Can bilirubin still be going up even i... - British Liver Trust

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Can bilirubin still be going up even if they can't find blockage

Dixiebell123 profile image
11 Replies

Can't find blockage treating him for a blockage has lung infection acites which they took some out today to be tested bloods not coming down ie bilirubin white cells low liver and spleen still enlarged what else can they do they don't really tell you much just say checking bloods each day he's now on 22 different tablets and that's just in a morning he dosent seem to be getting any better and no answers to when he can come home me and kids are worried sick

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Dixiebell123 profile image
Dixiebell123
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11 Replies
Brummi profile image
Brummi

Hi Dixibell123 , My problem started with a chest infection, the blood test I had showed up a liver problem, I am sure all will be well. My op was done at the QE hospital in Birmingham, although things seem strange the doctors know what they are doing.. I am post transplant and take 8 tablets in the morning and 5 at night. These illnesses take time to locate and cure, mine took 4 months to diagnose. Please wish your husband a speedy recovery I'm always ready to chat. Take care..

ancientadolescent profile image
ancientadolescent

Is your hubby undergoing treatment from a specialist liver transplant unit? If not, I would ask to be referred to one. There are only about 5 such units in England and the one I was invoved with was excellent. It was in St James hospital in Leeds. They would certainly not have left me in the dark. I wish you the very best of good fortune,try not to despair. I had a long journey before I succeeded in receiving the gift of a replacement liver, but my wife and I never gave up hope. If I did it then so can you two.

Karlacairns profile image
Karlacairns in reply to ancientadolescent

My sister had her liver transplant in march still in ICU , lots gone wrong how long did it take you to recover ? We will never give up hope but some days have been very hard for us watching her , so glad your ok now x

Brummi profile image
Brummi in reply to Karlacairns

Hi, I read your story about your sister. I hop that she will get better soon. I had my transplant in June 2013 and for the first 4 months I had a rough time. The reason I had a bad time would have to be said in a private e-mail. The main thing is to be positive , I had my backside kicked a few times, but now it was worth it. I am sure all will be well with her and all though I do not know her please give her my best wishes and speedy recovery....Take care

Karlacairns profile image
Karlacairns in reply to Brummi

Thank u x

PCBnPBC profile image
PCBnPBC

He is in Hospital? <<"and no answers to when he can come home ">> as someone else asked is he at a liver specialist hospital (Birmingham, Leeds, Newcastle London, Cambridge) ? I imagine not at a liver specialist hospital as YOU NEED and you DESERVE and you are ENTITLED to being treated as part of the medical problem, and as such you should have a designated co-ordinator who in terms you can understand should keep you informed. It is your right to DEMAND this, you are trying to hold the fort, support the kids, YOU need help too! They need to supply it, If you are struggling to face up to them, copy this print it and take to your consultant as a message from ME! if you need any specific help message me (and I suspect Brummi would add his support having been through the whole sequence

Brummi profile image
Brummi in reply to PCBnPBC

Sorry about the late reply, yesterday as I was at my workplace doing a course to get ready to go back to work. However I totally agree with you PCBnPBC. Some of the stories I am reading on here are making me shudder. Appointments at 6 and 12 months apart should not happen. I attend the liver clinic once a month and have done so since the start of my problems. Help if I want it is only a phone call away or 4 miles to the hospital where the transplant was done (Birmingham). Good luck to everyone and think positive.

barkway profile image
barkway

hi dixibell, sorry to hear about your problems, you have to ask questions , don't give up until all questions are answered, write them all down so u wont forget anything.

good luck .

Dixiebell123 profile image
Dixiebell123

Thanks all for your support he's at blackburn royal under a liver and gastro specialist I will be asking more questions tonight when I go visit it's hard because I work during day I do have support from his detox nurse and mental health nurse they are trying to get some answers to but hopefully we can find out what's going to happen next

ancientadolescent profile image
ancientadolescent

I had my transplant 18 months ago. I was on the table for 10 hours and afterwards,because I was so ill, I was put into an induced coma for 2 weeks. When I came round I hallucinated for a further week and spent another 2 weeks in hospital. Afterwards I spent a further week in a rehabilitation home and trained to walk and climb stairs again. Now, although I am physically not fully recovered (my balance is poor) my brain is working overtime and I definately feel a part of society again. I consider myself to be very fortunate and if I could do it so can he. Don't give up hope my wife and I never did. The very best of good fortune to you both.

Dixiebell123 profile image
Dixiebell123

Hi all my husband became more ill on sat due to duretics his kidneys are not working as they would like he became more confused he's now on fluid drip and albumin bilirubin went up again they tried tube up his nose couldn't manage it and pulled it out keeps refusing meds and tube sleeping all time now had no neutrition for 5 days consultant seeing him again today just hopeing he can snap out of this and take the care offered could he be just refusing because he's confused and weak?

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