just an update...: Hi everyone, a few of... - British Liver Trust

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just an update...

jules45 profile image
8 Replies

Hi everyone, a few of you when I last posted said to update on my up and coming twice yearly doppler scan, the results of which have differed since my last one and I'm just a bit worried.  Had been keeping myself busy up until scan not really thinking about it until I got to the hospital.  The same radiologist was there who, even though they are not supposed to, does tell me roughly what he has found.  Spleen even more enlarged since last time and liver now an abnormal shape.  Must admit I'm a bit concerned but won't get the full report until hepatologist sees me in about 8 weeks unless I get a letter asking me to see him earlier.  Its the abnormal shape bit that got me worrying and why does my spleen keep getting bigger.  Has anyone got similar.  Apart from that I'm not too bad considering.  I hope you are all okay and thanks for reading

best wishes

julie x

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jules45 profile image
jules45
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8 Replies
SAMBS profile image
SAMBS

Hi Jules 45, hope someone from here can give you answers, I'd be interested re spleen enlargement because that happened to me a few years ago and it was never explained by my doc, just told I had it. That was a few months after I'd been put on Metformine for borderline Diabetes Type 2 and was already taking Levo for my Hypo Thyroiditis. I still think that's what's started my catalogue of events that finally led to Hep clinic saying I'd got (unspecified) cirrhosis! My Haemo said in 2014 I'd got portal hypotension which I'd not associated with liver, but could see it. thankfully that has visually disappeared since then! A lot I think was down to stop taking all the meds except Levo now! 

Hope you get your answers soon. Sambs x 

AyrshireK profile image
AyrshireK

Julie, an enlarged spleen is pretty normal with cirrhosis.  It is another symptom of portal hypertension - here's a page on HCV which details an enlarged spleen. hepatitiscnewdrugs.blogspot...

In summary it states - "Some patients with cirrhosis have enlarged livers and/or spleens.

The obstructed flow of blood through the portal vein (portal hypertension) causes the spleen to enlarge by causing an increase in pressure inside the vessels of the spleen. The spleen stores red and white blood cells and platelets (fragment of cells that are used to clot blood). An enlarged spleen traps platelets lowering levels in the blood which can lead to the inability of blood to clot. This is called Thrombocytopenia and is common in people with cirrhosis."

In my hubbies case his spleen was enlarged to 19cm at it's largest until they discovered the aneurysms in his splenic artery and the operation to sort those out killed his spleen.  His latest ultrasound showed that his spleen is now shrunked to less than 8cm

The unusual shape of your liver will be the cirrhosis also as the cells of the liver get squished and distorted out of shape and rather than being the large, smooth fleshy organ it should be it ends up its structure collapsing.  Hubbies consultant has told us that Stephen's liver resembles a shrivelled up raisin (obviously just bigger in size).

Your ultrasound has merely confirmed your cirrhosis and portal hypertension diagnosis which you already know you had and nothing to be too concerned about. 

Wishing you all the best, Katie xx

jules45 profile image
jules45 in reply to AyrshireK

Hi Katie, thanks.  Now you have explained the workings of the spleen and the fact I have portal hypertension you have put my mind at rest.  Also the cirrotic liver I have will explain abnormal shape.  When explained like you have I understand and not panic so many thanks.

julie xx

SAMBS profile image
SAMBS in reply to AyrshireK

Katie  hope you dont mind if I butt in on your reply to Jules and the link also. its been as helpful to me as to her! I was told last Dec by a Health Auth Dr th that I have thrombocytopenia, as soon as she started studying there and then, my blood test  results over several qtrly oeriods. it was lne of those "health of the nation" type appts. the tests I had on rdv b4 seing her  showed i had a severe urine infection also. another thing another thing about thrombopenia,   because of  blood  cells and compromised immune system is that we can pick up infections more easily.

Your  link gave a better explanation about the spleen than the one i'd looked at months ago, all my researching had led me to a conclusion of Thrombopenia being applicable to me, just a couple of weeks before I'd seen the H A Dr.   my spleen problem started several months after being put   on Metformine st same time i was alreadŷ on Levo.     An expat who had worked in NHS as a Therapist looked up the 2 meds and warned me they were not compatible and could affect my health. 

I hink you may have seen some of my posts on other forums Katie , because I recognise your name, so you are probably aware of other health issues I've had and have, including a swollen spleen which happened 2/3 yrs or more before my blood disorder diagnosed. but yes everyhing started with a TB infected gland removed from my neck when i was a baby, a few decades ago now :-)   

Now I just feel I'm on a merry-go-round, I cant get off it voluntarily, it will just stop suddenly one day and ill be flung off. thanks again for posting the link, ive saved it as a pdf. 

sorry for hijacking your post Jules. 

jules45 profile image
jules45 in reply to SAMBS

Hi Shirley, it's good that on this topic you found something relevant to you. That is what a discussion forum is all about xx

dckimberly profile image
dckimberly

Sorry, I just saw this. My spleen is twice the normal size. I was told it will always be this size. It has also effected my red cell counts and the need for transfusions since my transplant. It makes me look a bit lopsided since transplant..ugh. I hate it!

It's my understanding this is completely normal.

Good luck!

jules45 profile image
jules45 in reply to dckimberly

Hi, My top half looks strange also with a huge spleen. It cannot be disguised by clothing, tried all sorts of tops and baggy t shirts. Just sticks out. Just feel lousy about myself and wonder how I got here in the first place. My friend just wanted to do this but neither of us realised the medical minefield we were entering

Best wishes

Julie

dckimberly profile image
dckimberly

Nods, yes, I've had to change my wardrobe, a lot, but it can be done and you still look cute! After transplant you won't want anything binding on your belly for months, so you adjust!

My doc said there was no way to fix it. Sorry. Seems like it's just an insult on top of everything else! Lol

xxxxx

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