Feeling lost... how will I cope?

[Whip_pet]

I am feeling very low this week. I am constantly worrying about my husband who has the liver disease. Scared about him needing a transplant then scared about what happens if he doesn't get listed. How do partner's cope when loved ones are so desperately ill?

[AyrshireK]

Hi Whip-pet, I have been supporting my hubby who has cirrhosis since April 2012.

On every step of the way we have been a team in this, I have learned lots about liver disease (doing some on line courses and obviously being an active member of the forum) and I find that I basically manage hubbies condition, do all the arranging and liaising with medical staff. Sadly hubby has issues understanding and explaining himself and he has a diagnosis of mild HE. Basically he gets on with living the best life he can and I have become carer, advocate and manager.

I accompany him to all appointments (I have to drive him anyway as he has had to stop driving) and before we go in we make a note of all meds, all symptoms and all questions that WE want to ask. You have to be a team. Two pairs of ears are better than one.

Just an hour ago I was dropping hubby off at the Royal Infirmary of Edinburgh where he's been admitted overnight prior to having a procedure under a General Anaesthetic there tomorrow.

I had to go in with him to do admittance paperwork because he wouldn't have coped on his own. I had to pack his bag because essentials would have been forgotten.

I have become wife and carer but the caring part hasn't overshadowed the wife part it's just how our relationship is.

Hubby was assessed for transplant in 2014 and I was able to be part of the process infact it was essential to be part of the process. Hubby spent 10 months on the list before being delisted because his condition stabilized and took him out of the criteria for transplant. We had mixed feelings at the time thinking the light at the end of the tunnel had been snuffed out but what we should have felt was great we are no longer trapped and we trust that doctors will reevaluate if things deteriorate in the future.

We follow medical guidance re. diet etc. and we do loads together. A lot of it is about getting on with life the best you can, not dwelling on every little thing. Yes be aware of the signs to look out for re. deterioration, get a good relationship with specialist and a means of contacting them if need be, make sure you know what tests should be organized and when and don't be afraid to chase things up if you think things have gone too long.

Be a team.

Katie

[Whitethorn in reply to AyrshireK]

We are in same situation we got a light at end of the tunnel a month ago went for 2 day t/p listing which hubby just passed but needed one stent in artery done, this turned out to be 3 needed at the aniagram and they said they couldn’t do it, this changed in 4 mons from having first a/gram in jan, we can’t believe things changed in such a small time so getting 2nd opinion as he can’t now get on list, i

[Ewife]

I know just how you feel. My husband is listed for transplant and it's been harder than we ever imagined. We've always been a team (20 years married and childhood sweethearts) but I find Covid restrictions have made it really difficult for me to be part of this journey. He has a scan this week and a face to face appointment the following week. For some reason I'm terrified they might take him off the transplant list, whilst I am equally terrified of him having the surgery. After hitting a very low spell a few months ago, I've started exercising/going to the gym to try and use up the excess stress/adrenaline which was making me miserable. This has really worked for me, I feel so much better for it. Above all, I realised that I needed to take better care of myself, as I wouldn't be any good to my husband or kids if I continued to feel so rubbish. My son has also been really struggling in school, and eventually we got referred to more specialist help, which in turn has helped me understand more how I was feeling and processing it all. I definately recommend reaching out for professional help if you can. Thinking of you

Xx

[Lisa-H_1]

Hi, i totally understand. I spend much of my time feeling miserable. I have a few good days then i feel bad again. My husband has basically given up the drink but i know he has sneaked a couple of beers a couple of times and i think my issue is the trust issue i can't seem to get past it and it is eating me up. i do need to get a grip but with everything going on it is so hard. i fully sympathise with you. Good luck to us all. xx

[Richard35]

Hello I'm in same boat not everyone needs a liver transplant I hang it out as long as I can I'm a boxer building site worker bouncer at clubs I get servere fatigue itching brain fog I take every day as it comes and don't use Google doctor

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Hi Whip_pet - I can see that you have already received lots of support from other forum members but if you would like to chat, our nurse-led helpline is open from Monday to Friday 10am to 3pm on 0800 652 7330. Take care, Trust10.

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I just want to send you hugs. How not to worry?