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?
Connect with Clint
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Hello Clint,
How are you feeling today? May I ask you why you doctor does not consider DSRS? It has less complications. I know that in Saint-Petersburg after such surgeries women with portal hypertensia can even give birth. http://www.surgery.by/details.php?PHPSESSID=052a495ab7caba23003ba0f5a05b0585&lang=en&year=2009&issue=3&number=5 this is a link to his publication. His name is Bogdan Kotiv.
Hi Alisa,
I have been feeling the greatest the past few days, but sometimes my life is like that. I’ve have had some mild bleeding(I will spare you the details right now), and discomfort but hopefully things will turn around soon?
My doctor’s ruled out any kind of evasive surgery a few year’s ago as they are concerned about pulling me off my blood thinners in order to operate. I currently take 2 injections per day of Fragmin (12,500iu) to stave off any further clotting. In 2005 I had clot’s to both of my lungs and prior to that of course I developed a clot to my portal vein and also the mesenteric artery. Underneath all of this is a clotting condition that caused the problems in the first place. Doctor’s considered all options including DSRS and also even considered a rare cluster transplant to aleviate the danger of a bleed from the varices. It was decided amongst a panel of 5 doctors to not operate on me as it would compromise my life due to the fact I am doing relatively well today – even at the ripe old age of 50! I have been fortunate enough to not have a major bleed, otherwise with the thinners I am on it might not be a positive event! God is good! I was told lately that the younger the patient the best chance they have to improve with any kind of surgery. The medicine protocol for treatment is pretty much throughout the world as I am learning, so I guess surgery depends on whether or not the patient has a bleed in the first place? Thanks again for your contribution to this blog. Highest regards, Clint
Thank you Clint for explanations. I will pray for you to get better, and ask God to help you. Olesya.
Appreciate this immensely! God bless you also!
I Clint,
thank you for sharing your story…6 months ago my doctor told me
I had portal hypertension with oesophagial varices. It was scary
but I am learning to deal with that. Tomorrow I will have a banding
of these varices. Hope everything get better.
Finding someone who deal the samething can help to cool off.
Thanks…God bless
Ann 🙂
Thank you for sharing Ann. Prays on your behalf especially tomorrow and on into the future! Keep us posted if you will. Blessings, Clint
Hello Clint,
Thank you for sharing your story I had never heard Of PVT Before but my 4 year old son was recently diagnosed with portal hypertension caused by portal vein thrombosis. He is a normal happy 4 year old born with Optic nerve Hypoplasia (poor formation of the optic nerves) Jake is blind in his left eye but has good vision in his right so this condition does not really effect him but it is congenital. Investigations into his ONH showed him to have an enlarged spleen and blood tests showed low platelets and red and white blood cells we went on a year long journey of tests to rule out blood cancers. He Has recently spent a week in a childrens hospital which has a specialist Liver centre. They preformed an endoscopy which showed him to have grade 3 escophageal varices one was banded he had other varices in his stomach and bottom but they did not band them they put them at a grade 2. I am waiting for results from an MRI he had done of his liver where they enjected dye into his vein. Its believed Jakes PVT is caused by a congenital malformation of his potal vein. The ultr sound scan showed his portal vein was positioned different to normal. They have not linked the 2 seperate congenital conditions Jake has but both the optic nerves in your eyes and the portal vein system develope in the 1st 8 – 10 weeks of pregnancy. I feel they must be conected because what are the odds or getting 2 rare congenital conditions. He has never had a bleed and the thought of that happening really scares me. They have but him on medication to stop the build up of acid in his tummy. They also said his stomach lining was inflamed. Do you have this? I didnt ask if it was connected. Thank you for your story Im sorry to ramble on I think Im still a little shocked!
Kerry Hughes (UK)
Thanks for your story Kerry – great to hear another one from the UK! Please know you are not alone out there and there are, others who have and are walking this same journey with their little ones. All of the side effects mentioned seem to be common amongst most PH sufferers, including myself, except for the cause (congenital malformation of his portal vein). My condition was thought to be caused from a rare genetic clotting disorder of which doctor’s have never pinpointed to date! I have grade 3 varices but have never had a bleed, but there are others I know of who have had bleeds and pulled through. Banding is a common procedure it seems, and at one point doctor’s were performing scleropathy on patients to prevent bleeding, but this does not seem to be the case nowadays. I too am on a medication(Pantoloc) to prevent stomach acid from wearing away the varices – so again this is another common medication. One question I have though, do they have him on Nadalol to lower his blood pressure, or is that an issue? Nadolol is commonly used to bring the blood pressure down in the varices so that they will not rupture under pressure. From what I have learned from my own doctors and others who have this condition, is that it is standard protocol around the world to put patients on this in order to prevent a bleed. Now in the case of your son, I can’t speak to that, but you would need to ask you doctor. As always my heart goes out to all you parents of these precious little ones. Keep asking questions, check back here often – we are here for you and in my case I am thinking and praying for all of you! Clint
Hello Clint
Many thanks for your response it really is a comfort to spk to someone with experience of this condition. Your Website is really good and very informative. He is not on any Meds to lower blood pressure but we are Due back to Hospital in 6 weeks so I shall ask what the plan is. He is on 2 lots of medication one is to reduce stomach acid ( Renitidene) The other (Antepsin Sucralfate) which is for his inflamed stomach lining. Im sorry to hear that they cannot pinpoint your rare clotting dissorder because In Jakes case I felt better to know exactly what was wrong. I wish you good luck and health for the future and find it pretty amazing that even though you are sick you are finding time to inform and comfort others.
Take care
Kerry
Hi Clint, thank you for this valuable website. I am hoping you can put me in contact with those who have had the Rex shunt procedure done by Dr. Superina. I see his name so much and we are very close to Chicago so we have also been to see him also. I would very much like to talk with others who have been to him and have had the shunt surgery. Please feel free to give my email to anyone who I may contact.
Thank you
Hi Kelly,
Appreciate your feedback on this blog. Regarding someone in the Chicago area, I am going to refer you to Shelly Hart whose daughter Aubree had the Rex Shunt procedure performed by Dr. Superina a number of year’s ago. You can access Shelly’s Blog by clicking here: http://www.hartgirlies.blogspot.com/ or you can also contact her through her email –
hartgirlies@yahoo.com By far the most response I have had on this blog to date has been inquiries and “hits” for the Rex Shunt Procedure. If you need more contact emails please let me know and I will be only too happy to oblige. I will let you initiate this contact but if you are unsucessful I can forward your email address directly.
Take care, Clint
Thank you very much for the information and again thank you for this website!