Not Missing in Action: Hello all....I been a bit... - MPN Voice

MPN Voice
5,713 members β€’ 7,852 posts

Not Missing in Action

β€’31 Replies

Hello all....I been a bit quite recently - not intentionally. I have been over on the Liver Support page.....

For those of you that don't know I have Liver Cirrhosis and Portal Vein Thrombosis along with PV. Well as things turned out my liver is a bit more useless than I first thought, so on Monday 23rd I am going in for my Liver Transplant assessment.....

For the PV this is a good thing, new liver and portal vein will help reduce the size of my spleen and bring all my blood counts to normal range and maybe even give me the chance to reduce my medications; the haematology team are pushing for me to get on the Ruxolitonib (please don't chastise me for my appalling spelling) but are having to apply for special compensation.

I hope your all well - or as well as you can be.


31 Replies
oldest β€’ newest

Lovely to hear from you Chelle, so sorry to hear you have all this to contend with as well as the PV. I guess this has all been a knock to you new business as well?

Good luck and I hope everything works out well for you, you're such a cheery person.

Judy x

in reply to piggie50

Well up date on the new business - I got a full time job about 8-9 weeks ago and it looks like I'm quite good at it and it may go on leaps and bounds.....and I haven't told my employer that there is anything wrong just yet - opps.....

Not even sure what I'm hoping is going to come of it!

Hi Chelle, considering all you're having to deal with and at such a young age it sounds like you're coping remarkably well. Is the liver problem actually caused by the PV?

I wish you well and good luck for the 23rd.

Mary x

in reply to mhos61

Hi Mary,

The liver problem is indirectly related, I had a massive clot which they think I have has from my early teens, in my portal vein which has essentially starved my liver of food leading it to dye and develop tumours. The PV they think I have had since I was a teen too.....its just never been picked up.

Thank you for responding.

Best of everything to you Chelle,so much you have coped with .Good Luck with the next phase.

in reply to Inca

Thank you. I feel like it's some else's life tho! I just get to see if from a different perspective.

My goodness such a lot happening for you .

Good luck with the transplant assessment and hope you are listed and get the perfect liver for you .

Helen xx

in reply to Helen1952

Thanks Helen.......scary stuff. once the assessment is done they will decide if I am a good candidate. Its like a job interview.....x

Welcome back Chelle, wow you have really have had a rough time of it, but your attitude is amazing keep it up, your friends on here will be a rooting and a tooting for you.

A new liver a new start !!! Thank god for the transplant system, I had to come off the organ donor register was told I could not donate due to my ET and what drugs I take, such a shame.

So good luck.

Jean x

in reply to Superwoman

I know I feel Bad not being able to give blood especially as the drs are so willing to Bleed Me all the time! Lol....thanks for the words of encouragement x

All the very best to you Chelle , hope all goes well.

Thank you x

Good luck to you .Many prayers are sent your way.

Hi Chelle. Hope you are doing ok. Think I have similar issues.. I have PV too which has caused blockage to two hepatic veins over the years.. they call my liver issue Budd Chiairi though (I don't have tumours or varices as far as I know, so far πŸ™„).. sounds similar as I also take hydroxy and warfarin (amongst other things). Glad to hear of someone with similar problems... You go girl! 😍

in reply to Ticchic66

Message me whenever you need to chat! It can be tough when you feel On your own esp with a multitude of problems....xx

in reply to Chelle_

Thanks. Will do that. Good luck to you xx

Wishing you well in everything! πŸ€πŸ‘ x

in reply to lizzziep

Thanks Liz xx


Hi Chelle, good luck with everything. Maz x x xx

in reply to Mazcd

Thanks Maz! Fingers crossed I can get back in track for the GNR 2017!! Xx

Chelle, how lovely to hear from you. My what a lot has happened to you since you left the navy. I often do think about you and now you are heading for a liver transplant. What an adventure for you to be preparing for. I wish you every possible good wish. I am still at Guy's and also still on the Ruxalitinib which suits me really well. Good luck with that too.

Let us know how things are going for you won't you.

Linda x

Hi Chelle. Good to hear that you are still cheerful and positive. Good luck with everything. lots of love Mel xx

Hi Chelle,

All the luck in the world for your new liver and the Ruxolitinib.

Truly hope everything improves for you.



Wishing you all the best with your liver transplant assessment. Hope life throws nothing else nasty your way! Karen x

Thank you - means a lot.

Hi again Chellaston, , great to see you on Forum. You are an inspiration and I'm sure your positive outlook will stand you in good stead for the challenges ahead. . Easy said I know , but some people just give off an aura or vibe without meeting them and that's how I "see"you. I sincerely send you my best wishes and let's hope they rush through your app for Ruxolitinib to get you on track. . .

Cheers Chris x

Sorry just noticed auto incorrect as eyes not good, , HI CHELLE! !!! AARGH 😲😲

in reply to JediReject

ha ha no worries - thank you. x

Good luck with everything, hope it all works out for you x

Good luck and hope everything works out well for you. I will be thinking of you.

HI Chelle, we haven't met, so here's a virtual handshake and smile. It's a pleasure. I just added a little prayer for you to the many I'm sure you've already accumulated. They work, as I trust you know. Jerry

You may also like...