Hi all, had a phone call from QE Birmingham yesterday inviting me for transplant assessment on 18th March, letter to follow. She went through the one day and its scans, bloods, weight, height etc. Starts at 9.30àm. She said that's the gentle one compared to second assessment. I have C ellulitus at the moment and have put on 4kg in a week. Being treated for both. Can anyone share experience of assessments as I'm anxious
Thanks, julie xxxx
Hubby had 5 day assesment and was fortunate to have transplant 3 weeks later. It’s mentally exhausting we thought, nothing is unturned. The assesment probibally saved his life before the transplant, as he was so malnourished they put him on tube feeds. It’s nothing to worrie about but it’s a busy assesment . If you wish you can read my posts, I wrote on here daily so people would know what happens. Good luck.
Agnes
I attended a 2 day assessment at QE Birmingham 3 yrs ago, stayed there for the night at the Nuffield Centre. 6 other patients attended, it was quite enjoyable meeting other patients with similar conditions. The staff are fantastic they make you feel relaxed. Nothing at all to worry about.
Try not to be anxious, hard I know. My husband had to wait 2 years to be invited for assessment so we were almost excited to be going. The transplant coordinators are fantastic and answer every question and concerns you may have. You may also get to meet others who have been successfully transplanted and we found this so encouraging as they are so informative and accurate in answering questions as they have actually experienced it. Look at it, if you can as the very start of your new life, focus on getting on the list and then fingers crossed you won’t have to wait too long. My husband waited only 8 days, that was a year ago and now you would never know he had been so ill. He is fully recovered, doing everything he did in his 30’s, back at work and able to enjoy every day as a happy healthy 54 year old. The whole process is incredibly stressful but focus if you can at the light at the end of the tunnel which gets switched on once you get through assessment and on the list! QEH, is the most amazing hospital, as you will see in the months ahead, they leave no stone unturned and you are in very safe, experienced hands all the way through. Good luck and try not to worry, this is just the beginning of being well again to enjoy the rest of your life!
Hì! I'm sorry ì havent replied earlier but thank you so much for ýoùŕ uplifting reply. Thànķ you so veŕy mùçh! Julie xx
Hi Julie jules
Presume you have been told that normally there are two sessions for the Assessment at QEHB? The first one is one day, the second is two days. As they say, been there done that! That sounds so crass doesn’t it?
I have written at length, and I mean at length, 👎🏻, about this before so I’ll try and be succint - I find it hard - especially since the TP - wife says I can’t shut up. 😁.
First day is a few simple tests - I honestly can’t remember which - but nothing to stress about. If I told you the hardest was blowing into a tube to check your lungs you’ll understand what I mean 😁. Mind you it took me three attempts before Nurse said OK lol. The obligatory blood tests of course 👍. A nice little chat with the TP coordinator and done 😁👍.
Second session was, for me, about 2 months later. Two days, a few more tests, falling asleep in middle of scans, that sort of thing 😁. Then the interesting bits - meeting the people involved with the TP. Like the surgeon (unlikely to be the one who does the TP) but they tell you what’s what 👍, the Anaesthetist, an occupational health come physcholigist sort of person - or it could have been two different people - can’t remember lol. The latter is to see if you understand what the TP involves, your attitude to smoking, drinking, etc and your support “network” hehe your carer - whoever that is. The carer should be with you at the Assessment. One person on ours didn’t have a carer, but he was given special kindness in lieu 👍👍. He was an undertaker ahem.Then Coordinator again and maybe one or two others I just cannot remember. More standard test including, guess what, bloods 😁.
We also had a great chat from a transplantee and his wife. Really interesting. He said it didn’t hurt at all. As I PM’d you that depends on your constitution I think. For me, it hurt, lots.
Forgot to say that at QEHB the Assessment “centre “ - rooms 😁 - are in the old Hospital- as they call it! You gather in a nice cosyish - ish 😁 - room and the nurses looking after you are so so nice and make you feel relaxed. It is also great to meet others like you. In my case some seemed like me (health wise) but a couple of others looked, umm how shall I say, not well at all ☹️.
You get a buffet lunch in the same room and as much coffee, tea, squash as you want - help yourseflf.
Oh yes there’s also a little chat/video telling you about your (well not YOUR) but the liver 😁.
Hmm that’s about it. I think people were told at the end what the outcome was. I was. I was told I would be on the list subject to passing a special myocardial test that the anaesthetist wanted - because I had high BP and Type 2 diabetes. Held up decision for 4 months, but hey ho, he was only being cautious - thank goodness.
Look - I couldn’t help myself - I’ve rabbited on an on (more rabbit than Sainsburys as the song goes - probably before your time 👍).
Anyways have fun at the Assessments and for 2 dayer maybe take something to read as there’s quite a bit of waiting to see specialists. Forgot to say you see them in little private rooms off where you all (all - lol - all about 8 or 10 of you) wait.
Good luck Julie
Miles
Thankyou miles for such an interesting and informative reply. I read it with interest. It's prepared me as to what to expect as I was in the dark about 2nd asssesssment. Thank you once again
Julie xx
Hey there Pilo Milo
Interesting report. What was the special myocardial test? Did you need a stress test too?
Hi vee
Thank you. I believe the myocardial test is also called a nuclear stress test (they inject you with some nuclear thing - all under VERY strict controls 😁) so I think it must be the same sort of thing except for myocardial you get this injection and another one to simulate running a marathon (so they say) if you can’t use a treadmill - I could hardly walk at that time.
Are you having a myocardial then?
Miles
No just curious about it. I had a regular stress test in the past. Wondered what this special one was.
Hi Julie, hoping it goes well for you, and you don't have to wait too long. All the best Lynda xxx
Good luck I am sure everyone here will be thinking of you and sending virtual hugs. Jaycee
Thankyou so much , julie x
Hi just dragging myself off 2 hairdresser's 2 c if a miracle can be done on my thining hair lol. Mite be the tonic I need. X
Glad your happy, my hair very long, fine and needs a colour to remove some greys. I did start taking vitamins but stopped for some reason. I will book a colour now you've prompted me,, keep plodding on,
Julie xxx
Yes I had a colour 2 good trim and am booked in on the 16th March for blow dry to look my best for my assessment. Think if hair ok u feel more human lol. Take care and all the best with your assessment. Xx
Ì had beautiful hair extensions a couple of years ago but they were so high maintenance so neveŕ again? Good luck to you too and keep in touch
Julie xx
Julie jules and steak
I think it’s wonderful that you two are talking about your hair and looking good 👍 for your Assessments when you both obviously have serious issues that you are having to deal with at the same time! I am NOT being facetious- if that’s the right word? - I really do think it’s great. You both are clearly going to get on well with your great approach to things!
Good luck to you both 👍👍👍👍👍
Miles
Thanks miles, its just a coping mechanism talking àbòut something else, ìm sure steak thinks the same. It wasn't taken the wŕong way as your a kind man! Julie xx
Good luck with your Assessment steak. Try and enjoy it because, in an odd way, it’s quite uplifting. The second assessment is even better 😁👍.
Miles
Well u shud know us women like 2 look good even when we feel crap!! Have u had a transplant?
Yes - August 27 last year. Hehe you never forget the date. 😁. It was at the Queen Elizabeth Hospital in Birmingham 👍👍👍 👍👍 for QEHB!
Miles
How do u feel now 6 months on.
Hello
Well compared like I was before the TP
I’m alive 👍
Like a new man 👍
Only a couple of issettes to get rid of 👍
So you can’t get much better than that 😁 thank you!
Miles
Yes the consultant I am under at jimmys leeds said that his patients said they dint realise how ill they were b4 transplant. Will c how I get on after my assessment.
What a lovely time of heaŕ to be stuck in hospital, what care do you get when you go home. Do you get any after care as i live àlone
Thanks, julie x
Hi Julie
They send you home more quickly than you might expect. I mean I still had quite a lot of pain. But this is a deliberate strategy because they say you’ll recover more quickly when you are relaxed at home! And I’m sure they are right.
I didn’t have any care at home nor any district nurse visits - nothing. But bear in mind that you are quizzed about you care “network” that is there for you when you get home. I had wife and daughter so didn’t need any care. I honestly don’t know what they do if you are alone. Bear in mind that you are not allowed to lift carrier bags, etc and not allowed to do any hoovering, etc etc! And that’s for SIX months. So I can’t think you wouldn’t be given some form of care - but I don’t know!
Also bear in mind you have to go back to QEHB every week for around 3 months and then every two weeks for an undefined amount of time ! Yoiks 😁. They sure care for you 👍. You’ll get to know all the nurses at the liver clinic. 😁. At some point between 3 months and 6 months you will be transferred from the “surgical” team to the “medical” team. I’m still seeing both because of my issuettes .
Hope you are looked after at home!
Miled
Hi agàin, thañķ you for such an insight in ĺife straight after discharge. I didnt know about the no liftìng policy àñd have often thought about me ĺiviñģ alone. There's so much I haven't thought about.
Thanks,, julie xx
Just learnt another thing re the injections 4 hepatitis I need 4 my liver assessment. Apparently u have 1 lot and then week later u have another lot . Getting 2 c nurse at my docs who will do them but only in at certain times and days nightmare. Rang jimmys and spoke 2 assessment coordinater who said as long as booked in doesn'tmatter . It didn't help that jimmys sent my discharge letter 2 my docs old address so jimmys had 2 resend it 2 correct address !! X
On my discharge letter when I had my biopsy it was mentioned on that think it's something 2 do with infections. I have 2 have 2 lots apparently a week apart . Take care xx
hi, I see, well good luck for that, Ive had my fair share of needles as you have so will be thinking of you
speak soon
Julie xx
It's not just the needles it's the horrible bruising! ! Yes the lady from Ayrshire said it's to do with ur immune system so if u have cirrhosis they say u shud b protected. Like I said it's a lot 2 take in plenty of questions 2 ask at assessment x
It's the 20th of March going on the 19th with daughter who can stay in the room with me then action packed day after. Jimmys have been very good and I have spoken to the assessment cordinator who is looking after me. Xx
Gosh, only 2 days àftèŕ me so we will have à lot to talk about afterwards. It's ģood you hàve company as well. Just under a fortnìght and its all systems ģòiñg, look forward to an on going friendship, bèst wishes, julie xxx
Hey up julie
Have you not got anybody who can go with you, a friend, relative? Not essential of course but nicer because the two of you can discuss things and the other person can help you remember (preferably write down) the answers to any questions you may have. You either already have, or will be given, a little green book rhat tells you everything you need to know! It really does! I think I only went with one or two questions and found that even they were answered during the course of the Assessments without me having to ask anything 😁. Coolio!
Have fun
Miles
Hi r u going on ur own? Which hospital r u going 2? Yes defo keep in touch. X
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Update on Transplant Assessment 
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Liver Transplant Assessment appointment
Liver Transplant Assessment
