutely no way of getting in' as we can afford a taxi.
Hi I had a transplant in February this year the hospital sent a taxi for me and I went on my own. My husband couldn’t come due to current Covid regulations which is fully understandable
So i think I am saying that the Birmingham arrangement looks much less likely that you have an ambulance unless I imagine you live at considerable distance.
Best advice is to be honest so appropriate arrangements can be explored and put into place. Getting listed for a liver is based on need not on ability to get to the hospital.
If it looks as if a taxi is going to be your go-to transport, I would suggest you contact the taxi company you are going to use and appraise them of the situation. That way they will know what they need to do when you call or may be able to identify a driver who lives near to you and is prepared to assist even if not on shift. This may help with anxiety if your husband is on his own.
Thanks, yes I thought that would be the way to go. Possibly even to have someone on a small retainer to definitely be available overnights planned ahead. Everything is possible, just need to know what to do. He needs to be confident it would be reliable and comfortable.
Morning Rusty,The conversation I had at Birmingham during transplant assessment while talking to the transplant co-ordinators, went something along the lines of ‘by hook or by crook we’ll get you here. We have been known to be very cunning in arranging lifts, from ambulances to the police!!!’
Don’t fret about it at this stage, a plan will be made for your circumstances, and yes it will be discussed during assessment.
Thanks Andy, that is really good to know. I'll stop trying to plan out that bit then. I'm not really worrying or fretting about things generally, I'm quite laid back! But I didn't want my need to be working to be the thing messes it up for him.
Hi Rusty Just to let you know my own experiences. I am a mature single lady.
The first call was around 10pm. The hospital organised a taxi which took about 30 minutes to King's in London , at that time there was hardly any traffic and it was covid two years ago.
The second time an ambulance was arranged on a Sunday afternoon, it took about an hour 20 mins.
On both occasions I was by myself. After the op two weeks later I was allowed home by myself so I really don't think it'll be an issue about your husband getting there by himself if he is well enough
Youll be fine. All my very best wishes for the future
I do wish the hospital websites wouldn't have such stark messages on them! The Birmingham one says that 'Part of the assessment involves your family (or carer) coming to Birmingham to meet the transplant co-ordinators so that a plan for your care after hospital can be agreed. You will not be added to the waiting list until this has happened.' While this is great to indicate that carers need to be involved, it does rather suggest you can't do it alone.
I am more comfortable now that I may not need to put in place a complicated plan B, plan C etc.
It was the aftermath I was worried about too. I live in a first floor maisonette. Would I manage them , shall I have carers coming in etc etc. Transport was arranged and paid for follow up appointments. It's the unknown that is frightening the reality was fine.
Hi Rusty, I am 110 miles from the QE and awaiting the call. My Wife and I had this conversation at the assessment and it was agreed I would be put on 'red flag ' status with the local ambulance service when the call comes through. My Wife would not be allowed on the initial call out, but would be kept informed by the Liver Coordinator. Unsure at this time how I would get back from QE should the liver not be suitable. Could be taxi (£400 return) or possibly by rail travel depending on my health status.
Thanks PT that is incredibly helpful. Was it the distance that put you on that status? We are nearer, about 65 miles so a lot nearer, but about an hour and a half drive. Taxi home would work for us, about £250.
Thanks all, if the general consensus is that you can go in without a carer actually pitching up along with you, then all is well, as we can surely arrange a taxi if one isn't to be provided. I think I've got my answers.
Appreciate all the replies and warmest of wishes to those on the list, those through the other side, and any other status there is xx
Firstly, the liver transplant assessment team will want to know, what care previsions have been made, or are in place for when he leaves the hospital.
A patient's recovery varies from person to person so it’s hard to know how a person will fair once they get home. They will certainly need some care and support.
A liver transplant is considered as being a major surgical procedure, and other factors need to be considered. From the physical point of view, this fella will have around 50 metal clips holding his tummy together. He is going to feel sore and will possibly have limited mobility for the first few weeks. Climbing stairs might be difficult, and he may easily become breathless if there’s too much exertion. Even walking up to the local shops and back might be too much.
Having someone close is important as blood clots can occur.
Contact with others, and crowded places need to be avoided. As his immune system will be turned down to avoid rejection, he will be extremely venerable to possible airborne infection.
For the first few months, regular trips to and from the QE will be required. For these, they advise you NOT to use public transport, and to avoid crowds. Shops and even GP surgeries are to be avoided.
During the first few weeks/months, he may be taking around 10 different medications these will most likely include steroids. Some of these meds need to be taken with food, while others are taken at different times. So once again, someone needs to be on hand to make sure this is all taken care of.
Finally, there is often a mental aspect that needs to be considered. Many people post-transplant can experience a condition known as “Survivors Guilt”, or even “PTSD”. These conditions can involve a deep feeling of melancholy and unworthiness. Bouts of crying are common. A liver transplant is a very traumatic experience for some people.
The assessment team will need to be assured that aftercare is in place.
Finally, organ donations have much improved over the last few years.
There was a time when many of the livers harvested were found to be unsuitable, and a lot of people sadly had a wasted journey to the transplant centre.
I know of one couple from mid-wales who had three journeys to the QE and back before a suitable liver was found. I can only imagine how difficult that buildup of hope and then being let down, must have felt, and then to have it happen a second time, must have been an emotional rollercoaster.
The QE Birmingham was one of the first hospitals in the UK to trial a Liver perfusion machine. Here many livers that would normally have been rejected or discarded are hooked up to a Liver Perfusion machine and kept alive by mimicking the conditions within the body. By supplying blood and oxygen, the liver can recover and even begin to repair itself, making an unviable liver useable again.
When this machine was first being trialled at the QE Birmingham, they found that this machine put an enormous strain on blood bank reserves. The local boffins across the road at Birmingham University came up with a way of using synthetic blood, which is now widely used today.
The following video I’ve used a few times on this site before features a lovely gentleman named Alan Hyde. Alan sadly passed away in September 2020, due to kidney failure. (I have informed the BLT a few times now, but they are still showing his name and that of the, "Queen Elizabeth Liver Patients Support", which Alan setup, and which nolonger takes place the website link is nolonger available).
Thank you Richard, I've read that quickly but will read again properly. Yes there will be the right support in place post op as I can organise that, and myself and my work while he is in hospital. It was just the the getting there that was the current concern. I will watch the video later, much appreciated.
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hubby refused transplant due to PTSD 
Being referred to Birmingham 
