Awaiting transplant struggles

Morning

Iam on the list for transplant due to hypertension and clots around my liver - I had BA from birth so at 31 did ok but at the moment I'm really struggling.

My partner is 5 months pregnant 🤰and I can't seem to muster the energy or health to be of any use. I can't seem to sustain working -im up and down like a yoyo and I'm only doing 3 hours a day when I make it in. Currently I'm on stat sick pay so I don't get any extra pay unless I get to work.

I feel rubbish not just physically but as a bloke, I have a 26cm spleen which also helps making me protrude from my abdomen and I'm a Murkey parley yellow colour more often than not.

I just feel useless - I've not a lot of support other than my family and on occasion out of frustration use them as an emotional punch bag.

I don't know what to do -

3 Replies

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  • I can sympathise. I was ill with cirrhosis (since had transplant) and undiagnosed coeliac disease, when my kids were really young. I felt like a wreck most of the time and was married to a very unsympathetic wife (now ex). My kids still remember me laying on the bathroom floor with my eye's shut when I supposed to be bathing them. Driving to and from work was terrible and I'd often nearly fall asleep. On getting home I'd sit in the car too exhausted to face my ex who immediately wanted me to take over.

    The emotional punchbag bit comes from frustration, and exhastion I did the same. A person can only do so much, my other half continually compared our life style to others. Cherry picking their holidays, and their car and their childcare from various other couples. Absolute nightmare! Good luck

  • I'll be honest, I've not found anyway of generating more energy, I have a 4.5 year old daughter and there is no way I can keep up with her. I do what I can, when I need to sleep or rest I do, I try and save up what little energy I have if I know we are going out.

    I have a fairly sedate office job who are very understanding, so am managing work, although this week will take its toll as working 5.5 days, then have endoscopy on Sunday!

    It is difficult, I often want to beat my chest and carry on as normal, but I just have to change my level of achievement and be thankful for what I can achieve.

    I'm not a fan of drugs, but since taking propranolol to help with portal hypertension/varices, my overall temperament has got better, that's because it also lessens your anxiety, I wasn't an anxious person, but I can feel a difference.

  • Hey!, You are not useless, at this time you are understandably worried. Things will get on top of you ,we are only human, I got narkey and abrupt, when I felt that happening I took a stroll. When fatigue starts take a rest most of all be positive.

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