First Appointment with transplant consultant

[JCB1]

Evening All.

My husband has his appointment at Salford Royal on Monday. The transplant consultant from Birmingham is coming up to Salford ,and just wondered if anyone has any tips, or suggestions regarding questions etc. We realise this is the first step to a long process and he may may not qualify to get an assessment for a transplant.

He hasn't touched alcohol since April and his main complication is Aceitis, which has leaked out of a wound in a hernia, but at present is being controlled with diuretics. He has had one episode of HE, but is now on medication for this, He is still overweight, but slowly but surely losing weight, which is a battle as when the fluid builds up he can can 20kgs.

His last hospital admission was traumatic as the hernia strangulated, and he is classed as too high risk for an operation, fortunately, it rectified itself, once the aceitis started to leak out naturally.He is also too high risk for a drain as his fluid is in pockets, rather than one big mass.

At this moment he is well, sodium levels are stable, which was another cause for concern when in hospital. He still is classes as decompensated but has moved from a grade C to a B.

Thanks in advance.

[LAJ123]

Hello there,

I went through what you are going through around September last year. I was fortunate and I'm now 8 months post transplant. My liver disease was alcohol related.

I was quite ill with various liver related problems, especially hepatic encephalopathy. From diagnosis via 80 separate nights in hospital, to transplant was just 14 months.

From what you have said, you are doing pretty much everything expected to qualify for a transplant. He has already jumped the biggest hurdle of being alcohol free for long enough to convince anybody that he is serious about that aspect of his life. Also, sounds like he's looking after his general health. They know his real weight as the ascites will be taken into account.

I don't know what steps were taken to stop drinking, but they will definitely want to see evidence or plans for ongoing alcohol counselling. This is a requirement to ensure that the alcohol free life will, if you are listed, continue post transplant.

You must be ready to describe in detail how the hepatic encephalopathy affects your lives and what are the warning signs.

Try to relax as much as possible and just be yourselves.

I hope all goes well and you let us all know how it goes. You'll get a lot of support from here and there is a lot you can learn from the members of this community. Plus of course the many resources available from the British Liver Trust website. If you need to get our friends and relations to understand what you are going through just point them in the direction of the Trust website.

Jim

[LAJ123 in reply to LAJ123]

error - "your" friends - - -

[JCB1 in reply to LAJ123]

Hi Jim.

Thanks for your prompt reply. ...

Great to here of your positive outcome.

Will post an update once we know what the outcome.

Many thanks.

[jojokarak]

Hi hopefully you will get Dr Donaldson, she is a lovely woman and doesn't confuse you with all the medical jargon she explains in lamens terms...

To be completely honest with you I never knew what to ask when they started talking about assessment for transplant, everything is covered by consultant and transplant co-ordinator and also booklet 1 which you get once you get on transplant list...

I don't understand why they won't drain your husband though mine was in pockets and at my worse I was getting drained once a week I was the size of a house, I couldn't breathe or walk, they used ultrasound on me to find best place to drain.

Anyway good luck with the appointment and fingers crossed all goes well with assessment

[JCB1]

Hi. Thanks for your reply..... He has been under Dr Donaldson since May. She is fantastic like you say!

[dckimberly]

Hullo there!

Prior to my transplant..also called Ltx on this forum or tx, I had very bad ascites. I was getting drained every ten days, as when I went every three weeks they would take up to 21 liters of fluid. I looked like I was pregnant with triplets..lol. I had to use a wheelchair when I left the house..walking was painful and difficult. The will also supply an air mattress, like at hospital with moving air pressure should you need one..and a special chair. It's all free to use. Your GP or local nurses can arrange it. My nurse came every week to change my pic line. One day she saw what I needed and called. 2 days later I had the new mattress, it was set up..it's electric and the new chair. They really are so good about that!

Interestingly, my liver counts were all fine, but the ascites told the tale. I would not have lived another year had I not gotten my Ltx. I waitedthe average amount of time..three and a half months. And that was with a rareblood type..A-. So I really was lucky!and I wasn the first 1000 in the U.K. To get the new Hep C medicine treatments. And it worked! So yay!

Alas, my new organ is failing mechanically, I have a rare form of portal hypertension. I did not have a HE prior to transplant, but had ascites again. So I went ahead and got a shunt. Big mistake. The HE isery bad for me..losing a couple of days each week and then there is recovering from it.

I am a paper artist and do a lot of fine small handiwork. That is good for focusing my brain..but my hands do shake..so that is not good!

But, over all, I know my story is not the norm. Many folks on here have been transplanted with outstanding results!

I got back n for an assessed myself Dec. 21stat my hospital..Addenbrookes in. Cambridge. At mine you go in for three days. So I'll go in on wed. And get out the 23rd. Of December..while they retest me for everything. Then on the Friday the team meets and they decide if it's time for a new Ltx. My last one was in Oct. of 2016. So, just over a year.

At your hospital they don't have a transplant ward? At mine they have a liver ward and a transplant ward. I go to all my clinic appointments there also. Where will he have his surgery should they put him on the list?

They are moving Papworths heart tx center there..they are building it now.

I congratulate your hubby on his sobriety..I had 3 1/2 years sober when I got sick. I had Hep C for over 20 years and even though Igor sober. TheHep C continued to damage my liver. I just celebrated 8 years!

Your hubby, like myself is lucky to be alive..most of us die from booze.

Cheering you on!

Kimberly

[Millie09 in reply to dckimberly]

Bless you both . I really hope all works out for you .. As yet my liver is still ok , ALD for nearly 9 yrs .no drain since 2008 . Was in hospital in. 2014 with mild acites due to me drinking after my dads passing . Soironalactone got rid of the fluid .. My last LFT was a week ago , all ok apart from vitamin D ? Very very low . Not sure if that's connected to liver disease but seeing my dr Friday .. Best wishes and good luck ... Linda