Non-Cirrhotic Portal Vein Thrombosis Neuropsychological Study

by Clint on August 12, 2013

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

 

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{ 2 comments… read them below or add one }

Heidi September 30, 2014 at 8:58 pm

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.

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Clint October 1, 2014 at 1:04 am

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

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