Trying to get to the bottom of my MPN (seemingly now unclassified). I had two clots in the Mesenteric vein and Portal vein leading to surgery. At first it seemed my liver had sustained quite a bit of damage - now disproved with a fibroscan. However as the liver had a little scarring they thought I'd been drinking too much, although I was never a heavy drinker and told the hospital as much. Nothing in my letters or notes indicated that they thought I had a drinking problem. However, today I received a letter from the haematology dept. with notes from my last visit. For the first time on the diagnosis it says "History of alcohol excess", yet this has never appeared in any previous letters. I just wondered if anyone else had been wrongly diagnosed with drinking too much if they had had any liver problems with a MPN.
I'm confused as to why it's the first time it's appeared on any notes as I was diagnosed with the MPN in January. I'm chasing up the hospital to find out the reason why.
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MarkD6701
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I have varices and elevated liver counts. They thought i had liver damage but i had a transjugular liver biopsy on my liver and it showed my liver was healthy.
I was asked numerous times if i had alcohol problems...i think the problem is that you end up getting looked at by different people, and those who deal with livers dont understand what an MPN is or can do.
The most common cause of liver problems and varices is alcohol. It is annoying when you get sceptical looks when you try and explain you dont have a drink problem.
I went to an MPN forum in Dublin and several people said they had been asked about excess drinking. These people were tee total had never had a drink. Just one of the many problems we have to face I'm afraid - enough to send you to the pub!!!!!!!
The practice nurse at my GP's surgery was extremely rude about my "drinking" and my denial of it - I'm tee-total. She obviously didn't believe me! However when I asked the doctor about it he said the blood results were because of the pain killers I take for arthritis.
I've had reports suggesting alcohol abuse too! I don't drink either. I wondered if they had got my son's results by mistake! - (only joking if he sees this!). My understanding is that the poison they feed us to help our blood is not greatly admired by the liver and it starts to play its face a bit. I've been told that they keep a regular eye on liver function results and not to worry too much unless they start to worry first! discuss it with your Haemo if you are worried.
When my varices where discovered i had to spend 4 days in hospital for tests etc. I was put on the 'liver' ward, and by that I mean the one with mainly people with alcohol issues.
Unlike other wards, the door is locked so they cant do a runner to the pub. I was able to leave to go get a coffee etc, but someone had to come with me to the door to make sure no one else slipped out.
It wasnt pleasant at all, i had my own rooms fortunately as i think they did realise i was there for a different reason, but you could hear allsorts going on, patients trying to leave or get out and being shouted at to get back in bed (this was the royal derby and if anyone saw the superhospital program, trust me that ward wasnt as friendly a place as it was made out to be).
Openly heard nurses discussing that they were going to open a bottle of wine when got home...dont think thats that appropriate really in eartshot of people with alcohol issues.
Hi, in the past before I was diagnosed with PV, I had about a year of liver function tests, was sent to consultants, tests, etc. I got really fed up of trying to convince the medics that I drank very little and now it's zero as it just doesn't agree with me. Liver tests seem ok now, fingers crossed. Hope you get it sorted out. Kind regards Aime x
I HAVE HAD 3 INFARCTIONS TO MY LIVER THEY WERE ALL IN THE VEIN LEADING TO THE LIVER IT KILLED PART OFF THE LIVER THAT WAS WHEN I WAS PUT ON HYDROXCARBAMIDE AND REFERRED TO GASTROINTESTINAL UNIT AND PUT ON DOMPERIDONE AS I WAS FEELING REALLY SICK LUCKILY THE LIVER REGENERATED ITS SELF BUT STILL ATTEND GASTROINTESTINAL
This sounds oh so familiar. I am also unclassified but for years, even though I have only been diagnosed with MPN 4 years I have been told I had a " fatty liver " probably been born with it one said. Strange how you accept things you are told as fact UNTIL you see paperwork that states heavy drinker. I am also teetotal and to try and convince them of that fact, you feel like they are looking at you and in their head they are going " yeah right ". I too was very angry, but I have learned now, that in the medical profession, GP's included, every single one will have a different opinion, so I don't stress so much now. If I were you Mark I would be asking to have that comment removed from your notes as in future it might compromise you with other things. ie: insurance, meds ect. .
Take care
Anne
Hi ! I am a bit late in responding to your post and probably can not add anymore to what others have said. I had a mesenteric /portal vein thrombosis in 2012 and it was as a exult of this my MPN (I have ET) got diagnosed, I was fortunate as tests confirmed no damage to my liver. I had a very swollen spleen at that point and ascites ( fluid build up) and high CT level in my blood, which I think are symptoms of liver issues as well as cancer. However initially when in hospital ( I had 2 admissions via A &E) and at first follow ups, they kept asking me how much I drank and if I had alcohol problems. I did enjoy a glass or two but was horrified at what seemed to be suggestions I had alcohol problems. It does seem to be a common theme.
As well as the thrombosis ( I am told quite a rare one) and the MPN ( also rare) I have another uncommon problem called hollow visceral myopathy, doctors were quite interested in me. I got written up for a medical journal! and I got referred to the right people and they understood my conditions more or were willing to look into it all more. The questions about alcohol then stopped. I do also have some minor varices in my oesophogus.
Sorry for the long post But I think I understand some of what you must have experienced. I would speak to the hospital and ask them to remove it from your notes as Anne suggested above. It is wrong for them to record something erroneous that could affect you, seems to me they have recorded their suppositions. Take Care Liz x
Hi Liz, with your mesenteric thrombosis did you have any complications regarding your intestines? I ended up having a number of operations as part of it had to be removed. I also have an enlarged spleen and minor varices as well.
Hii, no I was very very lucky no operations and no damage to intestines. I took Clexane for 6 months for the clot and on hydroxy and aspirin for the ET, amongst the other meds I take.
My spleen size returned to normal after some time and medication sorted and controls the fluid build up (ascites) I had.
Sounds like you had a very rough time of iit. I hope you are recovering from all the surgery. I am glad you found this site. It provided me, and continues to do so, with a lot of support and information. I think it helps to know you are not alone and there are others who understand some of what you have/are going through too.
Let us know how you get on with the hospital. I hope you get to the bottom of what MPN you have. Take care Lizx
Hi Liz, I too got ascites and was taking Spironolactone. As my liver seems to be working well I've come off that. My weight went up slightly due to the water retention but has now stabilized. One of my diagnoses is Non-Cirrhotic Portal Hypertension.
In the last couple of days I got a letter (for insurance purposes) stating I've got PV as it was the nearest one they could identify with. They said at the hospital that even under a microscope it can be difficult to tell which is which.
At least the bit about heavy drinking got dropped as well on the diagnoses.
As you say, this site is great for speaking to people with similar issues.
Hi I’ve had a splenectomy after enlarged liver and spleen my liver left fatty persistent abnormal liver function tests raised ALP & ALT but I worked with chemicals have you a background of this ?
I have never drunk a lot and I have been diagnosed with enlarged and scared liver and spleen and have been told to stop drinking how can I stop something I don’t do
I had no response from this apart from a shrug of the shoulders
I am confused as to what I have with no help from Doctors
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