no transplant needed!

[Harriet-sarah]

hi all just wanted to share what is happening to me to date. It’s been a long journey but I think (I hope) I’ve got there. After recovering from a Decompensated liver from just 2 weeks to live, then it was 3 months, then 1-2 years then 5 years to live, I have now been given the news that ive done so well I am now streering away from a transplant altogether! I saw the transplant team yesterday and he said I now can realistically look at living a full live well until I’m at least 60 without a transplant. The only thing he is concerned about is my fluid in my belly and he said draining me all the time wouldn’t be ideal and I’m not a candidate for TIPS so said he would look at transplant as an option. The other thing is that my latest scan showed a cyst and a dark patch which he wants to keep an eyes on if it is anything sinister like cancer worst case scenario. Or it coul£ just be the rough texture of the liver or a group of small nodules. I go back in 3 months for a repeat scan. Bloods are still low but slowly improving. I think I’ve dodged a very large bullet, fingers crossed thing will keep improving. I said to him the only thing that gets me is the fatigue and he said that side effect is irreversible transplant or no transplant and will always have that it’s learning where my limits are and how to manage it, so if anyone who has fatigue what helps you?

all of you thank you for all the support you have shown me over the last year, you have been so inspirational

Sending hugs to you all x

[oxaram]

Hi, its great to see you wont be needing a transplant anytime soon. Keep up the good work and stay healthy

[Oldbits]

Hi, brilliant news. It sounds so positive. Fatigue is a problem for hubbie, but he now knows his limits on busy days and has made napping an Olympic sport. It took him a while to listen to his body and not to feel to guilty about a nap also to be realistic about how much he can do in a day even though he feels so much better. However, he gradually increased his exercise and that has helped with his stamina. hope they sort your fluid out soon. Keep going, whatever youre doing seems to be working xx

[RugbyMama]

Fatigue also a problem for my husband but that's probably because he has 3 diagnoses (haemochromotosis, cirrhosis and T1 Diabetes) that all cause fatigue.

We have found that going to bed earlier, even if he's not sleeping just being in bed earlier, making sure he takes regular breaks at work, e.g. taking a slightly longer lunchbreak and making it up later in the day (he works from home and chooses rhe hours he works so has flexibility to do this) gentle exercise e.g. walking or swimming all help. We ensure we have good downtime, e.g. at weekends we don't plan big things for Saturday and Sunday and make sure there's time for an afternoon nap. And self-care! Nice warm bath, ensuring we have a plan B if he's really tired and can't do what he wants to etc.

[Harriet-sarah]

thanks guys I think I’ve been trying to ‘cure’ the fatigue rather then managing it, and the more I try the more tired I get then I get stuck, that must be hard having double whammy fatigue and even holding a job I’m dreading, as I don’t know my limits yet but I will figure it out in time I guess x

[Hidden]

Well done so happy for you xxx