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Dealing with the after effects of abdominal blood clots

Posted , 5 users are following.

mark75883
mark75883

I just wondered if anyone else has had the severest form of Polycythemia?

Last December I had severe abdominal pain and ended up having 3 operations in 4 days to strip out two feet of my intestine due to a blood clot. I also had a blood clot in the Portal vein. After two & half weeks in an induced coma and a total of six weeks in hospital I'm making a very good recovery. Fortunately, I've not had any other side effects of PV.

I just wondered those who have had similar clots what are your experiences?

Regards

Mark

1 like, 15 replies

15 Replies

  • nandrews
    nandrews mark75883

    Posted

    Sorry to hear you have some tough breaks, but glad you are on the up now.

    For me my PRV led, 13 years ago, to me getting a clot in one of the major veins from one lobe of my liver. That resulted in a transplant. Which unfortunately then led to two more liver transplants, due to bile duct infection and liver rejection respectively. But since then for, me also, things are on the up and looking good.

    Nigel

    • mark75883
      mark75883 nandrews

      Posted

      Hi Nigel,

      With regards to your liver transplant was there any scarring? The reason I ask is that one doctor thought my scarring on my liver was that I'd been drinking too much, yet I've never been a heavy drinker.

      Lukily enough my liver is healing nicely although I still have portal hypertension.

      I get the impression that many haematologists don't fully understand MPD's and what the effects of them are on the body and organs.  

  • harrishill1
    harrishill1 mark75883

    Posted

    Hi mark. No haven't had that, but I don't know what meds you were on. My Hydroxyurea helps to prevent blood clots. One of the major worries with PV is the fact that we can easily develop blood clots. I pray I don't have that problem. Sorry you had this problem, and I sincerely hope

     you will forge ahead with only good things happening for you! Harrishill

    • mark75883
      mark75883 harrishill1

      Posted

      I'd had no indication of PV before my blood clots but since then I'm on Hydroxy as well as warfarin. I've still got the clot in my portal vein, but as was explained to me there are plenty of other veins to transport the blood to/from my liver so it shouldn't be a major problem. At first they thought I had Cirrhosis of the liver but a fibro scan has shown my liver is virtually normal!

      The biggest surprise is that I feel fit and healthy, as no nothing happened, apart from a foot long scar on my stomach. 

  • nandrews
    nandrews mark75883

    Posted

    Mark,

    I am surprised to hear that you still have the clot in your portal vein. My understanding is, that vein and the hepatic vein are the major drains of blood from the liver. So it would be surprising if other smaller veins can make up for the deficiency. But as you say you are doing OK so that is the most important thing.

    Nigel

    • mark75883
      mark75883 nandrews

      Posted

      As I've got portal hypertension my understanding from what I've been told is that the clot still remains.

      It would certainly be good news if it's gone though!

  • nandrews
    nandrews mark75883

    Posted

    I wonder if a clot can ever be secure enough to leave? I would have thought it could break lose or bits break off it and float around the system and cause problems in even more siginificant areas.

    I don't mean to worry you, but I would think it's worth asking some questions, if only to better understand the situation.

    Nigel

    • mark75883
      mark75883 nandrews

      Posted

      Hi Nigel, It's something I'll ask when I see the hematologist in a couple of weeks. 
  • nandrews
    nandrews mark75883

    Posted

    Well don't worry overly about it. I am sure our medics have our best interests at heart.

    Just today I received a planned call from my GP to discuss declining liver function. However my GP had to say it was a false alarm. Another GP (new), unaware of my condition, had flagged up my 'normal' readings as different from standard. In fact the readings have been pretty steady thoroughout.

    Nigel

  • nandrews
    nandrews mark75883

    Posted

    Mark,

    Thank-you. Did you mean on the liver that was removed or the one transplanted in?

    I didn't drink heavily pre transplant and don't at all now. As the transplant was needed because of a clot in one of the major veins I don't think scarring, if there was any present, would have been considered.

    Nigel

    • mark75883
      mark75883 nandrews

      Posted

      Hi Nigel, 

      I was referring to the liver that needed removing. 

      Mark

  • nandrews
    nandrews mark75883

    Posted

    Mark,

    OK, well as I said it was removed due to the blood clot. I guess they considered the overriding damage was due to that and wouldn't have invvestigated further.

    Nigel

  • Orseblue
    Orseblue mark75883

    Posted

    Hello, I have a lg portal vein blood clot, this is treated with warfarin. They doing regular blood testing but no scanning to see if it moved (dignosed 5 months ago). I have also got PV and doing my 2nd "blood dump" today.

    ​On top of it I will have a big operation to an unrelated thing in the near future.

    I feel okish, got headaches and massive night sweat (feels like my blood is in a kettle).

  • lijuan7002
    lijuan7002 mark75883

    Posted

    Hi You can view the latest med informaton about PV from Dr. Richard T. Silver research

    In his study, I think the PV is curable in the furture 

    And you can read the reference as follows:

    The 1st Annual Intemational Symposium on Myeloprolifertive Neoplasms(Saturday, Jan 9th, 2016)

    Best wishes and be well.

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