post diagnosis

My  60 year old partner has non-alcoholic cirrhosis and is in a lot of pain from enlarged spleen etc. He also has gallstones which the doctors won't remove because of portal hypertension/bleeding risk. His quality of life is pretty poor, he gets very fatigued and sleeps a lot during the day. Having been  (finally!) diagnosed 6 months ago, he's been left very much to his own devices by GP and consultants who just say vaguely that he may be suitable for a transplant when he gets worse (!) and in the meantime, to just take paracetamol. We are both struggling and I would really appreciate hearing from anyone who might have suggestions, ideas, experience to share. I'm also able to offer  a listening ear and support for anyone who has a partner in similar circumstances.

31 Replies

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  • Very sorry to hear this. I can't believe he's been told to take paracetamol, surely when he was diagnosed he was put on other meds. My partner has cirrhosis, takes about 8 lots of meds & sees his consultant on a regular basis with a view to transplant. He too is very tired all the time & because of Ascites & Oedema is unable to wear anything other than slippers & pj's. You need to go back to your GP & ask what's going on.xx

  • thanks - the GP was initially very helpful but seems to have lost  interest. May be time to try another one in the practice.  he's on lots of meds too but nothing for pain except paracetamols...thanks for responding to me xxx

  • that's what I'm thinking.paracetamols??????

     since when? Does the GP understand how bad that is for the liver?.

  • Is he on beta blockers for his varcies?mhe needs to be, they are extremely dangerous. What is he eating? How much sodium per day? How much protein? He should be eating only whole foods, nothing processed. Is he on any other medications? Do you know of "Tiger Balm? It should be in your shops. It can be rubbed on the liver, it helps so much. Pain meds will make his liver condition worse. I am 64 and there is nothing they can do for me only Pallative care. I need a transplant but do not want one so I have refused going on the list. I can still cycle 20 and 40 miles easily but I also spend a lot of my life now in bed resting. I got liver cancer with my last treatment for Hepatitis C. That was two years ago. But the virus is now undectable. I do the best I can one day at a time but I have almost bled to death 3 times now. I am on no meds but a small bit of Beta Blockers. They do endoscopy once a year to see how my varacies are but thats it other than ultra sound to measure the size of my one encapsulated liver tumor. I refused to let them touch it b/c after talking with the surgeon, he honrstly admitted my chances of bleeding to death in surgery were remarkably high. I wish you so much luck, it would be good if he could enjoy life to some degree. I am happy to help you with what I know about eating with liver disease.

  • Thank you for your reply - I am sorry to hear about all you're going through and I wish you more good days than not-so-good ones. I think joining this forum has been such a step forward for me. It's tough to know about others' situations but already I feel less alone. I hope that soon I can encourage my partner to join... Thank you for your suggestions about diet, beta-blockers and also Tiger Balm - I would never have thought to try that. I'll get some for him tomorrow! He has been told that he could have a bleed anytime but isn't on beta-blockers (back to the GP) and as for eating, I find it hard to cook good stuff he will eat. (I asked him to ask the GP to see the dietitian and she said that wasn't necessary, just to follow a low salt/low fat diet). If you have any suggestions about healthy foods that you eat, I would be really grateful. I appreciate your taking time to respond and also share your experience. I wish you all the best.

  • Just simple foods, baked potatoes, sweet potatoes, organic chicken, beans, salads, nuts, fruits, juiced fruits and vegetables, organic yogurt with live cultures, eggs, whole grain breads, lemons, its not about what we like to eat so much, its about what we have to do to feel better and have some quality of life. My diet is so boring but there are so many starving people in the world that it would be a miracle for them to be able to eat. A lot of this is simply being reasonable. I long to eat like everyone else but I would be so weak and ill if I did, all I have to do is try it for a day to get drastically horrible results. I am shocked he is not on beta blockers. These docs hate being told things so I would say I was told by many others with the same problems of bleeding that they had been put on beta blockers. Is he already on some high blood pressure medication, that might explain not giving him beta blockers. I have to do all my own foot work so its so good of you to do this for him. Ask me anything. I am happy to teply. I hope some of this helps. I would try to keep the sodium low, 700 mg. a day is max for me.good luck, write any time.

  • you have a good attitude: thinking that way about those who have so little to eat. your suggestions are helpful - thanks, it's worth being a bit 'boring' with cooking if it means less pain/discomfort etc. Thanks also for your suggestions re the beta blockers and HBP - I'll check. I'm very grateful for your support, will contact you again no doubt!

  • my platelets are very low so when i go in for varicies banding i take about 3 weeks worth of Nplate and the platelets are then up high enough to have the banding...  i tried platelet transfusion and that didn't work.. neither did the IVIG.... so if he finds a doctor who works with him he COULD get his gallstones removed - i have never heard of pain from an enlarged spleen but everyone is different.  you  need another doctor for him.

  • thanks for your reply, I've never heard of banding, does it help you? he also has low platelets. yes to another doctor! I appreciate your responding here and wish you all the best.

  • banding isolates areas in the esophagus that could rupture and cause internal bleeding and even death... compare it to varicose veins but in your esophagus... i've never had a bleed but have read of instances.. and with low platelets - well you can only imagine.  a good doctor would recommend an endoscopy to go down the esophagus with a scope...  i'm so sad that doctors are so lax!  i'm doing fine (as far as i know) HA

  • that's interesting! thanks for explaining. glad you are doing fine!

  • What are Nplates?

  • nplate is a medicine that is injected and generates platelet production... temporarily... amazingly expensive...

  • wait, paracetamols ? Sorry, but when I got ill with my liver they told me not to take ANY Tylenol or paracetamols.

    Unless he's so ill they don't think it will hurt him anymore? paracetamol is NOT good for the liver..unless there's some new studies out there since my transplant?

    Ibuprofen may not be good either if he has any blood clotting issues.

    But, yeah. And, if he is still in pain, tell your GP that. Normally specialists don't deal with that end, in my experience. The GP's do.

    But no one should have to live with pain.

    I got onto codeine then finally morphine 8 months before transplant.

    But I had massive ascites and tremendous pain. I cried from the pain.

    I also had a huge spleen, twice the normal size, and still do. I probably always will.

    Also, people with liver disease sleep all the time. It's very normal. It can't be helped. The body just stops..lol. Also, our days and nights often get mixed up.

    I'm so sorry your going through this.

    but I would find out about the pain killers. Maybe he does not need a strong one, but he does need one that works, you know?

    It's hard enough being sick to then have pain on top of it.

    Tell the doctor, if you have too, that you have concerns over the prescribing of that medication when it is a KNOWN disaster for livers.

    I mean, think about it..you cant overdose on Ibuprofen, but people have DIED from taking too much paracetamols. The liver cannot process it.

    sorry to sound dramatic, but it kind of is. That medicine would only hurt your partner, make the liver worse.

    cheering you on!

    ps. the only time I was prescribed paracetamol was while in hospital, because I had a fever. That was it.

  • this is really an eye-opener for me - thank you so much for responding, it's so good to hear from you and thank you for being so open and direct. I'm taking what you said on board and think I need to show my partner this forum so we can really get going on getting better care. Cheering you on, too!

  • Glad to help. It's only my experience, but I do know that medicine s NOT for anyone with liver disease. 

    And yes, there's so much wonderful support and knowledge here. Other websites often have wrong info. This one does not, and it offers support, which, for me, was so incredible!

  • I would ask gp for codeine....am not allowed ibuprofen, aspirin, but am allowed to take a half dose of paracetamol..But codeine I get on prescription as you can't buy it OTC without being combined with paracetamol. It works wonders...😊

  • thanks for this, definitely returning to the GP now!

  • definitely...codeine tends to make you sleepy and stops pain...so great idea to take before bed....I get 15 mg dosage

  • Sometimes we have to take pain meds but codiene is bad for the liver. It can even cause liver pain. Still we sometimes have to weigh the lesser of two evils, sometimes this dang disease is too overwhelming and its best to take a mental break from pain using pain meds or sleeping meds. I am ill enough I have to be super careful, taking pain meds can cause my liver to contract and bleed. So can sleeping meds. So I do not go against what works for anyone else but only say, be careful...

  • I am just shocked that the GP needs to be involved in this. I would have thought that the specialist would guide you regarding medications. Paracetamol is a big no no. Towards the end when the liver is getting damaged quite badly they stop all sorts of pain killers. 

    Please try to get hold of another hepatologist! You deserve good care and guidance 

    Good luck 

  • the consultant has been very dismissive and off-hand, and so not really much use, but maybe we just haven't asked the right questions so far...thank you for your post and wishing you all the best.

  • There isn't right or wrong questions as a patient. They are they specialist, we aren't so they should answer our questions regarding whatever it is. You have every right to ask about the things you do not know. I think maybe speak to your consultant and tell him how he's making you feel.

    When I was at the hospital just before a transplant there was one consultant who seemed arrogant. It was like I was wasting his time! One day I asked if there was anyone else I could speak to in a firm way and after that he was happy to answer my questions and that too with a smile. 

    Please do not stay quiet. This is such a hard time for you and you need to know what to do and where you're heading.

  • Hi Pip-Lit

    Your husband is in a fairly similar position to myself (albeit a biopsy doesnt show any cirrohsis, but fatty liver instead).  Varices, portal hypertension (& thrombosis), enlarged spleen and gallstones etc. 

    I cant give you any answers to the exhaustion.  I'm still trying to find the solution myself.  However, I do find that my diet can impact the amount of pain i'm in.   I have a fairly healthy "normal" diet with a bit of everything but I have drastically cut down on the amount of bread I eat, swapping normal bread for unlevened bread like wraps and even those warburton "thins".  This has helped me personally.   I also watch the amount of high fat stuff in my diet and portion sizes.     Havent been able to eat fish & chips from a chippy without paying the price for quite some time!    I went on holiday recently and suffered everyday and the only thing I can put it down to was the food I was eating.  I still get caught out from time to time and whenever I do its really only sleep that gets rid of the ache.    Keep up the drinking water levels to keep everything moving.    General advice really but I hope it helps.

    I am surprised if he isnt on beta-blockers if he has hypertension or varices.   Speak to the hospital consultant.

    I was advised to avoid aspirin and ibuprofen but could take paracetamol if needed.   I generally avoid and try to keep it to one tablet if needed.   

    Its a strange and lonely old place between appointments.  Like you say - left to your own devices between appointments.   You will find lots of advice and support on this group.   :)

     

  • it is indeed a strange and lonely place between appointments - which makes finding this site and so many supportive voices such as yours so welcome! a big thank you for all your points and suggestions - I realise now how important diet is (we had fish and chips recently, first time for ages, and he was very bad afterwards) - and the note about unleavened bread is interesting.  am now determined to sort out the pain relief with another GP! thanks again and wishing you all the best.

  • Hi,I,m 64 female,  I've cirrhosis due to my Diabeties, I have gall stones, but they will not remove them as its too near the liver, I've portal hypertension, they put a stent in liver called (tips) it help with the bleed as I needed surgery for bowel cancer and could not get chemo,my spleen is enlarged and I had an Aneurysom on the artery, they fixed it in January, I sleep more times than awake, told it's because of the liver, and I get pain at the spleen and liver, hold a lot of fluid, I have other problems too, I take dihydrocodine for my pain, doesn't always work, so I take paracetamol now and again as it helps take the edge off,not had any varicasis yet, but have inflamed oesophegus and inflamed polyp in stomach, I was sick with worry as I thought it was cancer, the liver surgeon sees me every 6mths and is great, very helpful,try another doc, at your surgery, I did and got more help. Good luck for the future for yourself and your partner, where do you live, we could maybe talk on the phone, xx

  • I'm sorry you have had such a tough time - I hope things improve a bit. Good luck for everything and thank you for your response. It's great to have this space to share. Thanks also for the offer of phoning - maybe further along the line. All the best.

  • Paracetamol is liver toxic. this medication harms liver. I wonder why the GP has prescribed this medication when your partner has cirrhosis. Please change your GP immediately. Try to consult a hepatologist.  

  • This is one of those points which appears quite regularly & people do get different advice on it.

    Paracetemol at the normal or slightly reduced dosage is actually the safest pain killer to take for the liver ................. yes in over dose quantities it is incredibly dangerous to the liver. 

    My husband who has cirrhosis due to auto-immune liver disease has always been told to take paracetemol for pain relief following procedures (such as monthly endoscopies) and that was by both a gastroenterologist and also the specialists at the liver transplant unit - who also prescribed it to him following biopsies and other procedures as an inpatient at the Scottish Liver Transplant Unit.

  • that's very interesting to know - thanks for this information. whatever happens, it looks as if it's time to discuss this further with the GP. all the best to you both.

  • Thank you all for your comments, I have just joined because I had raised ALT levels due to Methotrexate and have had an ultrasound scan at which I was told I have liver disease now. I have also been this week for a CT scan and now have to wait four weeks to get the results. I have been going out of my mind worrying what the hell is happening or going to be happening to me!

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