What a journey!!

Hi I haven't posted lately as December turned out to be a nightmare. Hubby had banding done end of November. Was admitted to hospital 5th December with a bleed. Things quickly went from good to bad. Were told the chances of recovery were 45/55 as his potassium level was high toxins in his blood etc. We were then advised that they wouldn't do cpr or be put on life support. Gutted to hear that but his quality of life would be poor so understood the reasons. Hubby rallied and after a stay in hospital came home. He now has suspected ascites, went in to have it drained but no fluid found. Now waiting for an ultra sound to a) check the liver and b) to locate the fluid. He's very moody which I suppose is understandable. I can't relax - the episode at the beginning of the month came with no warning so I'm on high high alert. Neurotic I think describes me well. I never knew this could be so hard and so worrying!!!

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  • Hi Bever, what a nightmare; so sorry to read of this; i was trying to find out why hubby is not a suitable candidate for transplant re looking at your past posts; why is he not?

  • He's not suitable as he has other medical issues including a heart murmur and would be at a great risk of stroke or heart attack. The consultants consider him too high risk - says he would t survive the gruelling operation and they couldn't put him on life support.

  • You have my deepest empathy; i can understand why you are not relaxed; the fear must be dreadful; do you have family support/friends? xx

  • Yes I have the support of a small but close family - our 2 children are there when I need them. It's a hard time for all and so hard to talk to them about how I feel. They are trying to find their own way through all this. Diabetes caused all this and we had no way of knowing what this awful condition could do. The stigma that goes with cirrhosis is hard enough to take but makes me angry when everyone assumes it's due to alcohol. My hubby is t total and always has been. ( not a dig at those who have suffered because of alcohol) but there doesn't seem To be much compassion for either cause.

  • Thank God you have the children; but yes, so hard for you all; diabetes can cause so many issues; i never knew this was one of them; how sad. Yes, i understand; some people instantly will think its due to alcohol; whatever the cause, people should be treated with compassion; Those in the medical profession without this, need to find alternative work. xx

  • No we also didnt know. Diabetes causes fatty liver disease with then develops into cirrhosis if not diagnosed early enough. He had yellowing round the eyes for years but it was never picked up. It wasn't until he had chronic anaemia and a fall and was hospitalised that they discovered it and that was only a year ago. Everything is moving too quickly .......

  • You're not being neurotic, don't put yourself down - you have responded to an extreme crisis, and it's hard after that to return to 'normality' whatever that is...you must be worn out yourself and still in a state of worry about what comes next. This month has been tough for us too, and the disease is so so horrible, unremitting, elusive - you never know where you are, what to do, and you just have to cope - and cope - and cope - day after day, week after week. Be kind to yourself, you've done amazingly and will go on to be amazing. Hope things ease and your husband feels better, also that you may have some time for yourself to process and reflect on things so the future feels a bit lighterxxxxx

  • I'm in the same boat, it is exhausting to live this way but what choices are there? Sometimes it is so hard just getting through each day. Sometimes I'm even scared to go out in case something happens and I'm not there....

  • I can understand that fear. My greatest fear is will he have survived every morning? And like you a fear of going out just incase.... Emotional wreck doesn't describe how I feel at times, I want to curl up in the corner and just cry but that doesn't help hubby. So I paste a smile on my face and start another long day. I don't know how he feels when he has really bad days full of pain and discomfort - hopefully all those of us that need that inner strength to support and care for partners will find it. X

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