Should I ask for more tests or being assessed for a transplant?

[taar]

I am a woman, not yet 62. Though diagnosed about 7y ago, when I was told I probably have a liver transplant in my future, I have always been pretty much asymptomatic. I now have NASH cirrohosis, end stage-- had a variceal bleed over the new year, they did an endoscopy, found three varices, but because none was actually bleeding at the time they didn't band any. I was told I have a 60-80% chance of surviving the next 5 years. I am due to have an ultrasound, possibly a Fibroscan, and another endoscopy and see my specialist again soon. Should I ask about liver transplant assessment? I haven't yet been referred to a specialist centre, I believe my local one would be QE2 Birmingham? Are there any other tests I should push for-- ARFI ? ELF? Any other advice gratefully received.

[AyrshireK]

As you are still in the compensated bracket of cirrhosis you probably wouldn't be considered poorly enough for transplant. You could perhaps ask for referral to QEB - we went to Edinburgh a year before a consultant there decided to put him forward for transplant assessment. They said they'd rather see people too early rather than too late. I personally wouldn't think you'd get a t/p assessment yet but it wouldn't hurt to have an appointment at QEB to check all is being done that needs done. The other tests are not going to add much to your diagnosis as you already know you have cirrhosis.

Can't hurt to ask for the appointment. I hope you are being regularly monitored (6 monthly scans, bloods etc.).

My hubby is 7 years on from diagnosis - he still sees a local consultant plus one in Edinburgh who keeps an overall eye on his condition. 6 monthly scans & bloods. He was listed in 2014 but delisted due to his stability and lack of obvious liver symptoms.

Katie

[Popel]

Hey there.regarding myself my first bleed was six years ago in which I was banded and appointed a gastro consultant who has been amazing doctor.so fast forward 4 years and a bleed in may were I was banded and found out I’d had a thrombosis in the portal vein which compounded my hypertension and cirrosis it was then my consultant referred me to QE Birmingham and she told me I might be deemed to healthy to get listed so the following months being assessed I’d had another bleed less than six months after the second bleed in between the two assessments. But what convinced the assessment team with me was the part blockage I had. so from them listing me took roughly four months for a suitable liver for me which I had on the 22nd of February this year.i think you should at least ask when your next appointment is.as there is no harm in asking but there’s no handbook for them about who gets listed as every case is different and at different stages of liver disease.i wish you well all the same.take care.paul

[Popel in reply to Popel]

Hi Katie.it hard when your first made aware that you have cirrosis as you know all to well with your husband.because you automatically think the worst

and what the usual outcome of having this terrible disease is.its a natural instinct to fret about how your going to get through this and wonder how your going to cure yourself rather than have a TP.and I’m pleased that your husband seems to be doing so well.and it also depends on your symptoms that changes your thinking we’re your thoughts turn to having a TP cause even though you can change your lifestyle like I did and stopping drinking years before.it was too little too late for me. But doesn’t mean it is for lots of people and in my case I’d of rather of managed cirrosis than had an aggressive Transplant.all the best.paul

[taar in reply to Popel]

Thanks for your reply- hearing from others is such a good source of information and helps me to figure out what is going on and what is likely to happen next.

[Isabelle2]

Hello Taar

I live in France and had a transplant 2 yrs ago. I don’t know how things work in the U.K. but why not ask?