Two years ago I was diagnosed with a rare blood cancer called a Myeloproliferative neoplasm. It means that I produce two many blood cells (platelets) and as a result I got blood clots, one of which was in the Portal vein. Even though I sustained some liver damage which has now healed, I still have the clot and was eventually diagnosed with non-cirrhotic portal hypertension.
I just wondered if anyone on here has had portal vein and liver problems from unusual conditions. I'm writing about my experiences and wondered if anyone else has been in a similar situation.
Many thanks
Mark
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MarkD6701
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Hi Mark, I have, MPN-PV, JAK2+, portal vein thrombosis and Liver cirrhosis. I still have the clot in my portal vein. My liver problems however have resulted in me being on the transplant list. How are you feeling? Which hospital are you under Heam wise?
My liver problems were very confusing. At first they thought it was alcohol related as I had some scarring. But a fibro scan ruled that out. There seems to be little knowledge of MPNs and liver disease. I also has a clot in the mesenteric vein which meant I had to have part of my intestine removed.
Sorry to hear that you need a transplant. I had ascites but have not had problems since. Did the hospital say how your MPN caused liver problems?
They haven't said that there is a direct link, but from what they have said is I probably had the PV since I was born and at some point in early child hood have developed a blood clot that has then starved my liver of oxygen creating the cirrhosis. I am on diuretics daily for the ascities, if I am not on them I really suffer quite badly. I am also on Hydroxcarbamide, warfarin and propranolol.
You really seem to have suffered with clots! I was under the care of Guys when I was living in London, however moved to Portsmouth and am now under dual care of Portsmouth QA and Bournemouth.
I'm actually very well and everything seems to be back to normal. My platelet count is down to 106 though and I'm now on Hydroxycarbamide only four days a week to get my counts up slightly. I'm a bit nervous about getting colds etc. even though I've had the flu vaccine.
I had the two clots, and the one in the portal vein seems to be ok, even to the point that it might have dissolved a bit, relieving the pressure on the varices. However, as I've got an enlarged spleen I'm always wary about getting an injury in that area.
I was diagnosed with pre-fibrotic myelofibrosis, although I was told it's such a gray area the treatment is the same as PV, ET & MF.
So my platelets have finally started to stabilise they were very low down to 86 at one point. I am on 500mg Hydroxy Sunday through Friday and then 1000mg on Saturday. I have also had the flu jab, but it does only prevent flu and not colds, I am in fact at the tail end of a cold I picked up a couple of weeks ago. My spleen is 23.5cm so I am feeling very full, and I appreciate the weariness of injury in that area...I have grade 2 fibrosis which means the PV is on the turn but how long until it become MF I don't kow, although the doctors seem pretty confident it wont progress further.
That's excellent news about the clot being reduced, I'd like mine too, I have banding every 12-14 weeks to keep on top of it all.
I suffer with a lot of abdominal pains, shooting pains, burning feeling, I also bruise awfully and generally don't knock myself neither. I get very very tired, but fail to sleep a lot of the time and tend to get out of breath, but that will be because of organs pushing against my diaphragm, I also don't eat very well as I don't have a lot of pace left. Besides that, and if you notice from previous posts I am quite well, I work full time and try to pretend that none of this is happening to me. I am also a fan of positive attitude and having goals.
It's a bit of a rubbish journey we have all been set on but it's just something we have to deal with!
When you mention about grade 2 fibrosis, have you had further blood tests? I thought that unless your blood counts show some abnormal results no further tests are required.
I had similar issues with being out of breath, great discomfort etc, before I went to hospital. I think that was because of the problems with my intestines though. I've been ok ever since.
The one thing I find about MPN's is when I explain to other people it's cancer, but not cancer as they would understand in the normal way - makes us a bit special!
I've had three bone marrow biopsy's so far and booked in for a further in February. They are my least favourite thing!! they have just said on the report from the labs that they are grade 2 fibrosis apparently my heam said that there is 6 grades of something. I forget often about the blood cancer side of my illness because it doesn't cause me any problems. It's the liver I have issues with.
I tell people that it's like a family tree and you have Leukaemia at the top and then three rare cancers under it; MF, PV & ET and I have one of those. Makes it much simpler some times.
Mark, I am on something called the Majic trial, to see if I could get on the Ruxolitinib (excuse my spelling), unfortunately I had to stay on the Hydroxy after I already ended up in hospital because of the interferon. I have BMB's years because of the trial. Because of blood count issues and being on the liver transplant list I have been given access to the Rux, but am not allowed to stat on it just yet in case tx comes through.
I know most people get an initial BMB and then nothing more until something spikes on bloods. I wouldn't worry Mark.
I honestly don't give the PV a second thought anymore, it doesn't stop me from doing anything in my life really.....
However, It's almost two years to the day when things started to go wrong though. They'd found two blood clots, one in the Portal vein and the other in the Mesenteric vein, leading to my intestine. It meant part of it had died and had to be removed asap. I ended up on life support & in a medically induced coma for over two weeks due to the danger of an infected bowel.
I just got unlucky with the clots.
At the moment everything is back to normal, as though nothing happened
Hi Mark. I was diagnosed with PV (jak2+) 2 1/2 years ago. I have secondary budd chiari syndrome which sounds like a very similar situation to Chelle (who is an inspiration). On top of the hydroxicarbamide and the diuretics I take warfarin to avoid further clots (2 of 3 portal veins blocked on a venogram). I also take an antibiotic every day to prevent my ascites becoming infected as it caused sepsis before (very scary). To look at me most days, you wouldn't have a clue.. I feel tired and a bit breathless but as Chelle says.. I try to remain positive.. there's always someone worse off!! I just tell people I have cancer now... too hard to explain otherwise but the liver issue is def the more symptomatic of the two conditions. I wish you well. Chin up xx
I find this very intrestering , after diagnosis , as cirrhosis from alcohol, then borderline AIH , then they found I have severe Diverticular Disease, and lastly I appear to have been born with a congenital defect in my portal vein. My PV being abnormally narrow and meandering. I feel that all the dots have yet not been joined up in regard to these issues. In fact the issues with my portal vein appear to have been brushed under the table. However I have no signs of oesophagal varices whatsoever , a normal spleen , and a healthy platelet level. Although by way of my body compensating the area over my liver looks like a road map of high density housing with its numerous veins, they refer to this as cavernous. I am now pretty fit and healthy , partly down to good diet and exercise, some supplements, and they say I will live to make old bones. I have had issues with suspected blood clots in both arms and they think I may have been born without some of the valves in my veins which stop blood from flowing back. I think this whole area has a huge complexity , and one that their seems to be very little information about in general , and needs some serious research.
It does seem that many issues can cause portal hypertension and problems with the liver. Apparently, my clot was also linked to the mesenteric thrombosis which caused a big problem with my small intestine and subsequent bowel ischemia.
At times, it got a bit disheartening when they kept asking me how much I drank, especially when they didn't believe me at first. It was only after a number of blood tests that it was confirmed as JAK2 +. At least, with that diagnosis it rubber stamps what the problem is and there is no confusion.
As for cancer, like others have said, it's a different type of cancer and a bit complicated.
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