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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Thanks for your honesty and openness in regards to this condition. I hope this blog finds it way to people who need it.
I have shared your URL with my online friends. They are lifting you up in prayer!
Thanks Gail … your prayers are very much appreciated. Blessings, Clint
Prayers For PEACE Daily and Having DOCTOR JESUS/GOD Too HEAL You Daily Friend !!!!
I am the mother of a daughter with PVT. She is a twin and was born premature at 28 weeks. From birth she was one to always catch things more easily than her sister. At age 3 she was diagnosed with splenomegaly. We went through lots of testing to rule out leukemia and was incorrectly diagnosed with an autoimmune disorder. In 2009 she spent a week at Children’s Hospital when she was finally diagnosed with PVT ( due to an umbilical catheter used when she was born). Since then she’s had 2 endoscopies that show both esophageal and gastrointestinal varices. She is taking Nadalol and prevacid right now and has not had any bleeding or banding (praise GOD) but we are not content to just sit and wait. With much prayer and research we have visited many specialist, compared surgical procedures and have decided to consult Dr. Superina for the Rex shunt procedure. We have an appointment in October and are praying that this will be the answer. God has protected her health through this. She has not had any issues but we want to be pro-active! Other than the PVT with varices, she is in excellent health and we are so grateful. Thank you for this site! I am praying for a good report for my daughter and will let you know what we find out from Dr. Superina. My prayers are with all who suffer!
Kim- thanks for sharing your daughter’s journey with PVT and subsequent varices. I can only imagine your heartache dealing with this, but it sounds like you have a strong faith in God and that always helps! My friend Claire, a fellow sufferer from Australia has recently consulted with Dr. Superina and he is reviewing her case for possible surgery. Claire is an adult so this is a rarity for Dr. Superina in that he mostly deals with children. On that note, my understanding from the folks I have spoken with, is that the condition of the portal vein is stronger in kids, as opposed to adults making the operation (Rex Shunt) a good alternative. I had heard several months ago, that the operation has been performed successfully by Dr. Superina over 100 times. I would imagine that number is much higher on a world scale, as there are other doctors performing the operation in their own countries. Like your daughter I have not had a bleed from my esophogas (only 1bleed from my stomach), and I also take Nadolol and a protein pump inhibitor called Pantoloc. The standard protocol for PVT right now seems to be beta blockers (to keep the heart rate down) and meds to tame the acid in one’s stomach and or esophogas. I am anxious to hear what Dr. Superina says – and yes please let me know! Thank you for your prayers for fellow sufferers – I know it means alot! Blessings, Clint
Clint – Thank you for sharing your story. I will keep you in my thoughts and prayers.
My son’s story is very similar to Kim Lowhorn’s. My twins were born early at 29 weeks and one was recently diagnosed with portal hypertension due to a clot in his portal vein (which was also caused by an umbilical catheter used while he was in the NICU). We are currently discussing surgical options with Dr. Superina in Chicago as well. I would love to get in touch with Kim Lowhorn as our stories are so similar…
Hi Jennifer – thanks for your post and also your thoughts and prayers. Trust things will become much clearer for you as you discuss your little guy’s options with Dr. Superina. From what I know Dr. Superina consults with doctor’s on both sides of the border and also other parts in the world. I know he is currently reviewing an adult case for a gal in Australia who I met through this site. Blessings, Clint
Hi Clint! Thank you for your story. I hope you will get healthier soon.
My story started in 2007, when esophageal and stomachic varices suddenly happened. I lost 3 l of my blood…I was 21 years old, when I was informed that I have portal hypertension, splenomegaly etc. Before I thought that I am absolutely healthy girl. So after that I had an emergency, endoscopic banding ligation, liver impairment because of internal bleeding in my stocmach, varices again (duodenal and stomachic), and again…during one month I had the three varices and two logations. In June, 2007 my doctor performed distal splenorenal shunt procedure. It was in Saint-Petersburg, Russia. I was not in a good condition to have such a surgery that time, but varices occurred too often and he decided to perform a surgery. Now I am 25 years old, still alive, living normal life and writing my doctoral thesis in Stockholm.
God bless you, Alisa.
Hello Alisa,
Thanks for sharing your story and another amazing one at that! Glad your health is normal now as you are so young. If you don’t mind sharing … did the doctor’s ever determine what in the first place caused your portal hypertension? Was it a genetic cause? Wishing you all the best on your doctoral thesis! Blessings, Clint
Hello Clint,
Thank you for good wishes. My parents do not have such disease, but my grandfather died because of the liver cancer. Since my liver was not impaired by cirrhosis, my doctor thought that the cause was genetic.
Kind regards, Alisa.
Thanks Alisa.