Hi everyone, hope your as good as you can be. Had my third appointment at QE Birminham and as I've done everything they've asked of me like giving up smoking and psychiatrist giving me a good report they are accepting me for transplant assessment asap. I was so pleased when he shook my hand and smiled. It will be premier inn near the hospital as I live in Wales. The next stage I haven't got a clue about. Can anyone tell me what to expect. Thank you, love julie xxx
Positive news at last: Hi everyone, hope... - British Liver Trust
Positive news at last
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jules45
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Delighted for you Julie, at long last. Fingers crossed for a speedy assessment and positive outcome.
Katie x
I cant tell you what to expect next unfortunately but I will say congrats and I'm so happy things are moving in a positive direction for you now! Keep that smile you have glowing bright!
jules45 in reply to
Thankyou for lovely message, much appreciated and i will keep smiling until I get the bill from premier inn, lol than you again, Julie xx
that's wonderful news and congratulations on giving up the smokes, I wish I had your resolve, or rather, I wish I had less stress and less need to do it. I shall be watching out for good news from you and fingers are crossed and crossed again. K
Great news Julie, and congratulations on giving up smoking, I gave up nearly 20 years ago, and I still rate it as one of my greatest achievements ( not sure what that says about my life since, but it was hard)!??
I'm having my assessment in Plymouth on Tues, weds next week. They provide accommodation in a lodge next to the hospital for Mon and Tues night. Do they not do the same in Birmingham? If not would you be able to apply for assistance, like you can with travel costs. Definitely ask someone about that. Maybe others that have had treatment at QE may be able to advise??
My first day has the Echo heart bubble test, a lung function test, a CPEx ( cardio pulmonary exercise test), ECG, appt with transplant co ordinator nurse, a dietician and the hepatologist.
Then the next day I have CT or MRI, EEG, endoscopy.
I think that's it. I had my consultant appt on 18 th Jan and tests are booked for 5/6 Feb. So fortunately not a long wait. If they think I'm a suitable candidate and its the correct time I then get invited to Kings College Hospital for information sessions, and other meetings with Dr's etc. As you are going to QE, all those things will happen as part of your assessment I would think.
Wishing you all the best, and I'll keep my fingers crossed for you.
Take care
X
Hi, thanks for the information, very helpful. There are flats at the hospital but No one has mentioned help with travel, perhaps info will come with my appt letter. Yes it was hard giving up smoking but it will hopefully stop my heart playing up under General. Used to go to derriford, had 3 wisdom teeth out. Nice hospital.
Once again, thankyou, julie xxx
Are you on Employment and Support Allowance Julie? If you are and are in the Income Based category you should get help for your travel costs and there is usually an overnight stay allowance too. You should look into this via your own health board - your local hospital should have a cashiers office onsite and people can claim help with travel expenses and out of area expenses (we used to get for travel to local hospital plus mileage to and from Edinburgh and also got some of our overnights paid for - we were taking a caravan over but other folks were using B&B and hospital accomodation).
Katie
I could not be happier Jules.
Stay strong stay fit.
Hopefully re-birth will come soon
Jaycee
jules45 in reply to
Thankyou xxx
Hi Julie, well done on your trip to Birmingham and getting this far! Fingers crossed for the assessment, really hope it goes well for you. Takecare xxx
Hi Jules!
I had my assessments at QEHB last year- March. Firstly don’t sweat about them - they are almost fun - really. Well, that is if you like meeting a few new folks. The first one dayer is just meeting the coordinator and a few others along with a few pretty standatd tests wich you have probably had previously if you have got this far! The only thing that I remember as being a real test, i.e. where you have to actually do something, is blowing into a tube as hard as you can. My lungs were pretty darn weak back then and it took me 3 goes before she said OK 👍. The rest seemed to be just lying on machines etc oh yes and of course the obligatory blood tests 😁.
The Assessment is in what they call the Old Hospital ajoining the New Hospital! We stayed in the Heritage Building which does cost some money and is pretty basic (but two very quiet TV lounges) and is only literally a three minute walk from the Assessment room. This was great for me because I could hardly walk! You get to meet about 5 or 6 other liver patients with their carers - except one who came on his own (apparently that is very unusual!) Meeting the others with the same problems as you is strangely very uplifting 👍.
Oh yes and there’s a buffet lunch in the same, smallish, room 👍👍👍. And as much tea, coffee or squash asyou want - help yoursef jobbie.
Days 2 and 3 were for me about 2 months later. Pretty similar more testing and meeting a surgeon (not the one who did the operation in my case, because there seem to be quite a few surgeons - thank goodness 👍), the anaesthetist (he failed me and wanted a sppecial test done - myocardial test - because I had hign blood pressure and diabetes - very cautious, quite rightly, but I had had those conditions for 15 years and been going to the clinic for 4 years so why wait until the Assessment? That cost me 4 months before I got on the fabulous List. Not really a moan but an observation 😁), the physiatrist (I think she was) about your “attitude” to things like drinking, smoking, about the operation, your support network, etc etc. We also had an informative video, and also a really interesting chat from a transplantee who seriously looked about 45 but was 60! The only thing he said was that he didn’t have any pain after the operation. Hmm he must have been a superman or something or I’m a wimp because, for me (and the chap opposite me i the ward) it hurt like hell for more than a week (and the rest) and still was hurting when sent home. Biut what else can you expect after a FANTASTIC operation like that!.
Quite a bit of waiting but in a very nice environment 👍.
So most people I think got told whether they would be put on the list there and then but I was told I would go on the list if my myocardial test was 👍. It was - 4 months later.
Anyhow - sorry I’ve gone on a lot. The process is very rewarding, I hope you find it so and good luck 👍👍👍👍👍
Miles
jules45 in reply to
Thank you so much miles, you've really helped me get my head around it. I may have to go alone, I'm not sure. So the process isn't as bad as I thought thank goodness. I've been through he'll getting accepted for assessment so this shouldn't be so bad. Will stay at premier in and get a taxi for the one mile as my walking not great.
Thanks for the info, much appreciated, julie xxx
in reply to jules45
It’s a pleasure. I wish I had found this forum before the TP. I only found out about it about a month later from my son, heaven only knows how he found out about it!
Miles
in reply to
PS - don’t worry if you go alone! You won’t be criticised or anything like that! I think the chap who was on his own was made rather a fuss of in fact 😁. He made us all laugh because he was an undertaker! Well you have to see the funny side don’t you 😁😁.
Miles
jules45 in reply to
Ha hà,,an undertaker who would have thought it.
It's all down to who's available at the time as its a ĺoñģ way from Wales xx
in reply to jules45
Alright jules what keyboard language are you using 😁😁
jules45 in reply to
Ìve got a dodgy tablet! My laptop is back tonight after being repaired xxx
in reply to jules45
I’ve got a didgy iPad as eee. Tends to double or triple type letters or not respond at all or selects the wrong letter.....very frustrating. But sometimes it’s perfect like nnnooww😁
jules45 in reply to
only just found your message I'm using my phone as it doesn't give out funny symbols. Samsung aren't as good as people think x julie
Hi
I had my transplant in the QEH in March 2018, the fist stage is the assessment nothing in its self a worry and the process of the Transplant is thoroughly explained, its the start of the waiting.
1 To hear you are on the list
2 For the phone to ring to say they have liver
Both challenges, but right now you have passed the starting line and great news you are on you way.
David
jules45 in reply to
Thanks david, was the hospital transplant staff kind and did you feel reassured before having the transplant that you would be ok? Thanks, Julie xx
in reply to jules45
They were fantastic, I never worried at anytime.
I now know what they do its a well rehearsed journey you go on, only at the end do you realise the whole story, you will understand once you go through the whole process and leave the transplant team and go back to where you started with the main consultancy team.
It is an amazing journey, one that changed my life, dont worry it will all be fine
David
jules45 in reply to
You've put my mind at rest so thankyou xxx julie
in reply to
Spot on David! All my fears vanished virtually completely because you could tell you were in great hands. 👍
in reply to jules45
I am pleased
I forgot to mention my wife stayed in a nice little bed and Breakfast really nice people close to the QEH used a local Taxi service to save any walking, one of the drivers would not accept payment and asked it to be donated to the QEH, one of the many things that made me see life differently.
If you would like details please let me know.
David
jules45 in reply to
Ill stick to pŕemier inn if partner comes with me. Do you have to wear tracksuit and trainers or normal clothes! Xxx
in reply to jules45
Normal clothes. But if tracksuit and trainers is normal for you... noone gives two hoots what you wear to be honest. But wear loose fitting or easily removable tops for blood tests/ECGs and the like. 👍
Best not to go in suit 😁 - well female version of suit. Omg I hate being PC.....
Miles
jules45 in reply to
I normally wear jeans and a top so that's helpful xx
in reply to
David - you are so so right. It’s sort of awesome. I think, waiting for THE call was the bit that, in the background, made me so much on edge. But lucky mucker me to only have to wait 8 weeks 👍. Re your later post it has changed my life absolutely as well 👍👍👍👍👍
Miles
So pleased to hear such good news - nothing new to add to the very comprehensive comments above. Once you're on the TP list then it's just a waiting game - it will feel like groundhog day but you kinda get used to it
Do you best to keep in good health so that you are well and ready when the call comes. Wishing you all the best for your future and your lifetime ahead of you on the other side.
Peter
Thank you peter xx
Càn I say a bìģ thankyou to all the supportive messages fŕom you all, ì am humbled and very greatful, thank you xxx
Thankyou Mary xxx
Am so happy for you Julie 🙏I wish you a speedy recovery and nothing but happiness for the future ❤ please keep us updated love gaz
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