Second time... Unlucky

[pear-shaped]

We had another call, early Monday morning, 3.30am, only to be told at 2.30pm that the donor liver was not suitable... It is quite heartbreaking as well as a cocktail of emotions... Hopefully 3rd time lucky

[jamieh]

Hi it was 3rd time lucky for me I also had 2 false alarms whilst waiting for a liver transplant keep strong and positive !

[Hidden]

Really sorry to hear that and can understand the reaction. You do know, however, that you are near the top of the list. Best wishes for a good result next time. Mike

[morris33]

my husband was very lucky 1st time but he wouldn't have been here now hope u get one soon sending prayers

[Jtxx]

My mum was 2nd time lucky in the space of 4 days. Now you are at the top of the list hopefully it will happen soon for you. Try to stay positive and good luck. Thinking of you and your family. I know what it's like from their perspective. Keep well. X

[wadey]

My husband got called on Sunday night for the first time since being put on list in December 2013, unfortunately the donor liver wasn't suitable it was such a rollercoaster of emotions during the 4 hours we waited to be told the transplant wasnt going ahead,although very diappointed we felt a bit more positive in knowing that you do get called as we were starting to believe we wouldnt and we know what to expect now with regards to waiting/tests etc at the hospital.I see from all your comments re position on list does it really mean that people are near to the top of the list in this case when they get a call or does it mean noone else was suitablely matched for that donor liver at the time? Good Luck to everyone who is waiting with us Laura x

[ancientadolescent]

I do not know how long you have been on the list. I waited for 18 months before my turn arrived, so try to be patient and your wait will be be successful. I wish you the very best of good fortune.

[florrie505]

Hi there,

I was on the list for 5 months and as you know you go through every emotion in the book. I became such a different type of person because all I focused on was "getting the call", everything else in life just did not matter at the time. I was getting paranoid and kept checking the phone if it was still working (as I had a brick that was very unreliable).

I received a call and was at hospital from 7.30amish, clerked, tests all done and ready for the off and 13 hours later of Nil-by-Mouth I was told the liver was unsuitable for me ( at this point I had a barrage of questions) and was told the surgeon didn't want to risk anything so I was left devastated and went on my 2 hour journey home.

At the first sign of unsuitability, the next most suitable donor for that organ gets contacted in ample time so an organ is never ever wasted.

I returned back to life and the thought that I would never get "the call" but 3 days later I was called up, it was the same drill, clerked in and tests completed and wait, but this time I was more relaxed as I knew the drill I was whisked away and was speaking about holidays the next thing I opened my eyes in Intensive care - wow amazing, cannot thank the whole team enough. It was worth the wait and that is what you have to focus on. It's very difficult but try to keep busy with activities that you are able to do, fortunately I was able to do pretty much everything and crammed in everything I could so there was no time for idol thoughts racing through my mind.

"All good things come to those that wait!"

Good luck, your turn will come soon, my love and best thoughts are with you xxx

[Hidden]

So sorry to hear it didn't go ahead fingers crossed for you xxxxxxxx

This may seem a really stupid question but prior to your 'transplants/calls' how 'well or unwell' were you ????? My Robbie 47 - is asleep all day everyday - he gets up for an hour and goes back to sleep - he has Enceph grade 2/3 - is in constant pain - his blood sugars are all over the place - has no appetite and is always cold - he has been on the list since Aug 2013 but he is Blood Group B and needs a whole liver - it makes me wonder when the 'cut off' time is ??? I feel he is too 'unwell' now to get a liver and survive such a major operation !!!!!!! Just wondered how others were xxxx

[pear-shaped]

Thank you for all your kind words, prayers and sharing your experiences... It is a cocktail of emotions, but like you say, they will not transplant if there is any doubt...

my husband does have HE and before being given refaximin was sleeping all day and night... Now we get lots of episodes of almost Tourettes type behaviour, especially in the evenings. If he forgets to take the refaximin, then it goes to a much worse level. Can't tell you how much this site has helped me to pull through...and keep going...

please do not lose hope as a transplant can only be refused if the portal vein is blocked or if there is a certain degree of cancer, but please note, the cancer would have to be above a certain threshold.

[anne-marie50]

I too had 2 false alarms but was lucky on my 3rd time. My fingers & toes are crossed for you & your family. Keep smiling & think positive, I know it's hard but it worked for me regarding my sanity. I wish you & all your family all the very best. Xxxx

[pear-shaped]

By getting the 2nd call up has left him even more stressed than ever... Just being able to talk to people who have and are going through this is a huge support... Thank you

[Tracy0512]

Sorry to hear your news but it will happen soon. The surgeons want to make sure they give you the best possible organ for you. We were lucky and so will you be very soon xx

[Hidden]

Thanks pear shaped - I dint know that xxxx He has been on Rifaximin since last August and now they have added LoLa (L-ornathine L-aspartame) - he hasn't had a 'major' episode yet but has only been 3 weeks - when ever I read other peoples stories I just don't get it ??? I am really pleased that they are not going through what Rob is - but as a RN I cannot get my head around why is he so tired and unable to manage anything himself !!!!!! Perhaps the encephalopathy has gone on to long ??? When someone sleeps deeply for such long periods and cannot even have the energy to get out to the toilet - I obviously worry as I haven't found anyone similar ???? I do try to stay hopeful but all we get told is 'ahhhh Rob needs a whole liver and he is blood group B - that's a tricky one and he has HCV and type 2 diabetes on insulin' - I can't manage his blood sugars - it doesn't matter what he eats - they are always high !!! They want single figures and the best he has had in last 2 weeks was 13.9 ?????? Sorry !!!! I am ranting a bit xxxxxxxxxxxx

[pear-shaped]

I can completely understand your frustration... I guess there are different degrees of HE... My husband has really bad Tourettes type episodes... Having kids with autism adds another dimension as they take all his blabbering literally... Often it turns into really bad verbal abuse... He can talk for about 2 hours often asking the same question again and again... Your husband is very lucky to have you, stay strong and don't lose heart, if its any use, then get a 2nd opinion, it is in your right...

[wadey]

We had a second call this week and after waiting all night were told the disappointing news that the donor liver was not suitable,feel so diappointed and deflated this time but hoping for third time lucky like some of you folks have been on here.

[wadey]

We got a third call on Easter Sunday for a possible liver but again it wasnt as good as what the transplant team hoped for,so we had another disappointment and a long ride home again.I know its great that the team will only transplant the best possible liver but its so hard and deflating when we hear the news that it isnt going ahead.Trying to be positive and wait for the next call!

[dizzime]

Hi there had my transplant last August 2014 it was the third liver offered. Please keep feeling positive it will happen. It is hard work but well worth it. keep smiling keep happy and keep positive If you want a chat about it thats ok

[Hidden]

I really feel for you xxxxxx We had 3 calls in 6 days (9th - 15th April) - it's exhausting - we try to remain positive but it is hard !!!! I say (through gritted teeth and fake smile) 5th time lucky !!!!! Hang in there - there time will come xxxxxxxxxx

[AyrshireK]

Fingers crossed for you all and hopefully the right livers come along for your loved ones very shortly. I know it isn't pleasant to say but with the better weather the potential donors are out on the roads a lot more and although not wishing the worst for anyone the chance of the gift of life has got to be greater at this time of year. I hope your waits arn't too much longer. All the best to you.

Katie xx

[Brummi]

Hi pear, It will happen soon I am sure.