Thanks to everyone who responded to my last post re going to Leeds to transplant unit.
When we were there we spoke to a specialist alcohol nurse who said my husband shouldn't be using anything with alcohol in it. She mentioned sweets, gels etc. Since being hospitalized a year ago he hasnt drunk any alcohol and hasnt wanted to.
Over the last few weeks hes been having really painful shoulders and back and so has been using Fenbid gel that you rub in to relieve the pain. Hes found this to be quite effective. However Fenbids apparently got alcohol in it as well as ibuprofen which is apparently bad for the liver. Just wondering if anyone knows of any alternative to Fenbid or anyone who has also had this problem? Hes been told he can have 1 paracetamol very occasionally. Hes got a telephone appointment with his gastroenterologist next week.
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Corrine1
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The transplant assessment team will need to know that your husband has been using Fenbids and possibly hand sanitizers. Also if he's used any aftershave or any other alcohol-laced products. This way if any alcohol was to show up in a blood test this can hopefully be explained away. If you fail to tell them, and they later find traces of alcohol, then he may be excluded from the transplant waiting list.
The transplant team have to be so sure that any future liver is going to be respected and that the expense and dedication of all the staff aren't going to go to waste.
Ibuprofen is harmful to the liver. I would ask a liver specialist nurse for advice on which pain killer medication to use. Codine might help, but once again I would seek professional advice first.
They also should have advised you to avoid any alcohol in food and cooking etc. Gravy with red wine, chocolate liqueurs etc. He must also avoid any alcohol substitutes, not only do they contain small amounts of alcohol but also demonstrate that he is not fully committed to abstinence.
Any deviation from compliance, would see him removed from the transplant list, so the implications are far reaching.
Once you get into the swing of this, it falls into place but it’s definitely important to remain vigilant. This is definitely unique opportunity to receive a very special gift.
Is it muscular pain or referred pain from liver/spleen? Has he tried hot water bottles/heated rice packs - they might help. OR what about a TENS machine to try and block the pain signals.
He originally thought it may be liver related but the specialist we spoke to didnt seem to think so. Thankyou for your suggestions I shall pass them on.
Please do get specific guidance regarding appropriate pain relief from the liver specialist.
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