My Portal Hypertension Journey

This blog was created for those seemingly uncommon few (like myself) who are living with this often discouraging condition called portal hypertension. Through this “work in progress” I hope to encourage, inform, and provide a comprehensive forum for fellow sufferer’s, their family members, or their friends. In my personal quest to find others struggling through the side effects of this disease, I came to realize that there really wasn’t a one-stop site that provided all the things one might be looking for when dealing with a disease of this nature. All this being said, I want to extend a heartfelt welcome to you and most of all I trust you find information and solace from within. You are not alone in this journey!

Who are you?

My name is Clint Steenson, and my personal journey with Portal Hypertension began in the summer of 2002. Within months after starting a new business, the loss of my father, and 4 trips to the emergency ward of 2 local hospitals, I was shocked to learn that I had Portal Vein Thrombosis (PVT). After a week in the hospital I spent the next several weeks recuperating. Providentially for me, I was re-hired by my former employer, who I had worked for prior to starting my business to be their national sales representative. After a little over 2 year’s of employment and virtually no symptoms, I was re-admitted to the hospital in the early part of December of 2004 with severe pain and bleeding. It was then discovered that I had a clot to my superior mesenteric artery which explained the pain, and the bleeding at that time was from varices in my stomach. Again I spent another week in hospital, was released and took the next few week’s off work. I returned to my employment in January of 2005. After only 5 weeks back at work, I took ill again and was re-admitted to hospital with pulmonary embolisms (clots to both lungs).

As one may expect I take a boatload of medications which is necessary to stave off further clotting, and relieve pressure to areas in danger of bleeding due to the existing clots. It is suspected that my condition was started by an underlying genetic defect and at the time there were only 7 known defects, however all tests were returned negative. The most common and yet deadliest side effect to portal hypertension is a condition called esophageal varices. Varices are formed when arteries on the wall of the esophagus protrude inside because of pressure from the clot. Varices are graded on a scale of 1 to 3, with 3 being the most likely to bleed. Gastroentrologists can discover and grade the varices while doing a gastroscopy. In my case, my specialist discovered that I had 2 columns of grade 3 varices – grade 3 being the most deadliest. At the time of my last scope, it was determined that it was too dangerous to even check the condition and all future scopes were discontinued.

In October of 2007 my doctor’s strongly advised that I stop working as that would take much stress off my life. I heeded their recommendations, and fortunately was able to obtain long term disability benefits from my former employer, plus a government medical pension from which I understand is most difficult to get unless one has a condition such as I. As one may imagine my medications are very expensive so I am extremely grateful that the costs are covered by a plan, otherwise I do not know where I would have been without it? Of course there are the daily challenges of raising a family on a limited income, but I am still grateful for what has been provided and I carry on despite all this.

In summation, my life is filled with seemingly endless blood tests, iron infusions, doctor’s appointments, and all too frequent bathroom trips – not to mention some associated pain! Despite my condition I remain very optimistic and for the most part don’t dwell much on the negative aspects of this disease. I believe God has spared my life, and I have peace about the future. What is your story?

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{ 4 comments… read them below or add one }

Dominic Benson May 2, 2017 at 10:48 am

Hi Clint,
My daughter was diagnosed with PVT on 15 Feb 2017. The Doctors tell me this was secondary to appendicitis infection. My daughter was put on warfarin for 3-6 months with no other treatment. In April 2017 my daughter went for a scan and we are told the main portal vein is clear now . Also the left vein is clear , main portal and both right and left veins were clotted to begin with. The right vein is still blocked after 6 weeks on warfarin. I am told the liver and spleen are normal. My daughter has had no pain at all because of the clot but some small varices have appeared around the blocked right portal vein.Doctors advise me she may have a touch of PH but not severe because she’s got a good flow to her liver. Sometimes I am at a lost when talking to Doctors about this. Can you give me a run down on the situation, thanks Dom.


Linda January 18, 2018 at 10:59 pm

Hallo Clint,

I just found your Website and I’m looking very much forward to go through all the information you’re providing here. Thanks a lot for that! It’s very hard to find other patients with this diagnosis and places to share stories and questions.
I am from Germany and so far I couldn’t find something similar in German so it seems like I’m going to improve my English on this topic…

Well about me, I’m 21 years old and my portal vein thrombosis was discovered very early when I was only 5 years old coincidently.
I always had some problems with my digestion and when my parents went to a doctor to check out what’s wrong they found an unusual low amout of thromocyts and went on looking for reasons. I barely can remember this, my diagnosis just has always been a part of my life.

We went to a clinic specialized on liver diseases simply because at that age this was a very uncommon thing. Back then I was too young to intervene so they waited how I would develop living with it and only checked me once a year.
When I was 13 there was the possiblity of laying a shunt to bypass the thrombosis but my doctor recommended not to do it as I was a very healthy child. I did a lot of sports, was good at school and had almost no limitations resulting out of the PVT.
Since then I regularly need to controll my two oesophageal Varices grad 2 and 3 which never bleeded so far.
I have a quiet big milt causing some slighly painful pressure on my stomach sometimes but except this the only think affecting my life is my knowledge of a possible bleeding and and fear my condition might change one day.

I think my body learned to deal with the circumstances and I hope in a way which is going to work out for the rest of my life. We’ll see.

Best wishes



Clint January 22, 2018 at 6:07 am

Hello Linda,

Thank you for joining my blog. I am sorry to hear that at such a young age you are dealing with this condition. That being said, I have lived 16 years since my original diagnosis back in 2002. The treatment protocol seems to be similar the world over, but I know there are places and people who know nothing of this condition or how to treat it. I try to keep in the know about PH as much as I am able, so I do rely on others to tell their stories in hopes we all can benefit from what they have learned.

Keep your head up and please feel free share anytime.

Best wishes for a long an healthy life!



Isa January 26, 2018 at 5:21 pm

Hello Linda!

We are also in Germany and we have an 8-year-old kid with portal hypertension. Maybe you would like to write to us?

Best wishes


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