Life on transplant list: Hi everyone... - British Liver Trust

British Liver Trust
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Life on transplant list

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Hi everyone

Just like to get peoples thoughts on how to go about life whilst on the transplant list.

I had my first call yesterday after only 3 months on the list and unfortunately the donor liver was not viable in the end.

The experience has left me in a position where I feel I cannot go anywhere further than an hour away from home.

I have a holiday booked in a couple of weeks and I’m seriously thinking about cancelling it.

Transplant coordinators have said to try and lead a normal life and go about things as normal, but I just get the feeling I may miss out on potential donor.

Anyone else have similar feelings?

Thanks

24 Replies
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Hi pilot

Am also on the list and have been for 17months and had my first call around 9 weeks ago, it’s hard very hard to lead a normal life I’ve find I can go weeks even couple of months where am ok ish but then wallop it hits me and find myself questioning why me why the wait why is life like this but I’ve found by speaking with family and friends is a massive help but on here you will find people who really understand as they are going through the same I’ve struck up a fantastic friendship with a couple of people on here as well as very good advice from many more so please voice your concerns/frustration sometimes anger on here as you won’t be judged .

As regards holidays your coordinators will probably encourage it you can go a few hours away from which ever hospital your under and they will make a note of it against your name saying something like 4 hours away just make sure you give them plenty of contact numbers or you can come off the list for your duration of your holiday.

Good luck with your journey

Huw

Chelle_
Chelle_
in reply to 1football

ha ha your the 'friend' I wrote about in my reply. We must have been typing at the same time!!

1football
1football
in reply to Chelle_

Dito 😂

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in reply to 1football

Thanks for your input Hugh.

I think I am in a very similar boat to yourself although I have only had to deal with diagnosis for the last 6 months.

Seventeen months is a long time, have you been relatively well throughout ?

Hopefully it wont be too much longer for you.

All the best

Pilot

1football
1football
in reply to Hidden

Yes I’ve been one of the lucky ones I’ve had 1 abilation and 4 embolisations on my tumours to keep them under control and although I have cirrhosis from hepatitis c which I’d been carrying undetected for 35 years (tattoos)docs believe, my liver is coping fairly well so I can still lead a pretty normal life although I do get a lot of lethargy and extreme tiredness

Pilot,

I have been on the list for 18 months so far with no calls. I have come to realise it's important to live life as normal as possible. I still work, I go out for days out with my family, I had a three week holiday in the UK last year and remained on the list the whole time. I last year I undertook 3 courses with work. This year I have taken up another course but it's for my benefit. I go to the cinema once a month, food with my friends, sopping, walking etc. I live my life as if I am not on the list. If you over think about it you could be in a crappy state.

A friend of mine on here had his first call 8 weeks ago, transplant didn't go ahead. If he had the same thought as you he would have stopped being him for a while. Instead he picked himself back up and got on with whatever he could. One call for him in 17 months.

Please please carry on as normal. Look forward to your holiday. Your transplant will come, when you least expect it (that's what I am told most of the time anyway) Live your life. If your next call doesn't come for another 8 weeks you would have missed a potentially good holiday and well deserved break. You don't need to come off of the list depending obviously where your holidaying.

Good Luck!

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in reply to Chelle_

Hi Chelle

Thanks for your kind words. You are right of course, one should try and lead a normal a life as possible even though our circumstances are difficult. I'm going to take my holiday and try and enjoy it for my wifes sake as much as mine.

I hope you are holding up well, after 18 months you must be getting very close now for that call. I wish you all the best.

Pilot

Hi Pilot,

I spent 18 months on the list before I got 2 calls within a week. 2nd one was all systems go and I was prepped and taken to theatre. About an hour later they were fighting desperately to keep me alive and get me up to ICU due to a massive haemorrhage. My wife and kids were told had I had less than 24 hours to live and things were extremely serious and to take things hour by hour. That was all 18 months ago, not only am I still here but feeling really well. I was removed from the list at that point and the length of my life will be determined by my poor old diseased liver. During my time on the list I did take myself off and took a short break in Rome. I can remember the mental torture I put myself through - “ should I or shouldn’t I” “ What if the right liver comes along” etc etc. But for me, and I am only talking for me it was the correct decision, as the waiting was really playing games with my mental state, I desperately needed to reset my brain and it worked perfectly. I know they have just changed the criteria for the selection of recipients but don’t know too much detail, and on this issue the call is always going to be yours. As you have already had a call, choose somewhere to go for a break in the uk. Speak to your Hepatologist to determine how far away from the centre is ok. Do a bit of research regarding mobile signal at your destination, something I always failed to do. Just on the list went to The Cotswolds to a wonderful spa hotel, it was like being back in the 1980’s standing on a chair frantically searching for one bar of signal. Then we had a family Christmas in a big house in Somerset again it was the dark ages. My hepatologist always used to say to me where are you thinking about going, ok we can get you back from there if needed. I’ve written a blog about my cancer journey and it can be found at 1liver1life.wordpress.com my first foray away is in the post labelled “The first week flys by” I have just reread it and it is like it was yesterday not 3 years ago. Keep the faith and it will happen for you. The hardest part has been achieved , getting on the list in the first place.

Ray

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in reply to Barnetaccounts

Thanks for that Ray, I appreciate your input.

You certainly have been on a rollercoaster ride. When I get the opportunity I will take a look at your blog.

I booked my holiday to the Canaries, thinking it may be the last opportunity to go abroad before my treatment. I'd only signed the consent form with the surgeon 3 weeks ago and had asked him about the chances of being called before months end, which were slim he thought, so i booked the bloody thing.

Since my false alarm last week I'm finding it difficult to adjust, everytime the phone goes my heart misses a beat, always checking phone battery and signal....etc, Im sure you know the drill.!!

Hopefully things will start to return to some sort of normality soon, but I do know that life goes on and I should carry on living it whilst I still can.

All the best

Pilot

Barnetaccounts
Barnetaccounts
in reply to Hidden

Hi Pilot, you understand that life is no dress rehearsal. Yes you could get the call soon, but maybe you will not. We just don’t know. Take the break, recharge the batteries and try as best you can to keep calm. I was just the same as you, jumping at every phone call etc. Until one day my wife said if it rings, it rings. I look back now 18 months later and think maybe, just maybe I didn’t really get the rough end the worst tablet taker on the planet. I struggle with 2 water tablets. My mobility has become impaired but that’s why they invented mobility scooters. I will keep on planning my trips and as long as my health allows will look forward and then thoroughly enjoy them. Next one in November then 5 weeks in Florida with my kids and grandkids. Onwards and upwards.

Ray

My hubby got the call at 16.30pm and was told to be in the ward by 2200.He didn't get taken down to theatre till 4.am.Hope this helps. He was listed on 20th Feb and got the call on 23rd but was very ill.

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in reply to GrannyDoll61

Thankyou Granny Doll

I do hope your husbands transplant went well and he is on the road to a full recovery.

All the very best

Pilot

GrannyDoll61
GrannyDoll61
in reply to Hidden

His transplant went very well. He got out after 8 days.He then went for a walk and fell over breaking a rib but he was lucky not to have damaged his liver.Back driving now and still progressing well. Potassium levels up to 52 so watching what he eats but the transplant team pick up on everything straight away which is very reassuring

Completely feel this way. I was supposed to go to a party about 2hrs away from home but even though my donor chances are small I don't want to risk not being at home.

Other wise just carry on. Don't cancel your holiday it will do your brain good to be distracted for a bit. I do go on visits to places but haven't had the nerve or money to have a proper holiday. So go & live it up. Xx

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in reply to Dudewheresmyliver1

Thanks Dude ( like your handle btw) :)

Unfortunately this holiday is a 4 hour flight away so I will be taking myself off the transplant list for the week.

Im going to try and enjoy it but I know deep down I'll be thinking whether I've done the right thing and counting the hours down to when we land back at Gatwick.

I was saying to my wife how we haven't really explored our own beautiful country, so in future its going to be holidaying in the UK for us.

All the best

Pilot

The transplant teams are hoping you are going to lead a normal life. As long as you are contactable and in UK, there is going to be no issue.

If you are staying away from your own area just let them know. I am based in Bristol, I had my transplant at Kings, they have collected people as far away as Belfast and Scotland.

I would take your mobile and a second contact number, give them details where you are and enjoy your holiday.

Best wishes for the future.

Paul

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in reply to Paulwil

Thanks Paul

Thats good to know as I have most of my family in the North East and I am in Kent, so I should be able to continue visiting them whilst waiting.

I understand you had your transplant last year.. how are you doing?

Best wishes

Pilot

Paulwil
Paulwil
in reply to Hidden

I am doing really well thanks, I am only going to clinic in Kings every 2 months.

Best wishes

Paul

Hi my wife is post transplant and i know how you feel very difficult to know what is best to do, I would recomed that you talk with your transplant team they will be able to tell you how important it is that you have the transplant, to wait as long as you have i would think you will be okay to go away on holiday and have a good relaxing time just tell you team when you are going and how long it will take for you to get to them.

My wifes was quite urgent she was very ill and only waited 3 months and it was the fourth call that got the op done

You will feel great after it is done I went and visited my wife the day after the op and asked who was in her bed at she looked at least 10 years younger

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in reply to X19Dave

Hi Dave

Thanks for your reply

Im happy that your wife has had her transplant, it must be fantastic to see the sudden improvement in her health and appearance.

It does seem that many people have to go through several false alarms before finally getting the operation....my coordinator at Kings told me the record is 18 times.!!

All the best to yourself and your wife

Pilot

X19Dave
X19Dave
in reply to Hidden

Yes she had a few, one she got called in sent home as it was no good got about half way home and got called back again and that one was no good either, my poor wife realy went through the grinder first transplant did not work she had to stay in intensive care on dialasis for 5 days had the second transplant all good and happy 8 days later she had a stroke but she is all okay now

Keep hanging in there your time will come

I think the call really brings it home. We only waited 16 days for my sons call but that was a false alarm and the next day I couldn’t stop checking my phone and felt really on edge. It’s like after having a call I couldn’t settle? Luckily we had the next one 2 days later but I agree you do have a decent amount of time, we got the call at 4pm but he didn’t go to theatre until 3am and while there were a few tests on arrival most of it was just waiting!

Hidden
Hidden
in reply to Danisleigh

Hi Danisleigh

You are right, the call certainly brought it home to me. I was so shocked and running around in a gibberish state until the ambulance arrived.

I arrived at hospital at 0300 and was waiting around until about 10am before they called it off.

The whole experience has left me on edge and like you say, I can't really settle or relax.

Glad to see that your son got his transplant so soon after the initial false alarm and I do hope that he made a full recovery.

All the best

Pilot

Hidden
Hidden

Hi everyone

Thank you all for your kind words and advice it is much appreciated.

I haven’t really been able to reply as I’ve been away at a funeral and haven’t had access to my computer so apologies for not replying individually yet.

Once again thank you

Pilot

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