Assessment time!

[Dulux]

Got home from a typical Friday at work, I think the boss thinks I have two hands so should be able to answer 2 phones at the same time, anyway I got the call, come on tonight, so after throwing clothes in a bag, grabbing a couple of good books, I shall be resident at kings for the next few days, I'm on Dawson ward of anyone wants to visit! I'll be the one in the 'cooler'!

I was only saying to the misses last night it would be nice to hear something, and my wish came true.....I wonder what's for brekkie??

Stay well people.

I'm fingers crossed I'll have some sort of signal on the ward.

[Katherine1962]

Good luck -wishing you all the best 😀

[Tatjana]

I was in Dawson Ward at King's, brings back memories! Best wishes.

[chugalong]

Hi, wish you all the luck and best in health, I was also in Dawson and staff were all so great, and that is from all walks of life, all the best

[kitkatkaz]

Good luck Dulux, I know Dawson Ward, spent a bit of time there myself in the past, but also involved with King's food audit occasionally as a volunteer, there will be something suitable there for you for breakfast, if there isn't, just ask the staff. I hope things go well with you.

[Dulux]

So made it through the first night, lots of form filling in and spent 30 mins with one of the dr's, taken loads of blood samples. I may be aloud home for weekend leave, seems silly as haven't been here for 12 hours yet, but this has got me a bed for the main bulk of the assessment next week.

Anyway am catching up with a good book.

Fingers crossed I can give my little girl a cuddle on the train platform later.

[Dulux]

Well I didn't need to be asked twice, you can go home for weekend leave if you want, by this point my bag was already on my shoulder!

Thanks for all the messages, it helps.

There seems to be a lot of talk of HE, and watching for symptoms, I guess because my bloods are only going one way. Any advice?

[Alicja_mb]

Hey, good luck with the assessment. I'm sure they wouldn't let you leave the hospital if they thought your bloods would decline dramaticly. I know when I was ill I was pretty much a hospital hostage until transplant (this was a few months). HE is a difficult thing to look out for as you won't know you have it, best thing is to let people around you know the symptoms so they can get you to A&E.

Alicja xx

[Dulux]

So totally lost track of what day it is, had lung output test, met with transplant coordinator, had blood has done, it's all been very steady, they have assessment meeting Friday to decide outcome, hopefully should be discharged Thursday. It's interesting meeting other people on the ward and hearing their story. That's about it for the moment, and yes I'm really quite bored......

[Dulux]

I was discharged and after waiting ages for some prescriptions to come up eventually got home just after 09:00pm, I was shattered.

So tests I had done, significant blood test on first night, blood gas test from artery, lung output, bike physical test, heart ultrasound and chest x-ray, I didn't have repeat CT as had one 3 weeks ago. I met with the 'transplant team' some times that meant a sit down and natter, others just an brief introduction.

some the good bits and bad bits;

Good bits first; Although hospitals are quite busy at times the rest does seem to have helped, I didn't need any pain killers as I just wasn't as active as usual, I drank plenty of water and for me it was great to see how good my obs were in term of blood pressure and blood sugar, not that I've ever had a problem.

It was nice to talk to other people, people who understand being unwell, a sympathetic ear and all that.

It was great to meet with a straight talking consultant, you will talk to lots of people who will sit on the fence, and we had a good chat and smiled and i even got a laugh, this is a joy as you will meet with many who have the inability to smile let alone laugh, look I know its a serious place, I understand that but just a smile can make such a difference especially when they are being 'realistic' with you.

Bad points; Not all hospitals will be the same but, I had no idea of what test when, on my day of discharge they just turned up out of the blue to do a chest x-ray, it would have been nice to have a vague plan.

Being discharged is a mess, I constantly had to ask nurses, I wasn't pushy, I ended up moving into the day room as they wanted my bed, which I said was no problem, but I didn't want to wait around for ages, guess what, I did, then the nurse turned up who was very apologetic and asked why I was still there, she had gone on a break, and even though I informed the nurses station no one told her, it was all just a mess, it was a shame as this process is a shambles at best, I've had it happen to me before. I didn't want to 'walk out' as they are only trying to help, but the last thing I needed was that, I just wanted to be at home and comfortable.

I can strongly recommend if you are in good enough health, and they are checking your obs in the night, then ask the doctor if they have to do them, I was woken up at 3am to have my obs, which is fair enough when you are very ill as they need this information to react to, but when your obs are as good as if not better than the nurses its pointless and ruins your sleep. I spoke with one of my doctors and he sorted it, it put the nurses nose out of joint but it was silly, your body needs to recharge whilst you sleep.

My last one is more of a state of mind that works for me, everyone will be different, you will be hit with some hard facts, survival rates as percentages, there is no guarantee listing will be right for you etc, these hit hard, but I will not let fear control my life.

I hope what I have written helps someone, do not be afraid of the assessment, its not a challenge, its a series of tests to ensure your safety during a transplant.

I will have my listing decision tomorrow, watch this space.

Stay as well as you can.

Gareth.

[Katherine1962 in reply to Dulux]

Thanks for sharing. So right about the scary facts re mortality % etc. I sit with my husband at his appts and can't believe we are talking so matter of fact but weirdly I feel pretty calm and safe when you talking to these liver experts. Finding out soon if my husband is going on list so know how it feels. Good luck 😀

[Dulux in reply to Katherine1962]

I found out I was listed yesterday, the assessment went well for me. I'm not a big fan of statistics, they need something to tell people, but realistically I'll take any odds over the future with my own liver. I find comfort in the various people I've met at Kings.

I hope you get the news you want soon.

[Katherine1962 in reply to Dulux]

Hope you don't wait too long 😀