Advice after all else is failing

[Bounty55]

My brother has cirrhosis and has been having tranfusions due to low platelets for the past year and this has kept him out of hospital. Suddenly the transfusions are not working and he is now so weak he needs a wheelchair. He has had an iron tranfusion and ultrasound and now a camera down his throat but they say they can't see what is wrong and why he is not well. What can I do to get him more help? Hope someone can help.

[carmik]

Had hw been seen and assesses by a hepatologist?

[carmik in reply to carmik]

Sorry spelling errors due to this dam predictive

[Bounty55 in reply to carmik]

Thanks for responding. He has been seen by consultants and doctors at hospital. They are really uncertain as to why after having a good year he is back to square one. The tests are giving no clues. I have just emailed a consultant at Newcastle liver unit for advice too.

[Hidden]

What's caused the cirrhosis?

[Bounty55 in reply to Hidden]

He drank a lot about 15 years ago but nothing since. He isn't alcoholic. Not sure if his condition is from the drinking when he was younger or something else. The doctors don't seem to know and after each test say not sure what is next as tests are not helping. Thanks for responding.

[AyrshireK in reply to Bounty55]

Is he just attending a local hospital or has he been referred to one of the transplant units? It sounds like this is pretty serious now and he should be being seen by proper liver specialists and rather than just doing lots of tests, he requires treatment and possibly a transplant assessment before ( I hate to say it) it becomes too late.

Push for referral to a transplant unit .... I see you mention Newcastle in a previous reply. He should be being seen at the Freeman if that is your closest t/p unit.

Don't let them just keep running tests that are coming back with no answers, he needs treatment a.s.a.p.

Wishing you both the best of luck, Katie

[Bounty55 in reply to AyrshireK]

Thanks Katie. He is just at local hospital. Your advice is very helpful and I will follow it. Most appreciated.

[Hidden in reply to Bounty55]

Yes all the best xx

[carmik]

Sorry but you do really need to see a Hepatologist urgently. Don't let them keep fobbing you off. There are lots of reasons for cirrhosis unrelated to alcohol. Had we not insisted that my hubby did not drink atall we would have been in the same boat as you are now.

I pushed and got him into transplant unit. They discovered the reason and he was looked after very well ,up to and after transplant less than one year later.

Good Luck

[Bounty55 in reply to carmik]

Thank you for your message. Going to push as you say. Not sure what resistance I may get or not but going to Newcastle or getting help from Newcastle has to be the way forward. Very much appreciated.

[Gemma68]

The other alternative I suppose is to plonk yourself in A&E and refuse to leave until they sort a referral out or drag one of the specialists down to you! Good luck and hope this gets sorted for you.

[Bounty55 in reply to Gemma68]

Thank you so much. Your messages are really helpful.

[Millie09 in reply to Bounty55]

I agree with gemma68, of it were me i would bypass Drs etc.. and go to A&E. I have done it for two family members and so glad I did! Sending my very best to you both

[Bounty55]

Good news. We are waiting for a bed at Newcastle. Tomorrow plans will be set for next stage. TIPS or transplant. Things are at last moving. Will keep you posted. Thank you again everyone who has posted.

[carole-shaw in reply to Bounty55]

Good luck hope everything gets sorted soon for u xx

[Bounty55]

Just as we thought things were on the up. Today went to hospital and the doctor said that my brother will have to go to Newcastle as an outpatient. He said they had written a letter of referral and we just have to wait. My brother needed more platelets today as he is bleeding inside so the count isn't going up. I was upset but kept calm and asked for time to discuss with consultant as my brother felt positive and basically feels let down once again. The doctor said he would speak to consultant and registrar tomorrow morning and hopefully we'll understand more tomorrow. I'm losing trust in what is being said and done. They have again spoken about TIPS so perhaps this is done as outpatient. Feel like we are in for a wait. So frustrated tonight.