Non-Cirrhotic Portal Vein Thrombosis Neuropsychological Study

depressed-man-260x300Thanks to a fellow sufferer, friend, and subscriber to this blog I am posting a link for a study that was completed in 2006 on the neuropsychological affects on people with non-cirrhotic portal vein thrombosis.  Unfortunately my friend was diagnosed with PVT in his late teens and has had 2 major esophageal bleeds, however he like myself has survived many years since his original diagnosis.  He also is in his 50’s.  His condition is intensified by the fact he is now dealing with encephalopathy as his blood flow is bypassing his liver and causing ammonia levels to rise and in turn cause neuropsychological issues.  For the most part he is managing fairly well, with evenings being the worst part of the day for him.

The article is short (click link below), and technical from my point of view, but nonetheless may be helpful for the small percentage of us with non-cirrhotic portal vein thrombosis.  On a side note, I am fully aware that much of what I write and post on my blog can be overwhelming and depressing, however I want to encourage you that although the medical strides seem minute at best, I have come to realize that intervention, whether it be with medications or surgery (the greater factor being medications), seems to be prolonging the lives of many I am in touch with concerning this condition.  Remember … your questions, comments, or stories regarding your personal journey with portal hypertension (PVT), or that of your loved ones are always welcome.

Click link to view the article:  http://www.ncbi.nlm.nih.gov/m/pubmed/16557541/

Keep pressing on! 

Clint

 

4 thoughts on “Non-Cirrhotic Portal Vein Thrombosis Neuropsychological Study

  1. Heidi

    Hi. I am new to this and was just diagnosed with portal hypertension last Monday. Doctor said that cirrhosis is not a cause, however, I am a 30 year old with relatively good health. I know I’m at the beginning of my journey, but I feel lost. While possessing great insurance, I am now being passed from one doctor’s office to the next and told to expect appointments months away.

    Does anyone have any advice on how I start selecting my healthcare providers? I live in Southern California. What should I be expecting in my future?

    All the best.

    Reply
    1. Clint Post author

      Hello Heidi,

      I am sorry to learn of your situation. It can be scary or overwhelming for sure, and I have experienced those feelings many times over the years since my diagnosis.

      Like yourself, I also do not have cirrhosis as the cause, which makes it all the rarer. I have lived with the condition now for over 12 years now, and although I have had 3 major scares, I am still going! I started this blog on the advice of a friend to offer personal insight and experiences from my journey, and offer some hope for those going through the same. If you read through some of the information, I sincerely hope you can glean better insight and at the very least know that you are not alone! I recommend a Facebook page of which I am a member of also, called Portal Vein Thrombosis and Portal Hypertension in Children and Adults, started by a mom of a girl in Vancouver. Please check it out – you will be welcomed there for sure!

      The standard treatment for most people is blood thinners, and beta blockers. If you look through my blog and go to the Facebook page mentioned above you will learn of the commonalities for the treatments, keeping in mind that each of us is different and the protocol may vary slightly. Please let me know if I can answer any questions you may have as you begin to get your head around this. Above all, don’t despair, Although there is no cure at this point, they can successfully control the disease (I am proof) and one can live a relatively normal life. You will likely need to have a hematologist to oversee the blood thinner aspect, and you will also likely be referred to a Gastroenterologist.

      So please don’t despair, but check out the Facebook page, and ask all the questions you want. If not with me, then there will be others in our community who can offer good advice.

      Best,

      Clint

      Reply
  2. Aileen Holden

    Hi there,
    I stumbled onto this FB page today. I thought I would reach out.
    I am 37 years old living in Canada and was diagnosed with non cirrhotic portal vein thrombosis in 2017 (officially). I was told in 2002 that there is a blood clot near my liver but not to worry about it as it was old and faded. And that was it. So I continued living my life not really knowing any information and constantly wondering why they removed my spleen (it was inflamed but no reason why it happened)
    I had a few esophageal bleeds but was told I was ok to get pregnant. 4/5 months pregnant I have another bleed and find out how serious this illness is. My son and I made it through! In 2018 I had the TIPS completed (a stent in the liver) but then I suffered from a clot in the stent and they had to fix it. I am 1 year now with the TIPS and no clots! I have been on anticoagulants (Tinzaparin injections) which has helped prevent any clots. I’ve been through a few thrombobilia testing and have discovered I have AT3 (antithrombin deficiency) and will most likely be on a blood thinner for life.
    I wanted to share my story here as I am finding out how rare this is and possibly I could help someone or at least be able to communicate with others who have been down this road too.

    I feel hopeful to have reviewed some articles and have somewhere to go to feel not alone in all of this

    Thank you

    Reply
    1. Clint Post author

      Thank you Aileen! Appreciate your input. Sorry to hear of your journey, but at the same time glad you are doing well. I find this very helpful and I am sure others will as they read your personal story.

      Just after I was diagnosed I was told that I should have my spleen removed also, although it was not inflamed. Thankfully for me I told my hematologist about this and he said at the time, “no one is taking your spleen out – come see me”. My hematologist, who I am still under his care, worked out of the University of Alberta hospital, and subsequently I was referred to another gastroenterologist who agreed with him. I have seem the same Gastroenterologist now for many years, and she is in my opinion one of the best. Her sub specialty is Portal Hypertension and she took her training from Dr. Guadalupe Garcia-Tsao who practises at Yale Medical School in New Haven CT. Within the same year she took her training, she also trained in Barcelona Spain where there has been much research in the past on our condition.

      You mentioned Tinzaparin injections, and I must admit that is a new one on me. I was on Fragmin injections twice a day for 7 years so I can relate to the injections for sure. I am on Eliquis now and seem to be holding my own. AT3 deficiency is also new to me. I hope as people look for this reply they will find your personal journey and obtain some assurance that they are not alone in the journey.

      Best regards,

      Clint

      Reply

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