Hello all, it is the first time I have posted, and so thank you. My husband is on the liver transplant list (since January) and I am his carer. He suffers from an hereditary condition, Hemachromatosis, but by the time it was diagnosed he had liver failure. He had the TIPPS procedure in September following a catastrophic bleed which put him on life support for a couple of weeks. I guess I knew our lives would change when he got out of hospital but I wasn't prepared for this. Obviously the bleeding has stopped but he has returned home a different person. I am heartbroken, he has no energy, very rarely gets dressed spends most of his time in bed... when he does get up he shuffles around. He can't hold a drink in his hands some days because of the tremors. Our hospital visits are little short of traumatic. He now suffers from sporadic episodes of encephalopathy which were alarming at first, and the doctors don't seem to be able to advise me how to manage it. I suppose what I am asking is anyone else been, or indeed is, going through what we are going through? Is this just 'normal' following TIPPS? Although it hasn't been said out loud, my husband is 67 next week and a rare blood group...so I am not sure how/if he will ever get a transplant. Thank you for reading this. SHARRON C.
TIPPS Procedure: Hello all, it is the... - British Liver Trust
TIPPS Procedure
Hi Sharron, by the nature of the TIPPS procedure it causes blood to bypass the liver via the channel they've created with the TIPPS - this means the blood isn't being de-toxified and therefore patients often get a build up of toxins meaning Hepatic Encephalopathy can be made worse.
Is your husband taking lactulose and rifaximin to aid with staving off the HE?
A rare blood group can often actually make the progress to transplant even quicker, group O although the most common can actually be the longest list because although there are more O livers there are also more folk waiting for one.
Hang on in there, you husband has been listed 3 months so not the longest wait we've heard of - with his condition as it is you might find he is pretty high up the list and you're just waiting for a suitable donor.
67 isn't too old either so providing his weight remains stable and you can keep him as fit as possible (short walks if he can manage it to keep his lungs and heart healthy) he'll hopefully get his transplant in the near future.
Wishing you both all the very best.
Katie xx
It's no consolation for you both that your husband's diagnosis was late: haemochromatosis affects 1 in 200 of the Northern European population but many are not diagnosed until damage has been done. I hope your husband gets an early transplant and that the damage can be reversed.
I assume you have been advised about the importance of family members being screened for the hereditary condition.
Mike
Thanking you so much forbyour reply. Yes all of the relevant family have been tested and thankfully they are all clear. Bestbeishes. Sharron
Hi Sharron,
I really feel for you as I know this is a difficult time for you both.
In terms of managing the HE - is your husband on rifaximin and lactulose?
Lactulose is essential, as your husband must have his bowels opened regularly to reduce his symptoms of encephalopathy. Sometimes long periods in bed and not eating regularly can hamper regular bowel movements.
(Sorry to go on abou this but it really is so important).
Try to encourage a regular sleep wake cycle if you can and don't forget Rifaximin and lactulose (3 times a day).
Which liver centre are you under?
Wishing you a quick call for LT.
We are in a very similar situation as you.
HL
Thanking you so much for taking the time to reply. I am meticulous about giving him his lactulose three times a day and the rifaxamin twice daily (even on days he thinks I am poisoning him) being adamant I have just given it to him! He is under the transplant team at the Queen Elizabeth Hospital in Birmingham.
When I asked the consultant how I could alleviate his symptoms on a bad HE day they didn't seem to know. Have you found anything that can help... maybe more fluid and extra lactulose?
I am pretty new at this but if I can be of any support to you in anyway I will gladly help.
Once again your reply means so much to me. Best regards Sharron
Great to hear from you - it sounds like you are doing a fantastic job.
We are listed at Birmingham too since the beginning of Feb.
I think you can titrate the lactulose yourself to achieve 3 good motions / day. But conversely diarrhoea can sometimes make HE worse, so be cautious.
It's good to talk to someone in a similar situation. Anytime you need a chat don't hesitate to message me and let me know how you are both getting on.
HL x
we successfully avoided hospital admission by firstly recognising the symptoms of encephalopathy and increasing the laxtulose using enemas if really constipated and administration of a 'rescue pack' of different antibiotics. this was after being admitted previously on 8 occasions in just 9 months. I'm now one week post transplant and doing well. so try to keep as fit and as well nourished as possible, I managed to do this despite being an insulin dependency diabetic.
Hi sharron
My husband too discovered recently he has haemachromotosis which has caused cirrohosis end stage. He did get assessed for a liver transplant at st James in Leeds last sept but they said he was not poorly enough. He is very tired and has a lot of pain/aches but still working and trying to keep active. I hope things work out for you and your husband. I find it it difficult at times as there is a feeling of not being able to help him when he feels unwell but try to be positive and not dwell on if only we had discovered he had this disorder years ago. Our children have been tested and they carry the gene. He continues to have venous blood removal every fortnight to reduce his iron levels
Ascites drain
Hi, haven’t been here much but
Liver cirrhosis 
TIPS PROCEDURE 
