hiya to all those that chat to me .... they have decided it's time to get the assessment started... part 1 at Queen Elizabeth on feb 20th...feeling scared and excited all mixed together. lm assuming that you have to have all the tests e. g ecg xray etc etc before they decide if you are eligible for part 2?????
anyone done q e assessment recently?
cheers cazer.
Hi cazer, I didn't have my assessment at the Queen Elizabeth but at the Scottish liver transplant unit in Edinburgh and it is Monday to Friday in the ward , big meeting on the Friday and decision made if you are to be listed. If I'm honest there is a lot of waiting around on the ward in between tests and meetings so make sure you take iPad or books and magazines and stuff. I'm pretty sure you will have had most of the tests they do at some point so don't worry too much there is nothing that's too bad , I found the fitness tests a bit of a struggle but think that's to be expected as long as you can do them you will be ok , good luck and if you have any questions I'm more than happy to help, in the meantime look after yourself 🌸
thanks for your reply... it is 1day of tests... chest xray ultrasound. breath test. ecg and a couple more i think then you go back for 2/3 more days later on.. for other stuff. just assuming that if first batch are not okay then you cannot get on part 2.
im okay about tests but worry about the fitness side as ive had pbc for 18 yrs and had awful fatigue all that time so not very fit... was it a treadmill ? thanks cazer.
They will factor in your condition for the cpet test, some are done on bike some are treadmill, just go in and do what you can.
Hello again cazer, try not worry too much about the exercises it honestly isn't that bad , it was an exercise bike type thing that Edinburgh had , I had to have a break because my legs just refused to work haha, but seriously look on the assessment as a positive thing because you get to meet all sorts of specialists and have the opportunity to ask loads of questions , you also get to meet people who have had a transplant and are doing well so whatever the outcome it is a positive experience, take care 💜
hope so also have gy nae problems so bike would be a nightmare!!! sorry probably too much info. cazer
Don't worry about it, nothing fazes me anymore, do you have jaundice, that was the main thing that raised the red flag with the consultant for me , I didn't have a lot of the symptoms that a lot of other pbcers have, I was diagnosed 14 yrs before my transplant 🌺
feel free to message me any time if you want to chat and let me know how you get on 🌼🌸
My Husband had his assessment at the QE in july 2016 and got listed last week.
Day 1 is a chat with transplant coordinators getting basic details contacts etc. The he had a lung function test, ECG, heart echo, and a really thorough abdomen ultrasound. They also took 10 vials of blood testing for everything and anything you can think of and a urine sample.
They test these and if you 'pass'. As in they don't find anything drastically wrong or your bloods are OK they will invite you for 2 days.
This is really intense. The first morning they go into depth about the transplant, aftercare, what to expect when on the list, how the liver works and meds afterwards. Then we saw a heptologist, surgeon and anethiatist. It was a long day and we left completely exhausted.
Day 2 is less intense. We had another chat with the tx coordinator. We saw a dietician and a nurse specialist as his liver disease is alcohol related. The afternoon was a talk from the liver support group with someone who has been through it and 15 years post transplant that was fascinating.
Then on the Friday we had a nervous wait to see if he was listed he wasn't at that time as they had concerns about his heart. He had to see a local cardiologist who signed him off just b4 Xmas.
About the cardiology. He had a MRI cardiology stress test. This involved a drug being injected whilst he is in the MRI scanner to speed his heart up. Then a drug swiftly followed to reverse the affect. Hubby said he felt awful for a few minutes like he was having a heart attack but recovered quickly.
This was our experience anyway. The team is lovely so helpful.
Take someone with you as they want to meet your 'carer' for after the op it's pretty important.Good luck.
Xx
thank you so much for the info that's really helpful and good that iits same hospital.. what was breath test? thanks cazer.
It's a ' spirometer' I'm not sure how to spell it but it's a machine you blow into that measures your lung output. Husbands result wasn't great as he had the ends of a cold but they weren't too concerned. Xx
Plus if you haven't been to the QE yet it's amazing. The new part is just stunning. Kind of geeky but I love it. X
Forgot to mention you get a meal voucher for the restaurant on day 1 for you and carer. It's always a bonus. There is a lot of waiting around between tests though. Xx
Yes I've been going for long time.. Do agree as hospital s go it's pretty impressive..Glad it's just spirometer test as I've had one of those before so that's reassuring. Is he on list ? Thanks darkmind useful info.cazer.
Yeh he has been listed for the last week and a half. Most of the tests hubby had were pretty none invasive it's just exhausting both physically and emotionally. If Samantha is running the session she's fantastic can't do enough for you. Good luck. Xx
So we might see you there if I make it in list!
Good luck with the wait.xxcazer
Good luck. Let me know how you get on. Xx
Hi cazer ! Great news that your on your way with the tests . I too have my first appointment at the QE on the 28 Feb . Have been QE before but that was 4 yrs ago when dad had brain cancer . Not yet been in the new one yet but I must say I Am a bit apprehensive but looking forward to it , hope things al turn out good for you !!! Regards Linda
Cheers.x cazer
PIP assessment 
Pips Assessment.
Transplant assessment.
Liver Transplant Assessment appointment
