My mum, advice greatly needed - British Liver Trust

British Liver Trust

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My mum, advice greatly needed

1Shaky
1Shaky

I live in uk, my mum was diagnosed about 6 months ago with cirrhosis of the liver( non alcohol) she has had a couple of stays in hospital due to the toxins building up in her brain, after the last stay they told her it is now at a critical stage. In the few weeks since she’s put on approx 3 stone weight in water and continues to swell, she’s on a high dose of water tablet. She seen specialist today who’s sending her in on Friday to have it drained off, they are now worried about the tablets effecting her kidneys, saying if they did she would only have 3 months!! The tablets don’t seem to be working so is it not possible to come off the water tablets and have a drain put in so she could drain off the water herself, saving her kidneys in the process? Also she’s 72, why can’t she go on the transplant list? and my mum was told I was to old at 47 to be a live donor, is this true?

We as a family feel that they have given up on my mum already, and feel that time is running out.

Any ideas advice would be appreciated.

28 Replies
oldestnewest

I'm not an expert but I do have cirrhosis. Personally I think I'd ask for a second opinion. Be polite but forceful when you speak to her specialist and ask why is she too old for a transplant?

Firstly, I am sorry to hear that your mum is so unwell,but your support will be helping her immensely. I will try to answer some of your questions, but I'm sure others will be able to fill in the blanks.

Being listed is based on strict criteria and the patient must have a good outcome. When being considered, there must be a good chance for the person to survive beyond a certain time frame and since it is such a major operation, there will need to be a lot of health concerns taken into consideration, e.g. heart and lungs functioning well, reaction to anaesthetic amongst other things.

As far as being a liver donor is concerned, a thread on this forum discussed the fact that when some people enquired, they were actively discouraged from doing so. The risks to you as a donor are huge and you might not even be a match. There are many issues that would have to be discussed.

The fact that your mum is not responding to the water tablets is probably complicating things at the moment, but I don't know the answer to your question about draining I'm afraid.

Whilst your mum is in hospital, make sure you ask the doctors as many questions as you can, otherwise you may wait a while for an appointment.

I'm sorry if this all sounds a bit negative, it's not meant to be, just letting you know what would need to be considered before listing and being a donor.

I hope your mum responds well to the draining and that her kidneys are unaffected. Maybe once they have dealt with the fluid (ascites), they will be able to give you better news.

Wishing you both all the best:)

1Shaky
1Shaky in reply to CarpeDiem11

Thanku,, msg showing up now,,

I’m going in tomorrow with my mum, will try and find out what I can,, am getting some fantastic feed back. Thanku for your help🤗

CarpeDiem11
CarpeDiem11 in reply to 1Shaky

You are very welcome. Good luck for tomorrow:)

Sorry to hear of your problem, the reason I was told that you cannot self drain if it were possible is they whilst draining have to replace the lost albumin lost with the excess water, I got to the point where I was being drained every two weeks, it was not nice as in the UK they use a Pigtail and it takes some pushing to get in, We moved to France and found things totally different, if you like a lot less barbarrick, the Specialist I was under just used the biggest needle they had pushed I lept off the bed but it was in, all I had to do then was lie still and deflate, but as said I was put on an albumin drip. Unfortunately the cut off age for transplant in France is 63 not the news you would ever like to hear, I do not know the age limit in the UK, again as what has been said you need to be firm with the specialists.

1Shaky
1Shaky in reply to Jumbot

Hi sorry I did reply before but messed up so it didn’t show.

Thankyou for sharing your experience I’ve received more help, advice, ideas in the last day than what I’ve tried to find out in the last 6 months!!🤗

May I ask how your health is now,, from having to be drained every two weeks, how did they sort it out? Did you continue to take the water tablets?

Jumbot
Jumbot in reply to 1Shaky

I think of myself as fortunate as the NHS gave up on me, (See my introduction post) we moved to France, I existed for a year on the meds I had from the UK but we were forced to see a French Doctor, I was fortunate as she knew the Liver specialist and I got a same day appointment, so we drove to St Laurent du Var where he was based, Fantastic Chap, he ended up requesting a full MRI to see what was going on, we asked when his reply was now they are waiting for you, that was our introduction into the French Health service, if it was not the same day it would be the next. That done we were astonished to be told the results there and then, in the six years I was in France I never mastered the language, fortunately my wife who I will be for ever grateful to spoke fluent French, we were told I was to be admitted, the water drained and another MRI in the morning as the water was affecting the reading, I was dreading the Pigtail being inserted, but as I mentioned the specialist used a large needle, taped it in place told me not to move he would be back when I had deflated, the nurse connected me up to various bottles of Albumen to replace the Albumen lost when being drained and I waited, this was to be a common occurrence every two weeks until my transplant in 2014, after the transplant I had to have a further 4 drains, the reason they have no idea. I still take Spironolactone 50mg and Furosemide 40mg I am soon to come off the Spironolactone, my health is not good I have Lymphedema in the Left arm and legs, still get tired and have muscle loss, I have just been diagnosed with Bowen's disease small spots on my left arm that if left will turn into skin cancer, I was told it would possibly happen due to the drugs used to shut down my immune system in case of rejection, I have a cream that seems to be removing them, I look at life this way, sue to some one else's misfortune I am alive, therefor what ever hits me I am going to cope, I am alive and can still annoy people, what else do I want? Although the DHSS nearly saw me off when I asked for help, over 10 months to get an answer, they truly are bad. NEVER EVER GIVE UP, your Mum deserves the best and by the sounds she has you, so she is half way there, do not give up, keep pestering people, I wish you and your mother well.

1Shaky
1Shaky in reply to Jumbot

Thanku once again for sharing, quite emotional reading your story. You have given me a lot of info, I won’t give up on my mum, I’m like a dog with a bone. I wish you all the best x

Jumbot
Jumbot in reply to 1Shaky

Thank you, there will be ups and downs, tears of happiness and sorrow, but you have the will to fight for your mum, just make sure she keeps drinking, many people tend to lessen their intake when the truth is you need water. ok so the Liver dumps it in your abdomen but keep some intake going

Hi I have thanked and msg the above people who responded to my post but can’t see my msgs have they not gone through sorry I’m new to this 🤔

CarpeDiem11
CarpeDiem11 in reply to 1Shaky

If you clicked on the reply word underneath the person's post you want to reply to, then wrote your post, then pressed the big blue square reply, then it should appear. Sometimes there is a little time delay. Hope that helps :)

1Shaky
1Shaky in reply to CarpeDiem11

Ok let’s try to see if this shows up?

Hi I’m so sorry you’re Mum and family are having to deal with this.

I lost my dad 2 years ago his kidneys gave up in the end due to the water tablets. He was being drained weekly the tablets were having no effect so they had to stop them. It was hell but from going through it I would have done things differently if I knew what I know now.

First Ascites kills you need to get a handle on it ASAP please please please if you can get seen at the Royal Free hospital in London they are amazing. If your mum is eligible they may be able to offer her the Alpha pump it’s a machine fitted under the skin that directs the fluid in to the bladder so you pee it out. My dad was excepted for it but died before his place on the list. My biggest regret is not getting him under the Royal Free from the start I kept asking and they kept saying “he’s not sick enough yet” I should have put my foot down as you have the right to be seen in any hospital you want. He was also to sick by then to undergo a transplant because his other organs were put under strain he wasn’t deemed fit enough another thing I kick myself for not getting him there soon enough.

If you have any questions feel free to message me best of luck x

1Shaky
1Shaky in reply to twice-over

Thanku for replying, I’m so sorry about your dad.💕

Please may I ask how would I go about getting my mum seen at the the hospital you mentioned above would it be through the specialist?

They’ve said no to a transplant but seem to be more worried about her kidneys now due to the high dose of water tablets she’s on, I can’t get my head around why then keep her on them if they are no longer working, the pump idea sounds the sort of thing I was thinking of just to get her off the tablets,

twice-over
twice-over in reply to 1Shaky

Hey that’s exactly what happened with dad but they stopped the pills.

If your mum is under one consultant don’t Walt until her next appointment call their receptionist and say you need to speak to her consultant asap and ask for the consultant to call you back. Tell him you really want her to be seen at the Royal Free Hepatology department and you want him to make a referral and don’t take no for an answer you are well within your rights to a second opinion. Once she’s there the treatment is the best and they offer trails if she suitable. DR Moore is incredible x

1Shaky
1Shaky in reply to twice-over

Hi,, well it seems the specialist that my mum has been seeing is a gastroenterologist and we were wondering if this was right, would she not be better off seeing a heptologist? Now after your comment it seems so!

Is it normal for a gastro specialist to treat a patient from beginning to end? He must know at this point mum may benefit more from seeing a heptologist surely.

twice-over
twice-over in reply to 1Shaky

A lot of hospitals don’t have a Hepatology department they will be under the Gastroenterological department who do have knowledge for liver/cirrhosis but the Royal Free if you’re in London is leading the way in Hepatology we are entitled to the best x

Does the hospital your mum is with do liver transplants ? In my experience they will offer advice but will send you to a specialist hospital to be assessed for a final decision. Even more reason to be referred.

1Shaky
1Shaky in reply to twice-over

No her hospital is Torbay in Devon, like you said we would have to travel,, but that’s not a problem. There’s been no mention of going anywhere else to be assessed, it’s like what he says is final, so looks like we may have abit of a fight ahead in order to get to see anyone else,

twice-over
twice-over in reply to 1Shaky

I’m sure you’ll do your best that’s all you can do. Let us know how you get on and if you need anything even just to vent drop me a message 💕

1Shaky
1Shaky in reply to twice-over

Thanku I really do appreciate all your help and advice and I’m sure I will be dropping in in the coming days, big hug 🤗 x

Jumbot
Jumbot in reply to twice-over

Hello if I may leave this link here, it is very new to me as when I asked in France has anyone come up with this type of thing I was told not yet, thank god for inventors!!

alfapump.com/alfapump/

I just recently had a transplant assessment, they gave me a leaflet about living donors. The age cut off is 55, so you are no where near that!! You'd have to be the same blood group, and as others have said there are risks. Also some people may not be able to donate/receive this type of graft due to anatomy of vessels etc.

I'm not sure there is a definate age cut off for transplant. However they have to decide how much benefit in terms of quality of life, and life years gained. As there is such a shortage of organs, they have to use them carefully. The assessment looks at your overall health, and your ability to cope with the operation, and post transplant drug regime.

I agree your mum should defiantly be seen by a hepatologist. Any of the transplant specialist units would be good. The British liver Trust has a list on their website. You do have the right to be referred, I'm surprised your local hospital hasn't automatically done this, as your mum's condition sounds advanced. Have they identified the cause? This will make a difference in terms of prognosis. Some liver conditions have successfully treatments that can help the liver recover enough to carry out its basic functions.

I really hope you get some answers and your mum's health improves. She's lucky to have you fighting her corner.

Best wishes

X

1Shaky
1Shaky in reply to Wass71

Well Thanku that’s interesting,, so why on earth did they say I’m too old and shut my mum down! I know we have to be compatible ect and there’s so much more to it.

I’m not sure of all the medical terms but when mum ended up in hospital last time about 4 weeks ago they told her that it really took its toll on her and now it’s at a critical level so go away and enjoy the good days, since then she’s put on about 4 stone in weight due to water build up which she’s having drained off tomorrow. She saw the specialist Wednesday this week but came out feeling really low as she was shut down on transplant list or living donor, basically nothing can be done.

CarpeDiem11
CarpeDiem11 in reply to 1Shaky

Psychologically as well as physically, this is a very hard process to go through. Not wishing to be the voice of doom, but what if you donated and she didn't survive and then you were very ill? What if she did well and you were very sick afterwards? These questions and I'm sure many more would be questions an assessment team would ask. This might be why your mum was closed down as you say. If you read about living donors, 50 is the usual cut off age, but they might consider older people if they were in very good physical health. So no fatty liver, no heart problems etc etc

When you speak to a specialist, you need to take someone with you that can make notes, while you focus on asking the questions. There could be a lot of medical problems that have not been spelled out yet and they should explain those to you. When I was not getting answers from my gastro, I got my GP to do the referral to a specialist hepatologist and he was happy to do it, so that is another route you could take.

Unless you ask questions, they are unlikely to volunteer information, so write all your questions down as you think of them, as I've found they will answer questions, but generally don't add anything that you haven't asked.

All the very best for tomorrow:)

1Shaky
1Shaky in reply to CarpeDiem11

Thanku that makes a lot of sense,, Ive looked into being a donor and yes of course it’s a massive decision and the out come could be far from what we wish for, she’s going to die anyway if we don’t do anything.😞

Like you said we deffo need to be at further appointments to ask questions, take notes, it’s too much for mum and dad to cope with on their own, there’s to much to take in let alone ask questions, I’m going ahead with what u and others have said ask to be referred to a heptologist. Thanku 🤗

Hi 1Shaky,

It seems you have received some excellent advice here from those more familiar with the UK.

Wishing you and your Mother the very best,

Mary

1Shaky
1Shaky in reply to mncold

I can’t thank everyone enough 🥰

So much information, ideas and advice from people who have lived it and speak from first hand experience. Some emotional reading too, it’s tough.

Thanku for your msg x

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