Royal free transplant

[Urbanblanks]

Hi there was trying to find out if anybody has had an assessment or transplant at the royal free or kings and if so which they thought of them as the criteria seems a lot more vigorous at King's if anyone can help I would be obliged many thanks

[chugalong]

Hi,I had assessment last year and a transplant in March of this year at King's. And well as will be attend Kings post transplant and will continue to do so. I am here with a better quality of like due to the thoughtfulness and kindness of my donor and their familly, and very much due to the excellent and very thourgh treatment given to me at all stages and from everyone I have had and still having dealings with, they are great. Hope all is just as well for you.

[freddie76]

Hi

As far as I understand all the transplant units have to conform to the same procedure for assessment. If some were more lenient than others it would cause many problems.

Transplants come under one particular body within the NHS no matter where they are done.

Why do you think the criteria at Kings is more strict than at The Royal Free.?

[dckimberly]

Curious..what do you mean More rigorous? I thought the assesment was standard across the board..for a level playing field?

I think sometimes a person might need more testing in one area, if something is not as clear.

Can you possibly supply info on what you mean?

Thanks!

xxxx

[Urbanblanks in reply to dckimberly]

Hi to all my post was just about the criteria because the r/feee which im under seems to not have asked my gp for so much info and have left it down to my cosultant more yet kings what ive seen of there criteria seem towant a multitude of things done by my gp who is not to great by the way I just thought that they would of done all thesethings thanks to you all talksoon b

[dezzza33 in reply to Urbanblanks]

Kings & Royal Free use different methods of checking the fitness to check sutability of transplant ive been to both now on Kings transplant list

[LAJ123]

Everybody is quite correct. The department of health have a set of guidelines that all transplant centres have to adhere to. When you undergo the assessment the tests will be exactly the same wherever you are. Following the assessment they may be concerned about certain areas that need to be considered further. In my case I had to return for further tests because of my diabetes, this was a stress echo-cardiogram as well as the normal echo-cardiogram. Also, as I had a history of alcohol induced liver failure it was necessary for a further period of counselling and assessment to discount any possibility of resuming alcohol intake post transplant. All of this was very difficult and stressful on top of being ill. But I knew the Royal Free had to ensure that all of the efforts of the transplant team where directed to giving a donated liver to somebody who would make good use of the huge effort involved in a transplant and the aftercare. It should be noted that in the case of a split / close decision about listing for transplant, there is a system were the decision can be reviewed by another centre. Whichever centre you go to you can be assured of rigorously regulated and compassionate care.

Jim

[LAJ123]

Also, the transplant centre have to ensure that the very limited number of donated organs go to what is assessed as potentially a successful outcome. Liver transplant is a strange thing, you have to be ill enough to need one but well enough to survive the procedure. A very narrow path to walk. Finally the person who donated the organ and their family must know their donation will be respected by making the right decision.

[Ruswati]

Hello, I had my liver transplant at the Royal Free Hospital, prior to that I had a lot of my assessment done at the Bristol Royal Infirmary who liase very closely with the Royal Free. I went for the last part of my assessment to the Royal Free who then had their Friday meeting and made a decision, it was all very rigorous. Post transplant I was seen on a weekly basis for the first month at the Royal Free but am now under the care of the BRI again, I know that if they had any major concerns I would be back up to London before I knew it, however so far it has been very successful.

[bustabo]

hi i am sorry to hear that things aren't good , however on xmas day gone i was at colchester hospital with serious bleed from my esophagus xmas eve my family were called to say bye and i was put in an induced coma i got moved to Royal Free where i had the best care going , they are so up to date with major liver problems i eventually was nursed back to normal, if it wasn't for them and there knowledge i don't know where i would be.They are very professional and i actually owe them my life, so when it comes to comments on the Royal Free i can't spk more highly of them. Maybe that was no help but i hope it gives you a sense that whatever it is they are doing they do it the best I wish u happiness and health .Jackie

[Liverlover]

In my case the whole of the assessment was done in house at the Royal Free. Generally it went smoothly and the liver transplant coordinators were very helpful. Since I live quite nearby I was able to go home every night which was great. Can't speak for what goes on at Kings! What I can say is that I was one of those cases mentioned in an earlier post ie I was ill enough but not too ill for transplant.

[Urbanblanks in reply to Liverlover]

Thanks for that I thought on the assessments you went up there every 1 or 2 weeks or so maybe I've got it wrong lol

[Dulux]

I'm awaiting my assessment, at Kings I have been told they want me to do it as an out patient, so instead of 5 days on the ward I can do a 1+2 day. There is a list on the British liver trust web site, but I have had a lot of these tests recently, so I imagine it's a box ticking exercise for them, well that's what I'm hoping for! I rate myself as fit and healthy apart from my liver obviously, I'll let you know what they do and don't do, although it must vary slightly from case to case.

[Urbanblanks in reply to Dulux]

Ok yes thanks that would be great I wouldn't put myself down as fit healthy to much going on this last year also my help c treatment failed so fed up with that still onwards and upwards talk soon ricky

[Dulux in reply to Urbanblanks]

Have heard this morning, they are doing me as an in-patient, well at least this means I may get some quality time with the drip!

[nickiwj]

I had my assessments at a Royal Free at the start of June. They were spread over two days and I stayed locally at a hotel as I not live near the hospital.

I had recently had a lot of routine procedures carried out at my local hospital (no more than eight weeks prior to my assessments) p. My consulant and new consultant I am now under with the Royal Free work together and we're happy to use recent results. I did undergo very lengthy leafs over the 2 days and they were very early starts and late finishes each day which was draining. EEG, ECG, Echo, lung function, blood grouping blood tests, and then more blood tests, dexa vine scan and full body scan etc etc.

I had meetings all scheduled with dietician, surgeon, anaesthetist, liver team co-ordinations, doctor oh and an "education session" which you must attend with your next of kin.

This was the mon and tues and it was decided on the "Friday meeting" I got my call on the Friday evening to say that the decision was to list me.

I can't fault the organisation of the whole team, the willingness to answer questions my husband and I had. Everyone was really nice and supportive.

Anyway, I am moving house in next 3 weeks and then I need to ring liver team to "activate me" on the list 😩

They decided that no-one can handle completing on a house, moving and waiting for a call at anytime.

I'm nervous about the next step but know how incredibly lucky I am going to be to be given such an amazing gift from an incredible person and family.

I have PBC (10 years) and it's my bilirubin that is the main concern. Last BT is was 144 but was at 174 in April. I am suffering with the jaundice eyes and notice it I'm my skin now and generally feeling unwell.

Good luck with your assessments. Nicki x

[Urbanblanks]

Thanks for that I think I might do the same in booking a hotel for a couple of days which one did u use