Hi all. I have compensated cirrhosis (stage 2 with portal hypertension & oesophageal varices, but no ascites), and there's no sign of the NAFLD that originally caused it. My understanding (PLEASE correct me if I'm wrong) is that I'm now on a very slow march towards stage 3, 4, and transplant - I can't stop it progressing, but I can try to slow it down by eating well and avoiding alcohol.
Now, I've read online that after a transplant you can be discharged from hospital as early as 6-10 days after the operation, but returning to work is at least 3-6 months later for light duties only. However, my job involves sitting in an office cubicle all day using a computer. The most physically strenuous thing I do all day is make myself a cuppa. In fact, with this lockdown lately, we've discovered I can easily work from home.
So my question is this: If I'm well enough to leave hospital after 6-10 days, surely I'd be fine to return to work after a few weeks, right? Or am I missing something? Are you basically bed-ridden for a few months (i.e. even sitting upright for short periods is uncomfortable)? Or maybe all the medications and the healing process just make you super tired and give you "brain fuzz" for a long time? Or, is because you're on immune suppressing medication, so you'd want to avoid the general public for a while in case you catch something?
If it's just the last thing, it sounds like working from home would actually be a perfect solution.
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tmo793
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I returned to work 3 months after my transplant but am on my feet all day, to be honest if I did your line of work and can work from home go for it as long as you feel you can, the thing is we all heal very very differently so putting a time scale on yourself is putting more stress on a very stressful time,the medication could also play a part and in my case it took me longer to get used to this than the op itself.
If you do need a transplant and your lucky enough to get one then your only thoughts should be about yourself and your health
I think that you would be better off putting your efforts into your current circumstances. Stage 2, is compensated and whilst cirrhosis is not reversible, by eating well, exercising etc, it is manageable.
Personally, I wouldn’t start thinking about the work situation, until and if you get to the transplant stage, should that happen. Please follow all the advice that your doctors give you and I wish you every success in dealing with your health problems.
You are way jumping the gun, if you've got compensated cirrhosis and the cause has been removed or seems no longer active then then it is in no way inevitable that you'll go on to need transplant. Live for the present, don't get bogged down with what ifs.
My hubby was diagnosed with decompensated cirrhosis back in 2012 due to burned out auto immune hepatitis . He was assessed and listed for transplant in 2014 but delisted 10 months later when his condition stabilised. Now all this time further on he continues to be stable and we live every good day the best we can. We are just back from 6 nights away in our caravan and went walking every day including some pretty punishing hill walks of up to 6 miles in duration.
We were told he was in a window and may eventually need a transplant but we don't think about it at all. We just keep a quiet eye on things and make sure he's monitored properly by medical staff.
My hubbies local consultant has people on his books who have had a diagnosis of cirrhosis for 20+ years and still don't require transplant.
Katie
Good morning tmo793,
As our forum members have suggested, there is no assumption that you will need to have a liver transplant .
May I suggest you focus on all the positive lifestyle changes that will promote good liver health - abstinence from alcohol, nutritious diet and exercise where possible.
It is also important to attend liver clinic appointmants and I am sure they will continue to advise you on any staging or progression - if it occurs.
One of the aspects of having a liver transplant that is often overlooked is the mental aspect of the liver transplant journey.
Some people can find that the harvested liver isn't viable enough to be transplanted and they have a disappointing journey home again. I have known some people who have had to drive back to Wales from Birmingham on more than one occasion.
(I suspect most of these jounreys and done in silence). So, disappointment is common.
The other aspect to be considered is that nobody knows how their liver transplant is going to affect them mentally post-transplant. Some people suffer terribly from, "Survivors Guilt", while others might suffer from "PTSD". Once a person leaves the hospital, there is very little support for these conditions within the local communities especially during lockdown.
I personally suffered from survivors guilt for 10-months. I also had to contend with bouts of encephalopathy due to brain damage. So, there are other aspects to consider before planning to return to work.
Each liver transplant journey has so many different variables. The secret has to be… Baby steps my friend, baby steps.
Ok, you may be way ahead of the game with your question, but i shall try and give you my experience.
In reality everyone will recover from transplant differently and at different rates. In most cases, when people get to the stage they need their transplant they are not in a great state and 3 months is a rough average of what seems to be the recommended minimum. It is possible to return sooner, but that will very much depend on your individual circumstances. As you go to clinics post transplant these are issues you can discuss with your consultant and you can agree together what is right for you and your recovery.
It does take a long time to heal after transplant. Whilst you're not likely to be bed ridden as such, even doing the simplest things will take a fair bit of effort. Its not something you want to rush either. You need to allow yourself time to recover. I appreciate that may not be as easy for those on contract hours, but none the less it is really important to give yourself that time.
In reality you'll probably find that returning is more taxing on you and your body than you'd think. You will still get tired pretty quick and to be honest, after 3 months you may still be a wee bit sore. I too am a bit of a desk jockey, lol, and my recovery was pretty good. However, i started back at work at just over 3 months and it was exceptionally tiring. It took me another 2 - 3 months to go back to being full time. I was on a phased return, with part time hours and short weeks up till then, building up gradually over that period. I could also work from home when needed.
I live in France and they keep you in longer over here. I had had bad encephalitis and didn’t walk for over 2 weeks. I spent 5 weeks in hospital. However I accompanied my daughter to uni 10 wks after transplant.
I still get tired and if I have 2 or 3 days full on I need to rest the next afternoon. I work with my hubby so this is ok.
I think that you will not know until you are there. Don’t worry about that now. Just keep concentrated on being as healthy as possible.
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