Well I've had my first visit to Kings and my first chat with a liver specialist. Although I don't particularly feel any further forward as yet the consultant I saw, Sarah, was wonderful and took the time to explain everything thus far and did her best to explain what's likely to happen. Although no decision has been made on if I need a transplant yet she was very patient with me as I muddled through my questions. Didn't feel rushed at all.
So more bloods have been taken and basically, if I've got it right, she wants to discuss my case with the team there before making a decision.
So it's more waiting but at least I'm now seeing a specialist as opposed to just my gastro, (no disrespect intended)
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Identity75
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Hi , well at least you have been seen now , I would feel the same , maybe a Bit deflated as you are still no further forward that maybe you were expecting , sounds like a nice lady . I'm sure that they have your best interests at heart . I'm still waiting on my first appointment at the QE in Birmingham but I am not classed as urgent , all I wanted was a scan as its been two years since my last one when I was discharged from hospital . I'm sure all will work out for you .. Best wishes. Linda
Yeah a little deflated, it might sound wrong but I was kinda hoping they were going to say yes we're going to get you on the list. At least then I'd know.
What will be will be. But I just want to know. Lol
No I can so relate to that . I have been in situations expecting what I was hoping to hear and not getting it lol .. Think we need to have a little patience 😉.. I'm sure you will find out soon enough
Identity75, getting on the list is a longish process. You start off with the initial consultation which you've had now, they'll decide now whether they think you are at or nearing assessment stage. Assessment differs from centre to centre - some do it all in one week whilst others do a bit of in and outpatient stuff. Kings do the latter I think. There are lots of tests, chats, discussions, education inputs all to see if you are poorly enough to need a liver transplant and then at the same time healthy enough to get through the procedure. Once the multi disciplinary team have all your results and statistics etc. they will make the decision to list or not. Kings then (I understand) have you back in for a day's education before you sign paperwork to be added to the list. If you don't get added you will get discussions as to why and then should be further monitoring to see if the situation changes.
Thanks Katie, makes sense. I guess I'm just being an impatient patient. The consultant briefly went through the testing stage. They said it was five days and could either be done as an inpatient or on an out patient basis.
I just don't like all the not knowing. I'm the kind of person that likes to know what's going on and when. That way I can sort it out in my head and make plans.
I'll get there eventually. Much twiddling of thumbs.
Sarah Hughes is lovely, I had her for a bit whilst prof o'grady was away. There is plenty of info on here about the assessment when the time comes, it's all pretty straight forward.
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