Budd-Chiari syndrome, copying with Liver Disease

[SharonB9]

Hi,

My husband spent 6 weeks in hospital due to Liver disease and cirrhosis, it was unknown what condition he had. So he was transferred to Leeds St James Hospital and they found he had Budd-Chiari Syndrome. A disorder affecting the liver and blood vessels, where blood flowing into the liver has difficultly in being able to flow out, leading to serious complications.

Whilst he was in Leeds he had a TIPS procedure, and has said he feels slightly better than he did before the procedure. However I think he feels that once he had the procedure that would solve all his problems.

He's been out of hospital for a few days now and I think he's struggling to cope with his condition. Appointments have been flying through the letter box for a endoscopy, to go back to Leeds at beginning of April, scans etc. He's been getting upset saying he's not going to the endoscopy. Which I've told he needs to go cos the last time he was vomiting blood and four varies had burst. Think he's only just getting his head round the fact that he has to go warfin clinic each week to be monitored on warfin. I've tried telling him that once he's on a even level and everything is stable he wont have to go to as many appointments probably every 6 months or so, I don't know myself because it all depends how well his liver can function.

The doctors have said that he'll be able to get his life back but it will take time and patience to get better.

He's got acities at the moment and keeps getting bigger everyday so think he may need another drain and then hopefully that may make him feel better.

All I'm asking is has anyone else been diagnosed with this Syndrome? or something similar?

How do you cope with Liver disease or if your supporting someone how do you help them keep positive about things? Sorry, all new to this and its distressing and upsetting seeing him like this. I'm trying my best to support him, I cant keep saying to him I know how your feeling, because lets be honest I don't. I don't know what pain he can feel, I don't how uncomfortable he is.

[jojokarak]

Hi sharon am sorry to hear about your husbands diagnosis. We all who are diagnosed with liver disease have completely different ways of coping and it does sound like he is burying his head in the sand. You need to talk to your gp, or someone at Leeds and explain the situation so someone in a professional capacity can explain why it's so important your husband gets treated and helps himself. I am sorry I don't know much about the condition he been diagnosed with so I can't help with that. But it does sound like the doctors have give him a good prognosis once they get everything under control. Get him to read posts on here as well it will open his eyes. Regarding ascites don't let him have salt and he needs to cut down his liquid intake. Please stay strong x

[Hidden]

Hi

I got diagnosed with Budd Chiari, ended up in St James in Leeds (actually my nearest hospital) and had a TIPS shunt. For me the shunt cleared my ascites fairly quickly (instant reduction followed by a steady improvement over the following few weeks) but know that's not always the case. I now get swollen feet and legs instead which gets worse during the day but clears itself overnight when I lie down.

I'm on warfarin permanently. The blood tests are a nuisance- have had them weekly but generally now every 3 months unless have a high or low reading which may mean going back to fortnightly until it stabilises then gradually increases to monthly and 3 monthly again.

You need to find out what caused blood clots - should get referral to haematology dept. Discovered I have PV with a JAK2 gene mutation which is what caused the clots in my liver. Go to 3 monthly clinic for that now.

Endoscopies I've found ok with sedation - don't remember a great deal about them to be honest.

I'm lucky in that my liver whilst damaged has recovered slightly to the point that when I had another clot in the TIPS shunt which closed it my liver managed to cope with blood flowing through tiny veins in my liver instead.

Realise that there's and endless stream of appointments and tests for the rest of my life but I am still alive and relatively healthy and lucky for that. It is crucial to go to appointments.

Keep on pestering the consultants to answer your questions. They are busy but have always found them helpful and knowledgeable if you quiz them enough.

Hope your husband is starting to feel better and come to terms with it. I found the coming to terms with it took time. I was only 36 at the time it happened and got quite down about it. 8 years on I've accepted it and learnt to live with it.

People on here are extremely supportive and will help where they can. British liver trust website helpful and have spent many hours googling the condition. I find the more I understand the easier it gets to accept although that may just be me.

Good luck and hope he feels better soon

Julie

[Neph]

Hi sorry to hear of your husbands illness. I too have budd chiari syndrome and also had the TIPPS procedure. This was 3 and a half years ago I was only 25 at the time. I am also JAK 2 positive with PV which I take Pegasus for along with warfarin. It is a shock to the system to go from having a normal life and all of a sudden going to doctors appointments and hospital appointments. It took me a long to get use to living with long term illnesses. But with support from my family and friends I got there. Having two young children helps too. I'm positive he will get better soon. Take care x

[SharonB9]

Thanks for your reply. But I'm curious what us JAK2 gene? Is it genetic at all? He's been out of hospital for a week now. Still struggling with the acities but where both trying to keep positive. They haven't found the cause of it they just diagnosed him. But that'd interesting will be asking hus liver doctor next week at his appointment. He's going hospital every week to see liver doctor and having blood test etc. And on warafin having iri twice a week. Thank you for replying really appreciate it. It's all new too us.