Hi. I’ve had an enlarged spleen for about 10 yrs now due to portal hypertension. I was wondering if anyone who was diagnosed with Splenomegaly, noticed a reduction in size post liver transplant. Mine measures around 22 cm and pushes my liver to an odd angle. It feels uncomfortable when I’ve eaten as it takes up so much space. I’m trying to gain weight but I’m finding it uncomfortable.
I know this is probably not an issue, but I’d just like to know if anyone else has experienced similar.
Olivia
Hi Olivia,
I can't tell you what happens post transplant as I am still waiting on my call. My spleen is the size of my tummy, about 28cm last checks, it's now at a dangerous size apparently, I also have ascites despite being on diuretics. I have pain all the time now and my back aches. I hope it'll get smaller once the tx is done. I have portal hypertension due to portal thrombosis. I also have blood cancer that makes my blood sticky and clot easily. I am on a mission to get some comfortable trousers I think in the form of maternity ones this week. I have also been asked by my doctor to drive with a cushion (I do A LOT of driving) as a protection method....and to avoid any trauma.
I think the best things to eat are those high in calories, Speak to you dietician.
I hope things get easier for you soon!
How do you manage to still drive?!
I assume that it gets smaller because the reduction in pressure in the portal vein.
Can’t wait for my new lease of life! How long have you been on the list for?
Olivia
I still work full time Olivia, if I didn’t I’d go insane. I’ve been listed now for 16 months I am with kings. What about yourself? X
I’m having mine at QE Birmingham. Listed for 3.5 months. Are u the same blood type as me (o neg)? Oh I really hope you get the call soon.
I had to drop my hours down to part time as I was too exhausted. You are right tho, working keeps me focused on other things and distracted.
Olivia
I’d quite happily drop to part time but I just don’t think there is an option to do it. Yes I’m ‘O’ too. I always thought my call would have come before now but it’s not to have been. There’s been nothing so far. I hope you don’t wait too long x
Hi Olivia
The spleen should go back to its normal size post transplant, mine did.
How you get your call soon.
Klodian
Thank you!
I’m on fortisip with added protein and seen by my dietician quite regularly.
Only been waiting 3.5 months so not long. Blood type o - so may take a while.
Olivia
Is that the blood type with an estimated waiting time of 18 months? Even if it is, an estimate is just that. The average waiting times for my blood type A+ were 4-6 months but I had my transplant within 5 weeks and 4 calls altogether during that time.
Good luck!
How long after transplant did it go down? And did it come down to normal size?
Got questions. Can’t get any answers any place. Had ct with contrast in emergency room 5 years ago because I was so stressed out I had a lot of blood in stool. They did ct scan said liver appears normal. Would they see if I had cirrhosis on ct scan.
Yes, a CT scan would definitely have highlighted if your liver was cirrhotic.
My health at the moment I guess is other than this constant worrying. It seems like when I worry. Every little thing I think is a symptom. Because I start reading stuff on internet. Like I said when I went to emergency room I told them what I have had in the past Which was hep c in 2008 took treatment for 1 year and cured. So they did ct with contrast said liver and spleen are normal. Had been checked since virus still gone today. And when I first found out. Doctor did 2 ct with contrast. And 1 ultra sound he said liver appears normal. Then I sit and read stuff on internet that people say portal hypertension causes off and on leg swelling and albumin will not be low. Do not have the insurance to go back to the specialist that treated me. I just think if this was a symptom of bad liver this last ct with contrast would have saw something.
Ahhh 18 months?! Where did you hear that from? I hope it’s not that long. You are lucky to have that blood type.
How long has it been since your transplant?
Olivia
Hi Olivia, I have a fairly rare blood type B- , I was told up to 2 years hopefully but my call came 10 weeks later and everything went like clockwork seemed very surreal at the time and also I’m sure my spleen, which was very enlarged, has gone back down after transplant, good luck with everything and I hope you don’t have to wait long 🌸🌸
Thank you so much. Technically I’ve been waiting a while as I’ve been on the list before but taken off in 2015. My liver improved and was ok for a year apart from a few bleeds and infections.
I can’t wait to have the transplant.
I’m writing a blog about it all
I had my transplant at King's exactly 14 months ago today. Sorry didn't mean to alarm you, perhaps it was a different blood group that had the really long average waiting time.
I hope you get your new lease of life soon. To me it has made an unbelievable difference. I'd say I'm back at 85-90% of my old heathy self now.
I have read your blog, what a journey you have been on, but what an inspiring young lady you are, here’s hoping you get your call soon and we can read all about it in your blog, 🌸🌸
Thank you so much lovely. 😘 xx
How are you coping with the drinks I too was on them and it was one thing I was so glad to see gone after transplant I hated them but like yourself I was very slight build and was constantly trying to keep my weight up before transplant now I’m spending all my energy trying to keep my weight down, funny old world eh xx
I’m not enjoying them tbh but do my best. If I don’t maintain my weight, I’ll be taken off the list until I’m fit enough. I’ve been using them in smoothies, as milk replacement and freezing them into ice lollies.
I’m yet to try the recipes they have on their website.
I guess the good thing for you is that you are not having to drink them anymore. 
Olivia
I don't have any knowledge of whether or not it will go down with liver transplant, but suspect it may. My husband has Nodular Regenerative Hyperplasia of the liver, which caused his Splenomegaly (and subsequently, portal hypertension). He ended up getting a side-by-side renal shunt that relieved his splenomegaly, as well as varices in his esophagus and stomach - and probably beyond. His "belly bulge" (spleen) is now not noticeable to the eye. But because it had been stretched for so long, it's still englarged slightly; nothing like it was. Not sure if that helps, but I suspect a liver transplant would provide an amount of relief, as it would cause better flow, depending on why your liver is blocking. HTH.
Thank you.
That does make me feel more relieved knowing that.
Its great having suppport from those in the same position.
Thanks all!
Olivia xxx
Olivia, I understand you have back pain, could you describe that pain. My father in law is waiting for some blood work but before getting the bloodwork done he has been complaining about a deep muscle pain in his middle back and upper shoulder. He feels that his spleen is enlarged because when he took a breath he feels pain. His doctor did not feel the spleen during examining but after the lab work comes back he will be having further testing.
I’m not sure if I experience any back pain due to my spleen. My posture isn’t as good as it could be though. I’m a nurse so it’s normal for my back to hurt after a long shift I guess.
I hope your father in law gets the results you hope for. Sometimes it’s best to receive a diagnosis in order to act upon it in the correct way.
Wishing you luck.
Olivia. Xx
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