Pain liver

[H1ghtower]

Am i right in saying that its a myth re end stage cirhosis sufferers to feel pain in liver the worse they get?

The only pain is a caused by intestine movements which you get with lactulose?

[birty]

It's true that the liver itself can't feel pain but the membrane covering the liver does have pain receptors and you feel pain when the liver is touching another organ,I don't know anyone whose had pain with lactolose only when they are constipated hence the need lactolose which only softens stools and is not a laxative .

[ancientadolescent]

I have had a transplant and did not feel any substantial pain before my operation.

[AyrshireK]

Hubby who is awaiting transplant gets very little pain, just the very occasional twinge or niggle.

Never any pain with toileting and never any issue with lactulose so not sure what you mean on that score.

Have you managed to get yourself under medical care yet H1ghtower or are you sadly still muddling along on your own?

Katie

[Hidden]

I had a liver transplant due to chronic Hep B. Throughout the 20+ years of illness, I had no pain in my liver that was significant, nor was there any intestinal pain with or without lactulose. However, there was pain in relation to my gall bladder, which was removed laproscopically, and was "shredded." There was significant pain after that procedure for 1-2 weeks, but was not, according to the doctors, related to my liver.

There is a possibility of pain with enlargement of the spleen.

[H1ghtower]

It was my GP that put it down to bowel movement etc although he was home visiting me at the time so he might of been trying to reasure me it was something and nothing maybe as i do worry a lot. I didn,t feel pain when i was at my worst when i was diagnosed by hospital as child pugh c (end stage cirrhosis) so it might be unrelated. I still havent been back to my specialist or even left the house so i can have a blood test like i should but i feel as though theres no point since i am past the average life expectancy of someone who has stopped drinking (3-5 years IF abstination of alcohol occurs) and unless a miracle occurs theres nothing available to treat or slow down my condition. i,m not looking for sympathy just understanding of my point of view from the people around me. I did bring it all on myself as it where When i was drinking every day.

[Hidden]

if you dont mind me asking how much were you drinking?

[H1ghtower in reply to Hidden]

Eyup fella, i was drinking 15 cans of Budweiser which is 5% every day for about 3 years...prior to then i used to drink, but, i don't think ive ever drunk more than 7 pints in one go and that wasnt every day.

[Hidden in reply to H1ghtower]

thats a alot of beer ! luckily I stopped drinking, generally I was drinking a couple of times a week. My liver appears to be fine, Ultrasound clear, bloods good and a Fibroscan of 4.2kpa. Im never drinking again because of stories like yours, hopefully your liver is in better shape than you think, some live for decades with cirrhosis

[H1ghtower]

Thanks for remembering me katie. Thanks again to every reply which makes a difference. One last question...

If i smoke cannabis as a substitute for alcohol which is pretty much innocous as far as liver at least (i think) on a daily basis would that affect my chances of getting on the transplant list? I,ve been free of alcohol for almost 5 years now.

[Hidden in reply to H1ghtower]

as far as im aware smoking just cigs means your off the list and definitively cannabis

[H1ghtower in reply to Hidden]

Are u sure, Ralph...if thats true why wasn,t it mentioned to me like the alcohol rules at the hospital...if i stopped drinking and went back 6 months later as a smoker just to be told they need another 6 months of being smoke free this time id assume they where joking, and, if not joking whats to stop them springing something else on me 6 months after that? I was reminded probably every day at least once by nurses and consultants alike for 6 weeks at the LGI in Leeds but the only time cigs where brought up was when i insisted on going outside for a cig break against the advice of my consultant as it increased my infection risk. I refused every time and got an infection in the end believe it or not which extended my hospital stay by an extra week, lol. they never advised me to stop smoking completely though. I remember They went on about me drinking diet cola a lot instead of water till i agreed.

[H1ghtower]

Thanks ralph. Has anyone else been told they shouldn,t smoke RE getting on this transplant list? It makes sense to give priority to healthier patients that wont be likely to go back on the drink etc the first chance they get after a liver transplant. Also, are live donors allowed a say on the recipients in some countries? I think it would be a nogo via nhs but elsewhere i wouldnt be surprised?

[Hidden]

live donors are usually family members and yes they have a big say, I dont think people volunteer for strangers. I have heard smoking is a big no no, people have been booted off the transplant lists for cannabis on the US forums, i not sure if its considered less serious for just cigs, but the transplant doctors want to see someone care about their health and smoking cannabis and cigs doesnt really give them much confidence i suppose, they may think you would go back to drinking too if your a drug user.

[AyrshireK]

Hi again H1ghtower, as regards getting on the list for transplant you have to undergo a very thorough assessment including a test of your lungs, lung capacity and lungs under stress - this is all about how your body would cope with being intubated, on oxygen for 12 plus hours during the operation and perhaps even days afterwards. If your smoking has affected your lungs that would affect chances of listing since it would make the risk too great.

I don't think they'd be too fond of the cannabis use (drug use is mentioned on some of the listing criteria i've seen), you'd undergo a psychiatric and social assessment during the assessment period too as you'd need to be mentally able to undergo the operation and recovery. For drinkers they have to be assessed and continuously monitored for sobriety and the TP centre would demand a signed pledge of sobriety post transplant.

As regards live transplant, you have to be listed on the NHS liver transplant list it isn't a way of jumping the list and the donor wouldn't be a stranger since only close relatives or family are considered. I don't know how this works in other countries.

Wishing you all the best, Katie

[H1ghtower]

Thanks, Katie. I was wondering if i could skip certain protocols like the lungs etc but at least i wont have to ask family now which i,d been dreading ever since i was first diagnosed...it must be really embarassing for a family member to refuse such a request and i,d prob feel like right c@&£ And most likely change my mind if they said yes anyway!

[AyrshireK in reply to H1ghtower]

The assessment is very thorough, on my list of threads you'd see what my hubby went through during his assessment in June of last year. It was all about seeing if transplant was needed, if the time was appropriate for listing, if there were any other health issues which would prove a bar to transplant (such as cancers elsewhere in body or serious heart or lung issues) anything which would make the risk of putting a patient through the transplant operation too great, it would also have identified any contraindications to transplant such as ongoing drug (intravenous) or alcohol use/misuse and assesses social/domestic circumstances and support network needs.

The Scottish Liver Transplant Units website is very thorough - i'd imagine the other units are too. But the SLTU one does have links to the medical criteria, contraindications and medical protocols as well as the basic information for patients. It also has the details regarding the live donor programme. nhslothian.scot.nhs.uk/Serv...

I know you have all sorts of anxiety issues which have previously caused you issues with the health service but the only way onto the list remains a referral to and assessment at one of the countries transplant centres and you have to jump through every hoop set, all appointments need to be attended, medication taken as stipulated etc. etc. There are too few donor organs and they can not afford to waste them on those who will not look after themselves properly either pre or post op.

As you know my hubby is still waiting for a transplant, he's been listed since July 3rd 2014 (cirrhosis due to auto-immune hepatitis) & we are just grateful that his health is holding up so far and he perhaps has the luxury of a bit of waiting time in his body i.e. we are not at emergency stage yet. If you are hoping to be listed you'll need to do something about getting yourself referred for assessment, with already diagnosed end stage cirrhosis you may not have the luxury of time sadly.

Take care of yourself. Katie

[H1ghtower in reply to AyrshireK]

Ive just read what you posted and auto immune hepatitus might have different risks post transplant than alcoholic cirrhosis maybe?

I only bring it up as it might put patients on this site off even applying as the prospect of going on the wagon is daunting to say the least and further obstacles coming up maybe just the excuse they need to carry on drinking.

Sorry if that seems patronizing and its just my humble opinion so i could be wrong.

h1ghtower

[AyrshireK in reply to H1ghtower]

Simply put H1ghtower, alcoholics who continue to drink don't get listed for transplant.

They get tested whilst they are waiting and get removed from the list straightaway. Ongoing alcohol use is one of the out and out contraindications to transplant as I said there are too few donor organs for all those waiting and the NHS will not waste a valuable organ gifted by someone who has perhaps died in the most tragic of circumstance to someone who is then going to repeat the cycle of abusing the new liver when there are others waiting who through no fault of their own have suffered liver damage or those who have taken the necessary steps to rectify their lifestyle choices i.e. drinkers who have stopped and complied with the criteria.

I have only tried to be supportive in the information i've shared and it is only the truth of the matter, the SLTU site I linked too has the details of when and when not to list and it is all there in black and white.

However as you correctly say there are potential post transplant complications with the auto-immune conditions and alcoholic cirrhosis is actually the only one which can be totally 'cured' by transplant all the other auto-immune conditions, viral conditions and such like can all come back post transplant but if a patient stays off the booze and they get a new liver and provided it is looked after and isn't abused then it should last a life time. If it is unlikely that a potential recipient isn't able to abide by the protocols and criteria for listing they sadly won't be.

[H1ghtower in reply to AyrshireK]

I know, sweetheart. Like i mentioned i don,t mean to be condascending...sometimes it,s a chore in itself to be non- patronizing due to GP,s knowing so little on the subject (ive had to school him in the past) . I've been forgeting which forum i,m actually posting on as well lately...i get emails from developers sometimes asking how they can help so i must of asked for support for an ipad app previously but unless ive written a review i just have to wing it and try to not look stupid as much as poss.

Cheers Ralph and katie

[Hidden in reply to H1ghtower]

The problem is alcohol can damage other organs aswel, these will need to be tested to be sure the patient can handle such a major operation.

As far as alcoholics being "daunted" by being told the truth, im sorry but thats the way it is, death is more daunting. You do as the transplant team says or you don't get through the door, sorry for being harsh but that's the way it is. The operation is expensive and requires alot of skill that shouldn't be wasted on someone who is going to be cracking open some beer as soon as they can

But alcohol damage is one the easiest to stop, you just stop drinking and a new liver should be fine.

I personally feel very stupid and humble when there are people like Katie and her husband who have lived a clean life and get something like this. Even a transplant isnt the end of it, as Katie says the condition can come back and infact kill the new liver even quicker than the first time.

[H1ghtower]

It always has a humbling effect on me when i come on this site and read the stories about people who are clean living and dont deserve the illness like myself (alcohol induced cirrhosis) if i had gone to hospital when advised i might of gotten away with just a fatty liver which can be cured as it where. Don,t think i,m gonna even apply for a transplant unless i can assure myself at least that i wont start drinking or taking class b drugs again.