I spent a sleepless night and this time I couldn't blame the diuretics or beta blockers or even the disease. I was inspired by all the comments yesterday and when I see my consultant on Wednesday I'm going to let him put me forward for the transplant assessment. I feel nervous and excited all at once. Can anyone tell me what happens after the op? How you feel, what you can do? Just the basics at this point. In fact the decision was easy in the end. Just need to sort the rest of my life now. Slap on that nicotine patch please.
K
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Kez12
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So glad to hear that you have made this decision. It's no good assuming what happens after the op as I should think all cases are different. I can tell you that my partner was extremely lucky as he had no complications & has never looked back. He is healthier now than he's been in a long time. Wishing you all the very best.xx
Thanks very much. And best of luck to your partner too.
K
Assuming there are no complications, the first 1-2 months you'll feel euphoric due to the overnight positive change in your health as well as the steroids and/or opioids you take for pain relief. Then comes a comedown period that can last from a few weeks to several months. During this time sleep can be severely affected, although nowhere near as bad as before the transplant. I'd say it takes around 10-12 months to get back to "normal". This is based on my personal recovery, I'm sure there are others who may have had an entirely different experience.
You will need a full time carer for at least a month afterwards. During that time you're not even allowed to lift a kettle. Last thing you want to do is cause any in internal injuries and/or incisional hernia which would cause completely preventable pain and discomfort, not to mention greatly increase your recovery period.
Reading your first post yesterday I couldn't help but think what an awful situation to be in alone. I'm glad you've made the decision to opt for a transplant because it offers hope for a better future once you've had the transplant and have got through the initial recovery period.
With regards to living alone with no support network several months ago I believed that I might be in a similar situation to yours. I live alone and based on my symptoms of severe liver function deterioration I thought that I might have cirrhosis and that a transplant might be my only hope. It turned out that I was wrong and my liver was just acutely inflamed and I should recover but I learned some important lessons from my experience. One of them was how little I could rely on people like neighbours and even close relatives one of whom revealed to me how little he cared despite being a 'Christian'. Now that I'm on the mend I won't forget the lessons I learned but that's another story!
In the first month after the transplant you'll obviously need to take it very easy. If I had to stay home for a month or longer I have more than enough food to tide me over. I have lots of cans of things like a bean mix that I can open and eat straight out of the can which makes a satisfying meal in itself etc., cartons of long life milk, cereal, eggs which I boil and keep in my fridge and eat as a snack, meat that I've pre-cooked and frozen that I can thaw and eat etc..
The call could come at any time once you are on the transplant list so you might like to think about stocking up now the way that I have so that you can stay at home & take it easy after the transplant and have food readily available that needs no preparation to see you through the first month.
Along with the many other well-wishers on the forum I hope everything turns out well for you.
I'm so pleased to read that you've made that decision. As to afterwards, well, there's an old saying, " Don't put the cart before the horse " ie Prioritise and deal with one thing at a time. It works for me and things seem to drop into place. What you've decided to do is enough for anybody to handle in one go, without other worries. I hope this makes sense and helps you in some small way- my head's a real shed at the moment,lol. 😨 If you want, feel free to PM me anytime, day or night.
You may not have anyone near you down there, but you do have all us on here.
Trust me, straight after the op you'll feel the difference. In terms of what you can do, its just about taking things easy. The day to day living things can be relatively straight forward, but get any shopping via the delivery service most high street shops now offer. Just don't do any heavy lifting, or trying to do too much in general. I'd ask them if they'd put everything away for you too, cheeky it may be, but no harm in asking. General advice is to build things up slowly. Do what you can but don't over do it.
One of the areas where a support worker is handy, is to be able to help recognise if a complication is setting in. However, in your case that person will be found another way. Even if it means the district nurse coming round everyday to check on you. Either way a solution to that problem should not be insurmountable.
If there is a liver transplant support group at the hospital you're referred to, get in touch with them too. They may be able to help with your situation, even if its just more advice on how to get that care giver support you may need.
So it just remains to say - Good luck and keep up the good work.
Great advice. The team that will do it are based at the royal free hospital in Hampstead and my consultant is also one of the team. Apparently it's well known for its work in transplants. Sleep well.
K
You keep stating you have no support network, maybe you can reach out to a local pastor to see if the members can help. I am not suggesting nor implying to become religious, but in some churches there are some good people who take turns with a helping hand.
One day at a time sounds a bit corny but it's worked for us. There will be a social worker linked to your transplant team and they will help you sort out aftercare in terms of money and assistance.You will not be flung out if the hospital without having a package put in place for your aftercare. Look to the future and don't sweat on the small stuff xxx
I was only worried because my consultant is worried about it. He wants me to have a transplant but doesn't want to put me forward until something is in place. I emailed social services yesterday so hopefully something will come from that.
Really happy to hear you’ve decided to go for transplant Kez,it is the right decision and remember it’s ok to be scared,worried and emotional it’s all perfectly natural as for after I agree with others that’s it one step at a time am sure it will fall into place for you and you’ve got everyone on here who trust me are fantastic
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Update
Melt Down
struggling today 
Funny ish HE take. Well it is Monday after all. 
An update on my condition…
