Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for 14 with no signs of it happening soon.
My spleen is now literally taking over my body! Last scan it was 28cm, I saw one of my Heams last Wednesday and he had a good old prod of my tummy and said 'well that's almost the size of your tummy' - opps....lol....I asked him if it would get too big and if they would ever remove it, he said even if removing was an option - its now too big! well well....the only options that we have really are liver transplant and Ruxolitinib (apologies for the spelling) So I have approval for Rux, however they wont start me until after transplant - so back to square one really!
So there we go, there are other things, but that's the really good stuff for the time being. I hope your all keeping as healthy and well as possible! x
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Chelle_
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Oh dear Chelle, what a lot you’re having to cope with! I do hope a transplant is found for you soon. Thanks for keeping in touch, I often think about you and wonder how you are doing. You are such a bubbly girl and always look on the bright side. You deserve the very best.
sorry to hear that there has been no advancement on the liver transplant front. I really hope it won’t be too much longer, so that you can attain a quality of life that you so deserve.
Sorry to hear Chelle, that there is still no news on the transplant, must be very frustrating, and your spleen is now sounding as if it is very large, but you still sound very cheery, it’s good to have such a great outlook on life, it’s amazing how all us peeps with an MPN just get on with our lives no matter what it throws at us.
So keeping my fingers crossed that one becomes available soon, and your body can get back to normal ( well as normal as it can ).
Chelle,I thought we would hear soon that your op was done and dusted.How you keep so positive and cheerful is amazing and a credit to you.Best of best wishes for a very soon match ,my warmest thoughts to you,admiration and e hugs ,Sallyxxx
Hello Chelle I just wanted to wish you well, along with all the other people here , I hope the transplant is not much longer for you.Take care, love Gill
I so feel for you Chelle to have to cope with a transplant and such an enlarged spleen is horrendous. My spleen is 23cm but growing and is just soooooo v uncomfortable as I'm sure yours is too. I've been told they can't remove the spleen and the rux seems to have done as much as it can!!! I'm off to the forum in Belfast in March and just hoping something will crop up!!!! Finding comfy clothes to fit is a nightmare would love to stay in my pj's all day!!!!! Have a big fat tum and v v skinny legs so need to wear loose tops to hide the bump!!!! I wish you all the v v best with your transplant in stage one of your journey fingers crossed you will get a call soon.xxx
My spleen did something similar - grew to a crazy size - and was eventually removed along with a bunch of other fixes during a big surgery. All I can say is that when the day comes that you can get rid of that sucker, you’ll notice it for the better. I looked a lot less ‘tummy-heavy’, I could breathe easier (spleen was restricting a lung a bit) and I just generally felt a bit lighter and more energetic (for a while).
Hope you get things sorted ASAP and have a similarly positive result as me. 👍
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