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British Liver Trust
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Just thought to let you know...

Hello,

Following our meetings and conversations this week regarding a living donor possibility - we have been told that he would not be considered for one as it is far too higher risk... This has come as quite a shock and also means that we have only the one option now... He has lost more weight and has been getting BP spiking regularly...

I feel as if this would have given him at least another way... They have said that he is the priority now and they are waiting for a heart beating donor...

Blood group A positive are the better group but also the most popular so we are now back to square one.

Pear

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I m sorry to hear that living donating isn't an option. Try and keep positive. Easy to say I know. But you seem so strong although you probably don't feel it . Thoughts are with you both and hope the call comes very soon xx

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Thank you Tracy,

I'm not sure if this is a positive thing, the ruling out of this option? It feels as though I try different avenues only to have doors shut on us... I find myself keeping away from him as his jaundice is so unbearable... By raising the profile in this way I just hope I haven't upset the system as everyone involved in his care is being questioned over him...

Pear

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When Sam was assessed for his transplant . Live donor was ruled out immediately . He had to have a full , heart beating very healthy liver which they said is difficult to find .he was 39 at time of transplant and resembled in his words a Simpson character . Bilirubin was 279 and although apart from itching tiredness and jaundice he was relatively fit so came as a shock that he was that Ill that he had to go to top of list . Raising the profile of your husbands case can only be a good thing . Sam used to get frustrated because he couldn't do normal things without being totally exhausted all the time. I used to automatically just do the things that needed doing . It must be hard for those who are ill to sit back and they feel helpless. he used to get bad tempered with frustration. I didn't take it personally I just told him that when he was fit again he would be waiting on me hand and foot for a few months 😃 his case was straight forward luckily and I can't imagine how it is for you both. I ve rambled enough now. Just know that you aren't alone. Take some time for yourself even if it's just an hour in the park with a good book. I really do hope you get a call soon. What hospital are you under ? Apologises if you have said in previous posts x

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Dear Tracy,

This resonates with what I'm going through so much! Gosh how it feels like you must be the only one going through this! My husbands bilirubin is now around the 400s... So the jaundice, itching and fatigue is so high...

I am grateful for the minus of his HE and keep trying to focus on what he was like before and is now... He said today that he feels as though he had come out of one black hole only to be placed in another...

I have been in the garden and find that I get some time to talk to my plants...

Thank you so much for your care and support.

Pear

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Anytime chick. With bilirubin that high he should be at the top of list now. Anytime you need a chat . Happy to lend an ear xx

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Sorry... We are at the Royal Free

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Hi again Pear, sorry to hear that live transplant isn't a goer for you, I did wonder whether it would be since he needed a full liver first time round & 2nd time has its own set of complications I guess.

I don't think you did anything wrong by raising it at least you showed them you are prepared to do anything and everything to fight for your man (and you know in your heart you would have gone through with it so you'll not spend a lifetime saying if - docs have said no and so that decision has been taken from you) and it will have kept his profile high. He waited two years for that first transplant and you/he/I all suspect he can not wait that long again so he does need to be a priority. To give him the best chance 2nd time round they obviously need that heart beating donation.

Blood group A+ should be able to receive an organ from A+, A-, O+, O- so fingers crossed one of those will be coming his way in the near future.

Keeping you in our thoughts, all the best to you both (all)

Lots of love from Katie & Stephen xx

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Dear Katie & Stephen,

I really didn't know about the blood group! Thank you for sharing this! The living donor option has been mentioned a few times and our transplant consultant was quite annoyed that this option was mentioned at all... She said that this was not an option due to his biliary state... He asked how long he will last before things took a turn for the worst... She said about 2 months... So you are right that 2 years isn't an option.

Lots of love,

Pear

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Hi Pear. Sorry to hear your news but he is a priority now and hopefully at the top of the list. There is always hope. I was on the HDU hooked up to all sort of machines and wasn't really sure what was going on but a liver came along in the nick of time and here I am, me and David. So as I said there is always hope and I an sure the liver required will be along very soon. Loads of positive thought and love and hugs coming your way. Keep strong. X Ruth

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Dear Dizzime,

You truly are inspiring! It must have been so frightening for you... If he gets cholangitis or becomes very sick then they may need to put him on the super urgent list... Hopefully a call will come soon.

Lots of love,

Pear

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Hi pear,

so very sorry you have been knocked back for the live donor route. I completely understand what a blow this is. I have pbc and had been waiting for around 18 months on the list ( blood group B), when we started going down the live donor route ( by we I mean family and friends), even though my blood group not very common there were 3 blood group matches, two were discounted within the first 8 weeks for various reasons but the third ( my twin brother) had every possible test imaginable over a five month period. It got to the stage where sugeons were even looking into actual dates for surgery, when we were told due to the actual anatomy of my twins liver, it was potentially too risky.

This caused so much upset, and the effect rippled through the family. You see my twin could not accept the fact he couldn't help me and it had taken so much out of us all emotionally to even get to the stage of discussing live donor in the first place ( not an easy decision anyway is it), it set us all back. The longer the process kept going the more sure we all were that it would go ahead. I felt doomed, we had put so much hope into the live donor, I was struggling to deal with just going back to the very lonely transplant list ( that's how it felt). I became priority and did get my transplant and although had a very stressful time with acute rejection for a few months after, I am now almost 2 years post transplant and doing very well all things considered.

I don't want to bore you with my stuff, everyone got their own story, I'm just trying to tell you that the tx team will do their best for you without a doubt and that I honestly understand, you are going through something that no one really should and you don't deserve to. Hang in there and keep that positivity that always comes through in your posts. Thinking about you and sending you all the best of wishes, you will get there, it's just such an uphill struggle isn't it.

Please get in touch anytime lots of love xx

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Dear Mclachlang,

It's stories like yours which give me so much hope... Your poor brother! This must have been awful for him and you...

I do believe his team are doing all they can and just hope they get an organ in time. Over time we have become good friends and feel a mutual respect between us... But there are hundreds of patients and sometimes they need to see you are still here!

Pear

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My dearest Pear,

So many inspirational stories & support from those who have been where you stand today. There is always hope & we have to hold on to that.

Cyber hugs & positive energy for you & yours.

X Cibble

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Dear Cibble,

This is the unique beauty of this site... We have many who have past, present and future experiences - which keep us motivated to hang on... The odds seemed to be stacked against us but when you hear stories of such battles and bravery - you feel that hope is something which had disappeared momentarily but reappears when the good people of this site pick you up and give you some positivity boost... They care because this disease has touched them in the same way as it has touched you... It's living proof of human kindness and how there is still such a thing in this world still...

Huge cyber hugs Hun,

Pear

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So sorry that it seems like doors are closing in on you. You have been through so much. The strength you are showing is amazing.

I didnt realise youre at the Royal Free- that is where my stepmum will have her transplant. Its getting harder and harder to keep her spirits up, been 14 months now but fingers crossed!

Your hubby and family are very lucky to have you. Keep strong! X

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Dear SJR,

We were at a local hospital to begin with - then managed to get referred to the Royal Free. The tx team are really supportive and since they have employed more permanent nurses - the ward is also lovely. They all know us really well so it is nice to see the same people. This disease is not good at waiting and often has many underlying deterioration at work - so you cannot miss a thing. We know that an organ has to be available for them to offer it - but we wished that the pace at which he is deteriorating would slow down to accommodate!

There is a forum running on the Royal Free Charity site - it is to support liver patients. I do hope that your step mum gets the call soon - we remember the 1st time round (and most of the people on this site probably do!) it was so gruelling - with the development of his tumours - became a race against time... And now we do it all again...

Again, wishing that your step mum gets her call soon...

Lots of love,

Pear

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Hi Pear, I've been reading your posts with interest. I am also under the care of the Royal Free. I have been on the List for 13 months. My brother generously and immediately offered to be my live donor. He went through 8 months of tests and the date of the op was set. At 10pm the night before we were due into hospital the procedure wall called off due to a blood clotting condition he was found to have. I wouldn't have wanted him to go ahead if there was additional risk but was not happy with the lateness of the decision. It was devastating for me, him and our families; it was so stressful. I fully understand how Mclachlang feels.

I enjoy reading all the comments on this site. I know there are many people worse off than me and I concentrate on that when I'm feeling negative.

I hope your husband gets the call soon and everything works out well for you both.

Love and best wishes,

Christine x

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Dear Christine,

How awful for you and your family! The emotional roller coaster tests all your inner most strength...

Living donor transplants are carried out as almost routine in Europe, Asia and the U.S... The research is quite vague and contradicting though... Here, it seems to be such a cautionary procedure and has very tight guidelines attached... But to go through all of that and then discover this illness must be so difficult...

He is trying to focus on his positives but hits many low points...

Lots and lots of love to you and I will pray that you get the call soon,

Pear

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