Size DOESN'T Matter....

[Chelle_]

So, saw my heam_oncologist (Portsmouth) yesterday, bloods looked stable which is good, although my bloods don't reflect what the scan shows. Anyway, he prodded and poked my tummy as normal after I mentioned that my last CT in London showed my spleen 28cm. He gave me the look 'yeh yeh we'll see' lol, so with cold hands he check my tummy over and with a surprised look said that my spleen wasn't 28cm and 'I think it might be bigger', he thinks most of my tummy is harbouring my spleen...lol and said he wasn't surprised I was uncomfortable.

So I asked how big until it needs to be removed, to which he replied 'yours is now too big to be removed' (even if that were an option) 'oh' came my response he followed on by telling me that whilst I am in a car driving or otherwise I should have a cushion as protection, that I need to reframe from any trauma (because going out and getting beaten up was my first thought) no play fighting with the kids, no exercise, falling over...etc...

My spleen is trying to battle my liver cirrhosis & blood cancer....so he said the sooner the transplant happens the better...

So while I try to protect me ticking time bomb, how are we all doing? tips? advice? :-\

[Millie09]

Hi chelle; wow 😯.well that was unexpected!! how did that all come about, had your spleen increased since the last scan , or was it misdiagnosed? .. i can well imagine how you are feeling

I do not have any ideas on what you should do apart from stop work, take very special care of yourself and pray the transplant happens very soon.

Im ok apart from two prolapse disc in my lower back .pressing on the nerves .so much pain and my mobility is not good .possible surgery 😏. Oh and my liver disease on top 😕.. hope you get the call soon hun xx

[Dldtx]

I had that same conversation about year ago but with an added growth growing inside the spleen. I was told it could burst on impact I shouldn’t drive or fall get hit etc.. I was advised that moving closer to the hospital would be marvelous idea. I thought if I have to move by the hospital it will be in south Austin Tx . So I did move and changed all doctors. The current liver specialist took me off all medications that where comfortable like my benzodiazepines, Hydroxyzine and all creams etc... except my HE medications and antacid next MRI showed unremarkable spleen go figure. Touch it still hurts so I don’t know if they know , I am getting closer to a transplant I think I signed a bunch of paperwork and the doc said we have time and who’s going to help me ? I was like wtf now, so just by changing liver specialist I lost all my comfortable drugs and my spleen looks better on a mri, so good luck, I think I may have traded up.

DLD 🤠 Tx