New and a little lost

My husband was diagnosed with cirrhosis of the liver and kidney cancer. Since then it's been a whirlwind of appointments, emotions and frustration. The hoapital booked him in to have his kidney removed just before christmas but the night before as they were booking him in to the ward the surgeon read the anaesthetists report and decided it was too risky because he had portal hypertension so he was sent home.

The liver consultant then decided that he may be suitable for a TIPS procedure in a specialist hospital 150 miles away. He's just had the op and that's where we are now. Just wondering if anyone got any experience of this procedure. Reading online the side effects can be horrendous but no info given and questions diverted.

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  • Good morning. What a whirlwind of events! I have portal hypertension & had no idea it could hinder a surgical procedure....... I don'the know about TIPS but there are others on here that do & you will get lots of support. I really hope things are becoming clearer for you & send my Best Wishes x

  • Hi there, sorry you find yourself in this predicament.

    The main thing to be aware of with the TIPSS procedure is that now the blood is being channelled through the liver (rather than slowly filtering it's way through) the blood is not being treated/detoxified and sadly this can lead to a really sudden onset of Hepatic Encephalopathy symptoms. You must make sure they are treating him with both Lactulose and Rifaximin to try and reduce symptoms and some people find a diet with less red meat to be beneficial as red meat leads to higher levels of ammonia in the blood stream which is the main chemical which leads to HE - some folks have reported quite positive results by going onto a vegetarian diet.

    Hopefully it will remedy some of his portal hypertension issues but as you've read it does have its drawbacks.

    Katie

  • Thanks for your advice. I need to contact our local hospital now because up until now all their advice has been is for him to cut down on the drinking until he has had his kidney remived then they will address the alchoholism. Before we left the hospital he was told absolutely no alchohol. I feel that he has been so under prepared for this. There has been no support or program put in place to help him quit.

    We came home yesterday and I could see him struggling because he can't drink.

  • Ask the GP to refer him to an alcohol support programme - they can then prescribe medication to help him. I'm surprised they haven't offered him support for withdrawal but the support programme can do this in the community (needs to be supervised). Once withdrawal is completed (5-7 days) they can prescribe drugs which switch off the "pleasure" receptor in the brain so there is no high from the alcohol. This does help some people apparently. Good luck - you have a lot to handle there....

  • We have an appointment today with the alcohol support nurse so hopefully they will sort something out. Hopefully they will help him to come to terms as well with never drinking again, because at the moment he is under he impression that he can't drink until his next operation to remove his kidney - unless it's his light at the end of the tunnel - mechanism. I suppose it's easier for him to think that he can have a drink again at some point than to know that he can never drink again in his head. I have learned that battling with him about his drinking doesn't work, and after countless arguments when he was first diagnosed, him hiding it around the house, and the lowest point when I was on my way to work and saw him coming out of the local shop at 8am with a carrier bag with 2 bottles of cider in - he saw me coming out of the junction and scuttled down the lane to hide from me - I cried all the way to work that day. We had a long and emotional talk. The outcome was he would be honest and not hide it from me and I wouldn't argue with him, but reason and accept his decision.

    Life is so much calmer now and we are closer than ever, but I cry silent tears most days when I see him struggling with his demons, recovering in his hospital bed last weekend, and the thought of the up coming operation.

  • Oh honey I can so relate to that. We have struck a deal too; no more hiding the bottles and no more nagging; at the end of the day it is their decision. I can only change myself, not him. Like you, I love him so much and it tears me up inside to see him struggling, if you could take their pain away you would, but only they can do that, and only when, or indeed if, they are ever ready. I have reached the point I think where I can't cry any more; to quote the saying it is what it is, and we just have to accept it and move on with our own lives..... or go under ourselves....

  • I've had liver chirrosis for about 8 years, I have portal hypertention and had liver tips done, I was not allowed chemo 4 years ago after Bowel cancer as my liver was not strong enough, I'm not allowed any ops because of the portal hypertention, the tips is put in to help ease the pressure in the liver, just like a stent in the heart, I get so fatigued, want to sleep all the time, swollen on side of liver, I could go on, hope all is well, your husband seems to be well looked after with the docs, all the best x

  • Hi grandkids.great news on your 8 yrs! Mine is 9 yrs with cirrhosis. How are things now with regards to cancer. You have done do well. I have only just had my first hepetologist appointment. My fibroscan was 27 which is very high.so I have further tests on 9 May

  • Hi Millie, just rec,d my letter from Colorectal Bowel cancer nurse, I have beaten the cancer, now all clear, great news for once, still waiting on MRI result to see what's going on with the lesion on my liver, the nodules are behaving, I retire in a few weeks, so tired, chronic pain, I want to try and enjoy what life I have left, hope all goes good for you, x

  • Hey grankids3 👏👏👏oh I am so so happy for you!! That's wonderful news .it's lovely to hear something good once in a while. With regards to your liver just see what happens and get on with your day to day life as really worrying about something that we have no control over just isn't worth out precious time. Oh I can so relate to your tiredness.. I slept through my alarm and only woken up ! How bad is that ...then again I was awake till 5.30 am ..my body seems all over the place these days. I am waiting on my appt on 6 April for neurolpgy then 9 May hepetologist. You take things easy and let me know how things go .you can private message me if you need to chat. Xx

  • Thank you so much, I'm looking forward to my retirement also, I leave work in a few weeks, I'm hopefully going to enjoy slowing my daily routine down, hope your appointments go okay, xx

  • Your very welcome. Oh that's great! Time for you to relax and enjoy life regardless. Hope things all work out ok with the liver nodules. Thank you so do i ! Xx stay in touch 😊

  • Hip-hip hooray! Good news Grandkids3! Were pulling for you. 1 positive step forward hopefully I more giant steps ahead!!!

  • I have portal hypertension yes, Drs. Do not want to do surgery on us due to possible bleed-out! Scary we seem well yet unhealthy for help crazy stuff.

    I don't know about Tips stents for the liver!?? What and when does one need this done! I have had cirrhosis for 18 months curious how long my body will go? I am struggling with weight loss due to sugar count high! It seems one thing leads to another from what Ive been reading and learning. I honestly feel good these days. I give God credit for that! Had another Dr. Apt an internal Dr. had scan of thyroid shows lessions, cysts and many nodules. Waiting to see a Endocarditis specialist for what to do next. Worried, I wont be able to remove due to portal hypertension! I have to get the diet under control, I crave sweets. Try eating fruits instead but little help.

    8 yrs you been living with cirrhosis what year did you start feeling systems? I'm praying for you and rest of us. This is NOT how any of us want our lives to be, but what works for you may help others, keep sharing your journey we appreciate You!

    What was the last drug you took for hep c? Keep living on I am waiting for end of month to see Liver Doctor tell her put me on transplant waiting. Worried whats all involved with that!! ???? Then how ling is a liver wait, since I don't really feel sick...so much to process. What numbers should I be looking at on my Liver besides ast/alt???

  • Corsang.... keep him on the thought that he can drink again one day.

    Helped me no end. The thought of NEVER was unbearable, so just go one day at a time.

    The more days he has without it, the easier it will be to reach the 'never again'

    And all the best, I hope it works out for you both x

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