Jacqui

[Jmears]

Hi everyone, hope you are as well as can be expected. I have just had a report from a Heptologist in Kings. I am getting very confused. I was diagnosed with cirrhosis of the liver 6 years ago and for the last 3 years have been told I need a liver transplant. When I saw the doctor at Kings, not my usual doctor he now says I don't need a transplant. He also said I don't have encephalopathy and ascities which I do have if I don't take diaretics or lactose my symptoms would be worse. I have spider veins all over the top half of my chest which are getting worse. I have a MELD score of 9. I don't know where to go from here. Any suggestions would be welcome. I also have varicies and have had a bleed, portal hypertension.

[gamesmaker]

I read your posting with interest - as I also go to Kings. I was told bluntly a year or two ago that I would not get a liver transplant even though I had cirrhosis at that time. I have never been given details of my MELD score (they tend to keep the same heading on the letter to the GP rather than updating it!)- but I have varices with portal hypertension for my NASH cirrhosis. (two sessions of banding done). The oesophageal varices are now treated at my local hospital as since I lost my husband it is quite difficult to get to Kings, but I stay under their care at Kings for the hepatologists - the out patients is not a problem to get to, but the early start for a procedure and having a responsible adult to take me home is the difficulty - my children are scattered around the globe!. My Fibroscan result was quite high at 27.5. I have some lower leg oedema, but it is not a big problem. I also get nausea, some vomiting, general tiredness and a poor sleep pattern. I have put a marker to follow your posts. Good luck with your assessments -and keep in touch via these pages.

[Jmears in reply to gamesmaker]

Thank you very much for your reply I appreciate it. Sounds like we are both in the same position. And I have the same symptoms as you. I have had banding done 3 time and 1 done under a general as I had a very bad bleed needing a blood transfusion.

[susieanna]

I can only think that you have to be in a worse condition than you both are to qualify for a transplant; I think that if cirrhosis is what they might call 'stable' then its left as it is (apart from the check ups, treatment for symptoms etc).

Its hideous, but perhaps partial positive news in that they think a transplant is now not necessary?.

I would ask myself for fuller details of whats going on in both cases. Are they saying there have been improvements/stability? why were you told you would need a transplant and now not?

And gamesmaker why were you told so 'bluntly' you would not get a transplant?

I would certainly question the specialist fully; you are entitled to answers to understand things more.

Best wishes to you both. x

[Jmears in reply to susieanna]

Thank you for you support. Jacqui

[gamesmaker in reply to susieanna]

Thanks Susieanne. I am pleased to say that I am very grateful that I do not need a transplant at the moment. It was more that the possibility was dismissed out of hand without an explanation. I will certainly bring this up at my next out patient appointment. But thank you so much for your support. These pages are so good on the support side.!

[Jmears in reply to gamesmaker]

That was exactly how I felt it was dismissed and they were so eager to discharge me.

[carmik in reply to susieanna]

Hi

Did you see a consultant at Kings.

Do you know the name?

[Jmears in reply to carmik]

I normally see Dr. Devlin, this time I saw a Dr. Kelsey

[Bolly]

Do you agree with the MELD score of 9? Do you know how to work yours out and if you come to the same score. A score that good means you have a very low risk of mortality at the moment, which is probably why the change of decision re the transplant.

[Jmears in reply to Bolly]

That MELD score was for 2014 November.

[Bolly in reply to Jmears]

Can you work it out for now, i.e is it a much higher number now?

[Jmears in reply to Bolly]

Haven't tried. Must do it before my next appointment in October at my local hospital

[Wendy29]

My mum went through all this at Kings 24 years ago. They kept telling us that she could always have a transplant but she was never put on the list. Seems not a lot has changed in those years. Sadly my mum passed away when she was only 64. It was after her passing I realised I recognised some symptoms myself and shortly after was diagnosed with early PBC - later also diagnosed with AIH crossover. I am now 57 and my medication is steroids, the most annoying symptoms stem from the medication rather than the disease. A friend's husband was refused a liver transplant at Kings two years ago (alcoholic liver disease), even though he had given up all alcohol. He is Irish but lived in UK for years. He moved back to Ireland and had a transplant within 6 months and is doing well.

[AyrshireK]

Hello Jacqui, I take it you are still being kept on the case load at Kings for close monitoring in case the situation deteriorates and the need for transplant re-emerges?

My husband is in a similar position as yourself :- cirrhosis with portal hypertension & varices (1 massive upper GI bleed but 42 bands later his varices are obliterated), his portal hypertension has led to portal hypertensive gastropathy and also aneurysms in his splenic artery (which had to be embolised). His spleen has now died due to the blood supply being cut off so this has reduced his portal hypertension at present.

He was referred to Edinburgh (Scottish Liver Transplant Unit) in June 2013 and was assessed for transplant in June 2014 and spent 10 months waiting on the transplant list with very borderline results. In May of this year he was actually removed from the transplant list since his liver is currently stable - he has no ascites (never has had) but does have very mild HE symptoms. His current med regime is :- Omeprazole, Rifaximin (for HE), Lactulose, Penicillin V (due to non-viable spleen), Prednisolone (for his Auto-Immune Hepatitis/maintenance dose) & Adcal D3 due to bone thinning.

We were attending Royal Infirmary of Edinburgh every 4-6 weeks whilst on transplant list but this has now reverted to every 12 weeks for monitoring. He has 6 monthly ultrasound scans and regular endoscopies (though next of those not till July next year after getting all clear for varices in July this year).

Providing you are still being monitored and your liver is compensated then live life the best you can. As you will no doubt have seen on here of late - there are no guarantees with transplant. It can make you worse, you might not make it at all.

We were 'gutted' when hubby was taken off the list because quite wrongly we'd been seeing it as a golden ticket to life renewed but that is not always the case. It is there as a last resort and sadly due to the shortage of donor organs the selection process will always mean that there can be a long wait. Transplant is a life saving operation and that is it really. They can't give quality of life operations (unless it is due to the intolerable itch that comes with massive bilirubin build up). If it is just that you are exhausted all the time (as my hubby is) then transplant may not cure that at all and may make it worse.

It took us a while to get our heads round it but we have now reconciled ourselves to the fact we have to live life as it presents itself day to day and trust that if the situation was to deteriorate to such an extent that transplant was once again the necessary treatment then we face that as it arises.

Hopefully you are being closely monitored and if the situation does arise that transplant is indicated/necessary to get your assessment and get listed but in the interim do make the most of your better days.

All the best to you, love Katie xx

[Jmears in reply to AyrshireK]

Thank you for your support, I just get so frustrated with the situation, I can no longer work as I get very tired, I have to fight with the NHS to get an appointment in my local hospital. I got to Kings in London every 6 months and supposed to go to my local hospital every 6 months but I haven't seen my loft Heptologist since last November.

[AyrshireK]

My hubby sees his local doctor every 6 months (though this time round it is 9 months between appointments) but local doc is only a gastroenterologist. Transplant unit docs have taken over his care and local doc is only 'kept in the loop' in case of emergency admission to hospital locally.

Hubby too is unable to work through sheer fatigue, even a trip to local shops leaves him requiring bed rest. He worked as a welder in heavy engineering from age 16 - its all he knows and there is no way he could do that now, struggles with concentration, minor tasks cause confusion and he has tremors too.

We managed to get Employment & Support Allowance (Support Group) and also PIP (Enhanced Daily Living and now also Basic Rate Mobility) due to hubby's condition so that has helped us out greatly financially.

I've found that writing and asking about appointments got more results, his local doctor was going to refer to Edinburgh in Jan 2013 and in May we still hadn't heard anything but did start to hear on grapevine that doc himself was off sick so after I wrote a letter a locum at local hospital had him in almost the next day and within a week or two referral to Edinburgh came through and we had first appointment.

You need to be being closely monitored, 6 monthly seems a long gap. I take it you are having your regular ultrasounds and other check ups. If you feel off colour at all you should get bloods taken at your GP and make sure they are sent to your consultant at Kings - LFT's, U's and E's are what we were told to get done if that were the case so they can see if your liver is misbehaving.

Best wishes, Katie xx

[Jmears in reply to AyrshireK]

Thank you. My local consultant is a Heptologist, I have an ultra sound every year, and an endoscopy yearly. I too get ESA Support group, the top end of mobility allowance I also have an insurance through work that pays me 1/2 my wages. So we manage. My husband is retired. Listening to other people's experiences has helped a great deal. Take care. Kind regards,

Jacqui