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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Hi Clint,
I hope everyone is doing as well as can be expected. I would like to share some information with Kerry Hughes (UK). In 2003, after a March vacation in Cuba, I was diagnosed with optic neuritis which is an inflammation of the optic nerve. This condition often is a precursor to multiple sclerosis so I had an MRI and saw two neurologists to rule that out. I was told I did not have MS and that the optic neuritis would clear up in 4 to 6 months, which it did. In September 2008 I was diagnosed with Portal Vein Thrombosis (see previous posts) and never thought there was a connection between the two conditions. I have an appointment with my doctor next week and will ask her if these two conditions could be linked. I will pass on any new information I get. Like many others on this sight, the cause of my PVT has not been pinpointed. My heart goes out to Kerry and her son and family. I again thank you for this wonderful website which has helped me to cope with this condition over the last year. I am feeling very well and am scheduled for an endoscopy and colonoscopy to check for esophageal varices (one year follow up) and pray that new ones have not developed.
Take care,
Audra
Audra,
Thanks again for another post on this site … I see you just entered it within the hour and it is still early here for me (4:40 am). I could not sleep as I am dealing with the usual pain that keeps me up! I had a nasty bout of the flu on the weekend, and I was feeling somewhat better yesterday, but it seems that was short-lived!
Anyways … I am anxious to hear what the results of your tests show, and YES pray that nothing new has developed for you. Also am curious to hear what your doctor says about the possible link between optic neuritis and PH? PH really is a curious condition and I guess if I pursued the root cause of how mine developed – I still would not know either! So we are in the same boat! When I saw my specialist last October, she even checked back in my records to see if there was an actual cause (ie.protein deficiency). I see her tomorrow for a follow-up appointment as she will be seeing how my blood pressure is holding up under the Nadalol and at that point she may increase the dosage? She also ordered a Echocardiogram which my family doctor said there are some abnormalities. The right side of my heart is, according to the test results “severely dialated” meaning it has become enlarged (by how much I do not know). The valve in the chamber is staying open longer than it needs to be and blood is leaking back down into the bottom chamber. I am not trying to scare anyone reading this anymore than they may likely be, but portal hypertension can cause pulmonary hypertension and in medical terms it is referred to as “portopulmonary hypertension”. At some point I am hoping to shed more light on this subject as it is yet another side effect of portal hypertension.
Well, you take care my friend. As I said before I will be praying for you, and the many others who find themselves on this often lonely journey into the realms of the disturbing condition we find ourselves in. Now … if you will allow me to be so bold I am posting a link to a video that was sent to me yesterday by a long time friend in Ottawa. It has particular meaning for me as I can relate to what is being sung and the string quartet playing in the background is phenomenal. I was encouraged as I often am when I listen to music like this – I hope you enjoy it: http://www.youtube.com/watch?v=dGfqt2uTxIM
Hi Clint,
Thanks for the links. They are very uplifting.
Audra
Hello
I would like to thank Audra for sharing about your Optic Neuritis and PVT, Im very interested to know what your Doctor thought was there a link? Jake was born with optic nerve Hypoplasia when the optic nerve doesnt develope fully and is smaller than should be his PH was only diagnosed recently but the malformation of his portal vein is also something he has been born with. Your the closest I ve found to anyone linking the optic nerves with the portal vein I will tell Jakes Doctor about your experience aswell. Im really hoping no new esophageal varices have developed for you Audra wishing everyone on the site good health for the future
Kerry
Okay this may sound stupid but I have a friend that has a rex shunt and she is 4months pregnant and the doctors have started doing test as of 4/28/11. and they are worried about her why are they so worried about her and the baby she has not gained any weight from the pregnancy but the baby is moving and active so that is good right? I just wanted some more info on why they was worried thanks for helping me
Thanks for your post. The Rex Shunt procedure is relatively a newer procedure so I am guessing your friend must be quite young. I am sorry to hear doctor’s are concerned for her, but I am not sure why unless there is other complications? The procedure is normally performed on children under the age of 5 according to what I have learned recently, and if it is successful I have only heard of a few who have had complications after it was done. I can only speculate at this point why they may be worried about the shunt or again what other complications she may have to make them think this way? Our best hope may be that someone else will see this post and share some additional insight. If you find out anything else relavant to her condition – please feel free to post again! Take care!
Hi
Just a short post to touch base with everyone. The results of my one year follow up endoscopy and colonoscopy were very positive. I had one new esophageal varice and a very small residual one banded on May 2nd. My colonscopy was clear and does not have to be repeated for 10 years. In 6 months I am to have a repeat endoscopy to check for any new varices that may develop. I am feeling very well and am becoming more physically active and have gradually got more adventurous with my travels. I recently returned from trips to Seattle and Palm Desert and am scheduled to go New Orleans at the end of May with my husband.
I would like to know if anyone has any information on a new anticoagulant drug my doctor is hoping to put me on to replace Warfarin. The drug is Pradaxa and it does not require the frequent monitoring of my INR. It is about to be approved in Canada for other uses besides atrial fibrilation (sp), but I believe it has been used in the UK and possibly the US for a few years for a variety of conditions including PVT. Also, I have run across websites that mention Sorafenib that is still in the experimental stages. I believe it is used to help repair vascular damage. The website clevland clinic. org has an interesting article about it. Lastly, I asked my doctor if my Optic Neuritis and PVT could be connected. She did not think so because my PVT was a structural problem and optic neuritis is an autoimmune condition. However, she is a GP and might not have expertise in these areas so I would take this info with a grain of salt.
Clint, I hope you are doing well and that your heart problems work themselves out. I again thank you for this wonderful website. All the best to everyone.
Take Care,
Audra
Hello again,
I just realized that you have an entire article on this website about Sorafenib. It quotes the same research I read. You are always a step ahead. Thanks again, Audra
Hi Clint,
first of all, thank you very much for your website. It’s a huge help for everyone with PVT and portal hypertension.
I’m a med student from Poland and my fourteen-year-old sister is suffering from PVT, portal hypertension and splenomegaly.
Shortly after birth she was admitted to hospital because of sepsis (blood poisoning). Thankfully, the doctors managed to save her life and until she was five there were no further problems. In 2002 routine tests showed low haemoglobin and platelets. During summer holiday she caught some unidentified kind of infection. After that, when she went to kindergarten, she had a few incidents of fever and non-specific symptoms. Her spleen enlargement was diagnosed then.
When she was six, she had a severe bleeding from her gastrointestinal tract. She had esophageal varices diagnosed then. For the last few years she’s had them banded for three times.
Her organism has produced a natural shunt, so her liver is in good condition. Because of her weak immune system she falls ill very often, misses a lot of school and has to avoid crowded places like shopping centres. She can’t attend PE lessons because of the spleen and feels “worse” than her friends because of that.
Now she doesn’t have esophageal varices (thank God), but her spleen is 22 cm and her platelets and white blood cells are very low (PLT 60 thousand, WBC 3 thousand). The doctor performing gastroscopy said there are possibly varices under the cardia, but he is “not sure”. I just love his accuracy.
I have a question to you all – can you travel by plane with your diseases? Last year, when there were no varices, we flew on holiday for the first time, but we’re still afraid. Our doctors can’t tell us for sure what are the possible consequences. Do you have any experiences with flying?
Thank you in advance. God bless you all,
Anna
Hi Anna,
Thank you for sharing your story regarding your sister. I am always very pleased when anyone responds here, and in particular people who have a medical background as it brings an added element of understanding to the subject.
I am intrigued by the the fact that your sister’s doctor was “not sure” about the possibility of varices, as I always believed that when the portal vein is clotted that the pressure would cause varices in the esophagus and the upper part of the stomach? As for travelling I have made a few trips over the years since my diagnosis of PVT, but I am on blood thinners so have always believed that would prevent further clotting – especially when travelling or sitting for several hours. Is or has your sister ever been on blood thinners for her condition? Secondly … I have recently learned that some children are born with an infection in the embilical cord, which is known to cause portal hypertension. Most of the children were born prematurely, and interestingly I was told that many of these babies were born in Eastern Europe and primarily in the Ukraine.
Until recently I was on Fragmin injections (12,500 iu) twice per day, but my hematologist prescribed a new drug called Rivaroxaban in which I only have 7 more days coverage on provincial plan. The drug is very new still and is not approved by Health Canada for my type of thrombophila, but I am applying for a review to see if I can get coverage. I can’t afford to pay for this med myself, so I may have to go back on Fragmin as it is an approved medication under our provincial guidelines.
As my spleen is also enlarged, plus my white cells, and platelets are low (sorry I don’t have the latest numbers), I get yearly flu vaccinations in order to prevent illness which can complicate my situation in a short period of time. Does your sister receive yearly innoculations to prevent illness? I might also add that my liver is also in good condition – so I think overall that is a very good thing in the long run as I have been told by most of my doctor’s.
Lastly, I know you would understand this as you yourself are a medical student, but I always tell people to check with their doctor’s first before taking anything I say at face value. Thanks again for your valued input … please keep me/us posted of any new developments regarding your sister.
God bless you also!
Clint