Nervous

So I've never written on this page; have done on the MPN Voice ones but never needed to here before. My history is a little complicated;

October 2013 I was Dx with Liver Cirrhosis (14 tumours) & Portal Vein Thrombosis

February 2014 I was Dx with Myeloproliforative neoplasm - Polycynthymia Ruba Vera - (a rare Blood Cancer)

I have had a total of 28 varicies banded and in Easter developed another 4 tumours on my liver.

My liver function tests are pretty good, I am really besides the above in relatively good health; however after a recent MRI showing my Hepatology team in Kings have decided I need to have an assessment for Liver Transplant sooner rather than later; to be honest I never expected to hear this so soon; I thought that this was going to be at least 5-10 years off.....

So anyone have any advice? Dietary? Exercise?

(I don't drink, haven't since I was dx'd not because that's the cause, I just wanted to give myself the best chance I could at not needing a transplant....(didn't work), I don't smoke, used to be a social smoker, only when I drank so that put paid to that, and I am pretty fit, I actively enjoy the gym/fitness classes)

To say I am scared, rabbit in headlights, feel like I am in a water barrel about to go over the Niagara is an understatement!

5 Replies

oldestnewest
  • I am currently listed for transplant, I am focusing on my fitness, not only body but trying to keep my mind healthy too. I flew through the assessment, that is not to say I wasn't worried about it.

    Body wise, do what you can I'm not suggesting you need to be in the gym every day, be guided by what your body will let you do. Mind wise keep busy, I educate myself by looking on google to see how things work, not what things mean, I have learnt a lot and through that I have a better understanding. There is loads of info on here about what to expect from the assessment, I tried to record my experiences.

    Diet.....well I still like to experiment with things in my diet, which generally involve me feeling worst and stopping something, this weeks was soya milk, which is the devils work, I will say no more. A general rule appears to be whole foods/simple foods/all the stuff that is good for you. I have to eat like a horse even though I have no appetite.

    I did some videos of me doing a silly cycle ride for organ donation week, my friend every time I went in front of the camera said, keep smiling, because you've got nothing to smile about, it sounds bonkers and probably is, but smile when you can, it helps.

    A barrel over niagara falls, sounds like a hell of a rush, count me in, can I have my own barrel?

  • Thanks for the reply; I like that you have a fun attitude to life and living; I find too many people get told about illnesses and stop living in case they die in the process.

    I had an appointment yesterday and they said my liver was about twice the size it should be and my spleen is still pushing the 22cm marker, the blood cancer doesn't help because I create more red blood cells which my spleen can't handle!

    This weekend for me will be spent doing a high trees adventure for my daughters 12th birthday (Go Ape) which I love and seeing as she doesn't know what's wrong with me I plan to have lots of fun!

    I shall have a look at your other posts to see what's expected with the assessment (which they wanted me in for on Monday/Tuesday this week (I've told them I can't deal with it that soon)

    I hope you have a good day!

  • My condition won't define/control who I am, so basically I'm just getting on with it.

    You will be worried about the assessment, I got called in without any notice on a Friday evening, I just went for it, its just a bit boring because there is a lot of sitting around, no one could tell me what tests and when, they just turn up and take you off.

    If you do end up going in, I have an appointment Tuesday afternoon with my butcher, so I could have come and brought you some grapes, isn't that what we do?

    Go ape is great, I have vertigo and I loved it! especially the zip wires.

    I'm not sure what my liver is up to at the moment, it must be doing something, i know I'm getting pretty bored of being ill.

    I will have a good day, and so should you.

  • What symptoms do you have x

  • Wow, erm, I don't really know....they mix with each other; the blood cancer and the liver issues; being full constantly, skin feels like paper thin, bruising, fatigue, swollen tummy, shortness of breath, blood levels unstable.....itchy skin, night sweats, day sweats......the list is never ending really.....

You may also like...