Enlarged spleen

[angse]

Hi not getting a lot from doctors as usual, but would anyone know why my spleen enlarged and what it means for me healthwise , liver also enlarged, I do have cirrohiss, feeling very run down at the moment, was feeling very well until recently, but I suppose that is to be expected, I know my platelets have gone down again, and I am wondering is this way I feel so run down, not seeing heptologist until end of August, no point asking my gp he just dosent know, any advice would be appreciated thank you all Angse

[carmik]

Hi

I don't know where you are at with Hepatologist. but when my husband had all of those problems plus ascites and Encephalopathy he was on the transplant list.

Which hospital are you attending and how often? Is it a transplant unit? If not you need to ask for a referral.

Good Luck

[Hidden]

Hi Angse. I can't answer your specific questions but think it would be good for you to change your GP as s/he clearly is not meeting your needs. All this requires is that you find a new surgery and complete a form - you don't have to offer any explanations. As part of the process, you will get an appointment with the practice nurse and then the GP at the new practice. Check with friends, neighbours etc as to who has a good reputation locally.

[jenniwren]

I have an enlarged spleen too- one of the reasons is that when there are problems with the liver, the spleen starts to taken on some of its work. It also 'collects' platelets which means that you do have them, they are just not in your bloodstream... I'm not entirely sure why all this happens so I would suggest speaking to a consultant/ specialist to get more info. In terms of transplant, my liver and spleen have been like this for more than 8 years and I'm still very much well enough not to be considered for the list just yet. I know it will be on the cards at some point but as reassurance, the body can cope like this as long as you listen to it and look after it.

Hope thus helps- feel free to message me if you have any more questions

Jenni xx

[gamesmaker]

Hi again Angse. I also have an enlarged spleen. They comment on it when I see the team at Kings, but more or less just in passing ("your spleen is still enlarged" ) - mine has stayed enlarged but the same measurement more or less for a year or so now. I must admit that because I had just lost my husband a few days before, I was not quite 'on the ball' with questioning things when I was seen very recently. However, I am still waiting for my copy of the GP letter to arrive from Kings, and that should have the full ultrasound report in it - so that might tell me more. It always seems to need me to chase the letter up - my appointment was a month ago!

[judyt]

I saw my Hepatologist today to talk about some little things which were bothering me. I had been told when the Cirrhosis was first discovered in March 2012 that I had Portal Hypertension, and this had come up again recently when being seen by a Colorectal Surgeon. When I mentioned this to her today she explained to me that although the original CT scan showed Portal Hypertension, in fact I am not showing that now. She said that what they look for is an enlarged spleen and absence of platelets and I am OK in both those measures at the moment. On that basis it would seem that you really do need better advice either from your GP or get yourself to another Hospital appointment. I live in New Zealand where the system is similar to the National Health and up until now I have been paying to see this Hepatologist but as of today I have decided to transfer to the hospital system because she has assured me that I am so stable. I am 70 years old now and have had undiagnosed PBC at least since 2002 until 2012 so it would seem that I will be still jogging along in 10 years time so I might as well save my money. I will see the same Doctor most of the time so what is the point in paying.

[Tatjana]

Hi Angse

Do not worry about having an enlarged spleen. I have an enlarged spleen and enlarged liver. I do not have cirrhosis but do have fibrosis. Like gamekeeper I am at King's. I do not think that it matters about who your GP is as long as he does the right thing like do blood tests when you ask. Also refers you to hospital as needed. I do not think a lot of GPS understand this but, as long as you have access to your Heptologist. Just phone the hospital appointments or the Heptologist secretary and ask for an earlier appointment. I always do if I deem it necessary and I get it always. I feel run down at thee moment and have no idea why but I will phone my GP today and get an appointment and take it from there. Best wishes.

[angse]

Thanks to you all for all advice given, and am taking everything said seriously, I have never asked to see my heptologist early or when I have concerns Wii definatley contact know when I need to, I have a gastro doctor which I see in my home area of Kent, and I have heptologist at kings college in London, I got to them as on having one endoscopy last year the doctor said I should be under liver unit at kings, I have been there 1 year ultrasounds, blood work and consultations with doctor, now my gastro doc in Kent in is saying there is no point in me going back and forth two 2 hospitals, when he can perfectly take care of me himself, he has asked me to tell heptologist next month when I've got appt: there to say that I Wii have all my care in Kent, I am now in a dilemma over this, as kings is transplant unit, I really will have to think about this one, am going on a bit sorry, but cannot understand why he wants me to give up kings. Angse

[Sheana in reply to angse]

Do not move from Kings. It is the top liver place in England. Re tiredness if you are anaemic you can try Maltofer tablets which are iron tablets hat are very easy to absorb.

[Sheana in reply to angse]

Do not move from Kings. It is the top liver place in England. Re tiredness if you are anaemic you can try Maltofer tablets which are iron tablets hat are very easy to absorb.

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[Tatjana in reply to angse]

Angse DO NOT move from Kings. I am speaking from experience. I had, still have a Hepatologist Gastroenterologist in a different hospital and I also attend Kings. It was my gastro doc who referred me to Kings because he could not deal with my liver problem. You are lucky to have Kings. They are the best. I had a serious liver op at Kings and I feel so lucky to have been transferred there. That is thanks to my Hepatologist Gastro who still looks after me with the knowledge of Kings. I cannot understand why your gastro doc wants you to do this.

You could, of course get a referral from your GP to a Heptologist Gastro doc at Kings. Hope this helps.

[angse]

Thanks for replies re-kings, yes I did have doubts no longer though, I will stay at kings, that's were I feel safe anyway, I know for a fact that I f I had medical emergency, my survival would be very doubtful at Medway maritime Hosp:, I had life threatening emergency last year, I was not at home so ended up in Canterbury hospital due to massive GI bleed and they saved my life there, would not have been so lucky at Medway, so thanks you certainly have helped me make up my mind, I thank god for all on this site, Angse

[gamesmaker]

do not move from Kings - it is the best place for treatment!!!

[cityman62]

Hi Angse,just passing on what my G.P. told me,(my spleen is also enlarged),as far as I understood her,there's a large input vein/artery? from the spleen into the liver.When the liver begins to struggle,it can no longer cope with this input,and the spleen and vein start swelling. The danger or concern is that if the vein,Artery bursts its a really hard place to access and stop the bleeding,which is then a pretty serious issue.This is just what I've been told,so I hope its helpful.

[AyrshireK in reply to cityman62]

At my husband's recent assessment for transplant they discovered during the CT scan that he had numerous aneurysms (bulges) in his splenic artery, his spleen has been enlarged at 17cm in every ultrasound scan since diagnosis and he has portal hypertension with varices (he's had 42 banded to date). Once discovered docs wanted to act as quickly as possible to block the bulging arteries to prevent a burst and they would not activate his listing for transplant until they were dealt with so he had an embolization operation on 25th June which has led to some splenic infarction (dead areas of spleen due to oxygen/blood starvation). This same procedure will also sometimes be done for a dangerously enlarged spleen (hypersplenism) where they will basically cut some of the blood supply to the spleen to reduce it's capacity.

He had another CT scan a couple of weeks ago to see how things were shaping up and we go to the transplant clinic this coming Tuesday so should see how things are going then.

Doctors/Surgeons were surprised to find these aneurysms but said they needed dealt with urgently to prevent a possible catastrophic burst - also could not transplant with them as they were due to risk of massive bleed. Seemingly these do give off warning signs (upper left quadrant throbbing pain, pain in left shoulder) but hubby hadn't noticed that (until after the procedure when he's been in some pain). They normally only get discovered after a burst or during a scan for something else. Just glad they did find them and deal with them.

Katie

[AyrshireK in reply to AyrshireK]

We have been back at Edinburgh this week and following hubby's embolization operation on his splenic artery aneurysms it turns out there has been a complete blocking off of the artery resulting in very little blood supply reaching his spleen and the CT scan taken on 9th July has shown that his spleen has almost completely died off (an almost total splenic infarction) - therefore he no longer has an enlarged spleen infact he no longer has a viable spleen at all and has now been placed onto Penicillin for life as he now has to be treated as though he has no spleen. This lack of a spleen has now had a positive effect on his bloods, his INR has gone to 1.0 and his platelets have risen from only 20 to 259.

[Hidden in reply to AyrshireK]

Hypersplenism is not a dangerously enlarged spleen. A dangerously enlarged spleen is referred to as massive splenomegly. Splenomegaly and hypersplenism are not the same thing. Tho they can coexist. Hypersplenism can happen even in people with a normal size spleen