My wife has a Bilirubin of 43 which ha... - British Liver Trust

British Liver Trust

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My wife has a Bilirubin of 43 which has increased from 16 in February.

Ron111 profile image
9 Replies

My wife is suffering from none alcoholic cirrhosis (PSC). Her consultant is carrying out all the right procedures to determine the level of scaring/damage to her liver (Blood tests, CT scan, MRI etc.,).

These tests are carried out 6 monthly, and my wife, who is 75, has been advised that she would not be put forward for a liver transplant if her liver condition gets worse.

Is this something we should accept? is there something we can do to get a second opinion?

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Ron111
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9 Replies
Kji378 profile image
Kji378

Hi Ron111 🙂

I'm sorry to read your post.

I haven't been on the BLT forum for a while and I'm not sure about PBC as I was a drinker.

You have a very difficult and sad situation. I think you probably know the reason why your wife may not be able for a TP, but it wouldn't hurt to ask for a second opinion.

Actually you know what? Definitely ask for a second opinion, who knows? If you don't ask, you don't know 🤷.

I hope your wife does NOT get worse, I hope she stays as healthy as possible and then they may consider a TP.

I'm trying to avoid mentioning her age, as A LOT of 75 year old women are amazing, despite having medical issues. From what I understand, a certain age is a marker for non TP.

BUT...STAY POSITIVE! Try to keep her sense of humour going, music, sing out of tune on purpose, to make yourselves laugh.

I wish you the best, STAY STRONG!

Look after YOU too.

Take good care 🙂

Ron111 profile image
Ron111 in reply to Kji378

Thank you for your kind response. I am not aware of the scoring method for TP, although I am seeing something called the UKELD Score. it would help if we could understand how this is derived. Any information would be gratefully received. Kind regards, Ron

Kji378 profile image
Kji378 in reply to Ron111

Good Morning Ron 🙂

UKELD is a number derived or worked out - by certain blood levels, which include Sodium, Creatine, Bilirubin and also the INR level, which predicts mortality in end-stage liver disease patients for transplant plan. HOWEVER, stay positive!

• I feel the best thing to do is to contact your Consultant or Hepatologist direct, ask for an urgent phonecall, to establish what and why they are telling you this, also re your wife's UKELD Score and ask them to explain it to you.

**I think they owe you this much.**

• Any good Consultant will give you facts and figures, answer your questions as well, as honestly as they can, because who knows what is round the corner?

Your wife, may deteriorate, your wife, may BOUNCE BACK~ it has been known. I know people (including my myself), that have been VERY ill, at deaths door, YET...somehow, without TP, started to function well enough to enjoy life again. 🤗

I sincerely hope this is the case for your wife, so that she can enjoy some kind of comfort, with her disease.

I would act on this now rather than tomorrow or next week. As the medical professionals are so, so crazy busy, as we know.

You will then have the information from the horses mouth.

You need facts and figures.

Ring today! *Also ring the BLT helpline. They are ☆ BRILLIANT☆ and can advise or just to talk things through with you - I think that's a good idea to do anyway. Their number is 08006527330 and are there 10am - 3pm or 3.30pm Mon to Friday, so please call them too.

Please tell us how you get on, don't accept, or give up, stay on that phone - while the 'on hold' music drives you mad, until you have some kind of appointment in whatever form - i.e a return call or face to face.

Just know there are a LOT of kind, caring people on here with very similar situations. That will be here for you and your wife to support in anyway we can.

I hope you get some answers SOON.

I also hope you get some more feedback from members.

Again, STAY STRONG!

Take Good Care, send your wife my love, tell her she is a wonder woman and she is not alone. 🥰

Good luck Ron 👍

Give it welly today.

That's an order from a bossy mare 😁

I'm trying to end this HUGE post lightly & send a hug 🤗

Louby1954 profile image
Louby1954

I do not drink or smoke at all& have just had biopsy

On the cards I have heart surgery

I pray that you both continue on your journey alcohol free & the a transplant is not needed 🙏

Louby1954 profile image
Louby1954 in reply to Louby1954

I. I wondered this as I am the same as you & waiting biopsy results now. Definitely heart operation on the cards for meGood luck & please up date me xx

AyrshireK profile image
AyrshireK

Hi Ron, there is 'technically' no age cut off for transplant but advancing age is seen as a 'relative contraindicaton' just because older age does tend to bring with it other health issues that may mean a poorer outcome during and after such serious surgery - heart, lung health etc. Though decisions should be made on a case by case basis by a multi disciplinary team at a transplant unit. Not by a single consultant - unless of course other health issues which would debar transplant are already evident.Not everyone with cirrhosis needs a transplant. My hubby has now had a diagnosis of auto immune cirrhosis for 10 years and his consultant has patients who have stable cirrhosis for 20+ years on his books.

The key is to keep fit and healthy as possible, eat well and live a good life.

Katie

Kji378 profile image
Kji378 in reply to AyrshireK

Thank you Katie. I'm not great with certain facts & figures re age.

Your knowledge is far vast than mine, thank you for filling in gaps.

Hope all ok up in the land of Katie 🙂

Lam1e profile image
Lam1e

Hi Ron

When I had my transplant assessment at King’s in 2019, there was a 77 year old lady being assessed. She had a transplant and I saw her at a man outpatient clinic last year.

I would ask that she has the full transplant assessment 💜🙏

kingsnorth profile image
kingsnorth

HI Ron111 l have PBC non alcoholic liver disease I’m 72 this year my meds are keeping me stable thankfully my consultant told me that even with cirrhosis you can live a relatively long life hopefully your wife won’t need a transplant. I live in the UK and my PBC was diagnosed by way of biopsy. Best wishes to you both

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