Liver Transplant waiting list

Hi. 2 weeks ago after my final assessment, I received a phone call from my liver coordinators to inform me that I will be added to the liver transplant waiting list. I am still waiting for confirmation that I am on the list. Anyone know how long I will wait and what the procedure is? (UKELD Score= 46)

[AyrshireK]

We were just told that hubby was listed and that was that. We didn't have to complete any paperwork or anything just a verbal you're on the list. (This was at the Scottish Liver Transplant Unit in Edinburgh though it does differ from centre to centre).

We attended Clinic aapointments every 5 - 6 weeks to be monitored and following each clinic they then work out highest priority folks at weekly meetings. If your UKELD is only 46 that is actually too low for listing in UK (threshold 49 but I guess your transplant centre knows what it is looking at in your particular case - UKELD does get ignored where there are other mitigating factors).

You'll just wait now. Try and keep yourself as healthy as possible to keep your heart and lungs healthy, keep your weight up and look after yourself. Check if your transplant unit has a pre-transplant support group which will help you with 'living on the list'.

Wishing you the best of luck.

Katie

[Hidden in reply to AyrshireK]

Thank you Katie for you advice and help. I phoned my coordinators last friday exactly a week after the assessment, they informed me that I should receive a letter by post and a phone call, so I am confused. On 26 Feb I have an appointment with my liver consultant with reference to my TACE so will ask him. I will keep in touch.

[AyrshireK in reply to Hidden]

Now understand why at UKELD 46 you are being listed since TACE is to treat a tumour isn't it?

If you were expecting a letter then you should have had it now that 2 weeks have passed. Perhaps give them another tinkle ............ you should have their number even for enquiries since I know we were meant to ring if hubby got a cold or visited doctor etc. Edinburgh certainly didn't send out a letter.

Have you got a date through for your first transplant clinic appointment? Shouldn't take long because it is usually about monthly or 5-6 weeks and you're two weeks into that already.

Best wishes re. the TACE. I guess they will want to move fairly fast with that.

Look after yourself and yes do keep in touch - good place for a rant and support on here.

Katie

[Hidden in reply to AyrshireK]

Hi Katie. My first clinic appointment at Queen Elizabeth Birmingham is on the 2nd March. It was my second TACE to treat a tumor which was performed on 8th Feb and successful. I have also got Cirrhosis and Hep C. The surgeon I met on the assessment explained to me that I won't wait as long on the waiting list because I am AB Pos (4% population) which means I can accept any blood group ie: O, A, B and AB groups

[AyrshireK in reply to Hidden]

Fingers crossed for you Dave.

My hubby has cirrhosis due to AIH - he was on the transplant list for 10 months but actually got delisted after an improvement in his blood test results. He is O+ and only ever borderline for transplant. He continues to get monitored at Edinburgh incase he deteriorates again.

Really rooting for you, hope you don't wait long.

All the very best,

Katie x

[Hidden in reply to AyrshireK]

Thanks Kate for your support. Seems that your husband has gone through the mill, hope all that waiting, assessments and tests work out for him in the future.....................Dave

[Angelsww in reply to Hidden]

Hi Dave I was assessed 6 weeks ago at QE's and it took them 2 days to tell me I was on the list, but the official letter with all the numbers and do's and don't;s took about 3-4 weeks to come to me. I am O Neg, so can only accept O neg which apparently Birmingham are short of right now. My UKELD is 49 and I am on the list due to my hepatic encephalopathy so I am envisioning  a long wait Good luck on your journey and hope you don't have to wit too long

[GrannyDoll61 in reply to AyrshireK]

My husband is waiting to be listed in Edinburgh. He has had 3 t.a.c.e so far and is trying hard to gain enough weight.Hopefully be listed in the next month or so.Tense times but we will enjoy Christmas with our family and stay positive

[retwos in reply to Hidden]

Hi mate when I was told I'd be put on the list . They told me it takes a couple of weeks to be activated mate , it's not straight away n your ukeld you say is 46 so they would have told you you would be on the urgent list , strangely enough my blood groups AB n I'm in the 4 % . This means that you have a good chance of not waiting to long as there's not many in your group , they didn't tell me that you can except any blood group ? I don't get that bit but could be wrong , your there on the second that's to see the blood docs I presume, they will tell you a lot more than I , from being activated in May 2015 to having my transplant Aug as you can see , wasn't long the only difference I was priority, hope all goes well for you , just keep yourself in a good place n on a good diet ,no salt !! Keep restin n smile on through , the road in front is waiting for you to step on n start your new journey , good luck to you )))

[AyrshireK in reply to retwos]

Just to point out although Dave only has a UKELD score of 46 which is low he is receiving treatment for liver cancer tumours and in that case UKELD is largely ignored as a deciding factor for listing and/or deciding priority. He's likely to be higher priority than those with even high UKELD owing to the cancer.

Wishing him all the best for a speedy call and successful outcome.

Hope your own recovery is coming along a lot better now Retwos. All the best.

Katie -

[retwos in reply to AyrshireK]

Wow feel like your telling me of !! I had the same medical symptoms as he had so I would have thought what I commented was about right , I would say something I didn't know about ,I don't do Google , just my opinion

[retwos in reply to retwos]

Plus the reason you have a ukeld score is a big part of priority/ urgent , or the consultants on my assessment lied

[AyrshireK in reply to retwos]

Sorry, certainly didn't mean it to come out that way.

I was just clarifying the UKELD score issue - other readers might not realise how someone with a 46 score can be listed when the minimum criteria for listing is 49 - in this case it is due to the tumour issue and perhaps raises his priority even over those who score higher. UKELD gets largely ignored when cancer is the issue.

Apologies if it came across that way - type without body language and expressions can do that.

Do wish you all the best and I am going to use a smily face 'cos I wasn't trying to be nasty or anything

[carmik]

Which hospital are you under?

My hubby received a call when he was told he had been listed and that he had an appointment the following week to go for an induction meeting.

The letters followed immediately.

This was at Kings College four years ago.

He is same blood group as you and waited 9 weeks.

Good Luck, Hope all goes well as soon as .

[Barnetaccounts]

I have been on the list at the Royal free for 9 months. I have had 2 hepatic embolisations and am due a 3rd on 7th March. Other than the tumours I have been in really good health and haven't git a clue what my MELD score is. I have had a resection (2years ago) and the cancer returned, thus no options left but the list. They have managed my liver well, and have been very reactive if something looks like it is going to upset the plans. I am blood group 'O' and my Bmi is 38. They appear to put a lot of weight ( sorry about the pun) on my BMI, and it is monitored very carefully. I am now suffering with incredible fatigue, which I will be discussing with them on Monday. Just keep strong as the waiting is definitely the hardest part. Average wait for my blood group and BMI is circa 20 weeks. I have been waiting 40 and counting. It is definitely a game about patience, faith and believing it will all happen when it happens. Keep yourself healthy and strong and enjoy every day.

Ray

[dckimberly]

Hullo!

I was/ am a patient at Addenbrookes Hospital. They may do it different in other transplant centers.

I was assessed during a three day stay at hospital. This assessment has been set up three months prior. So, from Wed. To Fri. They ran all these tests. Then they came in on Friday afternoon, and told my partner and I that my KELD /MELD was borderline, but that they felt it was time for me to go on the list.

That was last Feb.

then they sent paperwork, which I signed, and then sent back. I thought I was on the list all that time.

I got a staff infection through my pic line, and was hospitalized for a week.

While I was in there, my transplant coordinator came to see me. It was the first time I met him.

I said, wait, am I not on the list? No he replied and produced the same paperwork. I said I filled all that out, and he said, yes, but you need to go over it with me. So we did,which was good. He answered all my questions and concerns.

So, make sure you find out how they do it at your transplant center. After I signed it then, I said how long will it take now? And he said,I'm going to add you right now. So consider yourself on the list, as of now.

That was in late June. It's funny. At the Addenbrookes site it says on average you wait about 120 days. I just laughed at that..but, sure enough!

October 18th came and we got the call. I had my transplant on the 19th.

That was the first time I met my surgeon..lolol. We thought, oh, he seems so very nice, answering BG all our concerns.

(Turns out, he is the top liver transplant surgeon in the UK, possibly in all of Europe.. A real rock star, if you will! Talk about grateful.)

***ok, and this is important, prepare yourself..your first phone all, or second, eat, they will tell you, come repaired, but be ready for the fact that this may not work out. They don't know for sure, literally in til the last minute if the liver will be ok. That's just how it is.

My patient had a blood clot somewhere, so they had to get it checked, but I was prepared to go home. In other words, don't get your hopes up. Often, the first time they call is not going to have the right donor or liver. Just prepare, emotionally for that..and your partner and family should also.***

Surgery was 9 hours, that's about average. From there I went into ICU, then they put you on this next ward, for transplant patients, kind of a step down proceedure from highest care to the ward. I was there three days. And then onto the ward for four weeks. About 21 days is normal, but I've known folks to get out in just nine days...but I think that is crazy. You need time to heal. Seriously, it's a huge operation, and they tell you that, while your in there. It's painful, very. But they give you a lot of drugs and a button you can press that gives you more, lol.

I got excellent care. From start to finish. I can't believe how blessed I am, how truly grateful...

Forgive long reply..I talk too much, Lololol

Cheering you on, and wishing you a short time on the list!

xxxxxxxxkimberly

[Brummi]

Hi, waiting time on the waiting list depends on a few things like availability, compatibility and how severe you are. My waiting time once on the list was only 8 days, but I was lucky and a liver became available. Other things that are consider are the liver donor and recipient are about the same size and weight. All this may sound scary but tackle problems as they happen and not all at once, try to remain stress free and chat to folk on here. Good luck..

[provogirl46]

My husband waited 17 1/2months but was told the wait could be 18 months because of his blood type, o negative, and condition. He just celebrated his one year gft of life. We are very grateful to the donor's family and the excellent staff at King's College. He was in the hospital for four weeks due to complications and readmitted twice, once because of rejection and two weeks later, sepsis. Then he got shingles and still has nerve pain, almost a year later. He has more energy though thsn he has had for years.

[Hidden]

Thank you everyone for your replies and help. Still quite shocked to see so many getting involved in these topics, more active than I initially thought. You all have been of great help and given me much support and confidence. Queen Elizabeth Hospital, Birmingham phoned me to say that I will be active on the transplant waiting list on Monday 29 Feb 2016. So feeling much more relax now. Thanking you all again............Dave

[Mick1960]

Hi , I was told on the 6th oct then in to sign paper work on 17th, it's hard waiting for the fone to ring

[dougalgromit]

Hi my husband was placed on the transplant list on Tuesday 16rh of June and I am very pleased to say he had a phone call last Monday saying they found a match and last Tuesday morning he had his transplant he has now come out of hospital and doing well we will be forever grateful to that person who gave my husband the precious gift of life hop that helps x