Well I'm up at Kings, currently laying in my bed at the lodge guest house they provide which is lovely, having my assessment for transplant. Two day assessment, today has been meeting the coordinator jnr doctor and consultant. I've had about 20 bottles of blood taken, urine samples, ECG, Echocardiogram, chest X-ray, lung function test, my CPET was cancelled for today (dag nam it) because the bike was broken lol. Tomorrow will be meetings with the dietician, social worker, surgeon and anesthetist a CT scan and if the bikes fixed the CPET.
They are all lovely people here. Very friendly, can't fault them in anything. I've been told I need to eat a high protein high calorie diet, I specifically asked if Haribo are OK and got the thumbs up 👍 😁
I've got a sneaky suspicion I'm not going to be put on the list just yet however. I think I'm too healthy but I guess time will tell.
Hope you are all doing well. Take care. Eat HARIBO!!!
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Hi- and good luck to you. I had my assessment in January - it followed a similar pattern to yours. I am in the grey area of being in-between. I am not ill enough to need it yet but not well enough to be on a list. I was also told to have a high protein and high calorie diet..... no one mentioned Haribo!! I agree that the facilities are superb, with somewhere to stay!
Everyone keeps saying it could be 18+ month wait. Which is fine, and I understand that they probably give you the "worst case scenario" waiting times but from what I've read from people on here once on the list most seem to get their gift in a relatively short time.
I am thankyou. only symptom I had was jaundice , after all my bloods and tests came through after assessment they said I needed one within next 12 months . I was sure they had got wrong results lol but now I realise how ill I was I feel like a new woman x
It's difficult to know isn't it? My primary symptoms are jaundice and fatigue other than a few aches and pains I really feel fine and yet my UKELD score is 58. Everyone's different and unique as is everyone's particular situation so you can't really call it. I guess it all depends on how many unknown tick boxes I check.
Hello to you all. Thanks for what you have written. My worst symptoms relate to my hepatic encephalography. I am not allowed to drive any more (DVLA ruling because of the confusion it was causing. I have to post my licence back to them. It all worried my children because I am widowed and live alone - they think I will do something daft when I am confused! Good luck to you all.
I do daft things at the best of times heaven knows what I would be like with HE. I'd hate to lose my licence, I quite enjoy driving and want to treat myself to a motorbike again, but hey I wouldn't want to be a danger to myself or anyone else if I wasn't up to it.
Hopefully your kids are local to you so can pop in regularly and check your daftness score 😉
The children are all married , and they are all as helpful as they can be.... but they live in places scattered round the world. However they keep visiting me when distance allows. I am selling my car this weekend - that is a bit of a milestone I did not want to happen, but as you rightly said, I would not want to be the cause of an accident. As soon as the HE diagnosis came my way, the GP told me that I had to inform the DVLA.
Hi,I spent five days in a ward there for my assessment and a week or so two days in a ward to do the angiogram, I lost my driving licence and my business (running for around twenty years) due to my health and HE. I ended up not that long on the list and thanks to a thoughtful donor, their family and all at Kings, ( as you say so great in all ways) and am doing well now. I so wish you all the best and you so sound you got the go and push ( maybe it's the thought of the Haribos) that is needed to make all their hard work successful.
Hi , good luck with your assessment, I was a bit like yourself and kinda didn't think I was ill enough for transplant but I think when you live with liver disease you get used to being ill and so don't realise just how bad you are and like gaynorlowson said it's not until you are better that you realise how ill you were if that makes sense, but I hope everything goes well for you ,take care and enjoy your haribo 🌸
I agree with other posters that you don't realise how ill you are until post transplant. The illness creeps up on you over the years and you compensate. After assessment I was put on priority listing and had transplant within a month.
I had my transplant just over 2 years ago at King's. My partner and family stayed in the Listen Lodges. I can't tell you how important that was for me. So I've signed up for a charity 50 mile bike ride uk.virginmoneygiving.com/Da...
So if anyone fancies donating or in fact if anyone wants to join me on the ride.
Hello hunni you just brought back so many memories with this post lol. Glad it's going well and lucky you with the haribo think I lived on them secretly before..... As I have mentioned to you before it's based on your ukeld score not how you feel, when I done my assessment I felt like shit I was positive I would be OK, but nope not first time it was only 3 months later I was being re-assessed and I felt great then lol. The brain a wonderful thing it even fools us x. Good luck 🍀
Hi all, I'm going for for my first assessment on 3rd April up in Queen Elizabeth Hospital Birmingham. Feeling very apprehensive about it all, but I feel drastically different over last 2-3 months than ever before. Still trying to convince myself it's not quite time yet but we'll see. Good luck with your listing 😊
Well today was a bit more shambolic. Lots of sitting around just to speak to someone for five minutes, plus I've got to stay an extra night because the bike wasn't fixed. But I don't care. Because the dietician actually said these words to me "don't go filling up on fruit and veg, ignore all that and eat everything else" she also confirmed that HARIBO are almost the perfect snack and that I need to eat or snack every two hours!!! 😋
Time how long you see the anaesthetist, think I saw he for all of 20 seconds!! Then tell the transplant team, it will amuse them, the surgeon I saw was weird, I should of asked to see his knife skills!! Cpet I really liked guess that's the competitive boy thing, take shoes, I did it bare foot as only had my slippers and it hurts after a while. You can get buckets of haribo on amazon, I've eaten shit loads since I've been listed, going to have to rein that back after transplant! Ohh Ruskin park in the sun, spent some time there, I'm not a fan of London, I'd rather be in a field in Sussex any day. They will tell you Friday if you are going to be listed either way you'll of had a good check over.
Yep, never made it out of the village!! In my heart I would love a Ducati Multistrada, in my brain I'll keep the blackbird as it makes the most sense, its an incredible bike, just doesn't stir the soul if that makes sense, I think I may treat myself to a new exhaust after transplant, I'd also like to do my advanced riding course and volunteer to ride for SERV as a blood bike, but one step at a time as they say. I haven't ridden it for quite a while as the fun police (wife) banned me, I'm not sure my body is up for ridding at the moment so I'll stick to the cage.
Before I got ill I was planning to do some decent weekend rides, the picture was taken up in Wales which is amazing to ride as long as the weather is with you.
From the weather down in Sussex today another glorious day, I was admitted when I had my assessment, not sure if that is better or worst?
I'm born n bred Sussex. Worthing area originally but in Bexhill now. But my other half (original Manc) is dragging me up north soon. She's been down here for over ten years but is yearning for pigeons and whippets again so I'm buying a flat cap and heading north soon.
I know what you mean, although I've never been a speed demon I just love the sense of freedom a bike gives you. Haven't had one for a while, couldn't justify the expense as it'd be more a luxury than a viable commuter. But if this has taught me anything is life is too short. We will be moving fairly close to the lakes so should be some awesome rides around there. I'd love to do my advanced too and volunteer for SERV. would be nice to find a similar paying job too when I'm fit enough.
I have most of my relatives tup north, I just can't earn what I do down here up there. I've got over my speed addiction, its nice to know its there, but my bike is down right terrifying if you let her get going, I find more fun on a twisting A road than out and out speed. It did well in Wales we had all the luggage on and 2 up and it performed faultlessly which is no surprise being a Honda.
I like the idea of giving something back, I did toy with the idea of becoming a paramedic, but I like my job and I think SERV would be enough for me.
I'm in Heathfield, near Uckfield, Bexhill isn't far, been to the cafe down on the beach front a few times. I'm not far from Wessons cafe which always attracts loads of bikes, don't know why, I don't really like the place, would much rather find a nice pub somewhere further afield then sit in a cafe and wait hours for food.
I hope you get back on a bike again, I met some amazing people, and people are generally very friendly towards bikers which is lovelly when your just bimbling around.
Well. It's seems I'm stuck in the big smoke for another night. The CPET bike has broken again!!! Lol. More sitting around. We are trying once more for tomorrow failing that it's gonna have to be rescheduled which will be a pain.
Last night we treated ourselves to a bus into town and went to see The Lion King. Love the theatre darlings. Think tonight is going to consist of a weatherspoon pub tea and cinema. As lovely as Listen Lodge is we are getting a bit bored of the same four walls.
As a point of interest to anyone else coming to Kings or anywhere else (I think it's a national thing) I've been parking the car on someone's driveway through an app called Just Park. Really handy and trouble free. And cheaper than hospital or public car parks.
The pub just around the corner is excellent, nice and welcoming and the food is amazing! It's called the 'Sun of Camberwell' just at the back of KCH!! Total recommendation!
Well we are back home. Had another call from the coordinator to say the bike won't be fixed in time. Got to try and reschedule it for next week. Frustrating. Means I won't know anything now till a week Friday and that's if I can get in next week for the test. Oh well. What can you do.
I found the waiting to hear the results was the worst part. Also the second day of the assessment was very unstructured. I waited for 3 hours before I was seen by anyone.... then three professionals came at the same time.
Argh!!! Lol. Well I phoned to reschedule my bike test to be told it all got fixed and I could have stayed and had it done. Grrrrrrr. Never mind. Booked in for next Tuesday.
Well finally had my CPET yesterday. Not much fun. That last minute killed. Legs just stopped working and wouldn't do as they were told. Rebellious legs.
Now just the wait till Friday or hence forth known as Judgement Day.
Well here we are, Judgement Day... I'm really not expecting to be put on the list "today" but you never know, I'm no doctor if I was I'd be asking for a serious pay rise 😏
Part of me, a lot of me, wants to be put on the list so that I can leave the waiting to be waiting chapter behind me and start the waiting chapter. But I don't think it's my time just yet.
I'll be mainly sat staring at my phone today waiting for it to ring, in advance I apologise for my rudeness and abruptness if you call me today to check if I have PPI.
Good luck for today. I found the waiting very stressful so I know how you are feeling. We all try and read the body language of the doctors for clues as to how it is going!
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