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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Clint,
I think you are doing great things with this website, and I am going to recommend it to my liver clinic in Cambridge UK.
Good luck to all! From a doctor……
Tony MB etc……
(with cirrhosis)
Hi
Thank you for all the informations that I found in your blog.
My name is Marco, I’m 32 and I’m from Italy even if I’ve been living in Ireland for the last 4 years. I had a thrombosis of the portal-splenic-mesenteric veins last January. Unfortunately it is chronic as there is already a portal cavernoma. I’ve a portal hypertension, esophageal varices (f1 – i think it means grade 1), gastric varices and the spleen that is larger. I’ve also have problem with my platelet as the spleen is so big.
At first I thought I just had to take the Warfarin and not doing dangerous sports… and everything would be ok. But then, 2 months ago i start to have pain again on my liver, so the doctors explain me better. And I’ve realized that the problem is serious.
The liver can have problems in the future due to the portal hypertension, and the varices can bleed at any time. I have to take a b-blocker and another medicine for the stomach. And also go on with the Warfarin. I cannot do sport as I did before, and i have to avoid alcohol.
I’m single and I’m living abroad. So I’m considering of moving back to Italy, even if it will means to lose my job and restart everything (and this is not a good period), but at least I will be with my parents and my brother. Also the idea of starting a relationship and, in case, a family at the moment has become scary. How can I start a relationship if it’s like I’m on a razor’s edge? I definitely don’t want give my problems to another person.
This is question that I will have to answer in the next months/year.
By the way, thank you again for all the informations that I’ve found here.
You are a great person and I wish you all the best!!
Marco
Hi Marco,
Thanks for visiting and commenting on this blog. As with anyone who visits and relays their story regarding portal hypertension – my heart goes out to you!
It sounds like you are on the standard medications for portal hypertension so in that regard that is good. Although there is no cure or quick fixes known at this time, the medications have been proven to stave off the inevitable so that seems to be what is keeping most people from serious episodes as related to the condition.
All being said, I would like to encourage you if I may and start by saying that I have survived over 10 year’s since my diagnosis and this is despite the fact that I have grade 3 varices, my spleen is clotted (and enlarged), not to mention the messenteric and portal veins. I am 52 now, so I feel blessed that I have been given this time, and that is due to the good doctor’s I have, plus the fact that I am covered in prayer and God watches over my life. I have a wife and an 18 year old son, so it is difficult to imagine that I could leave them behind, but my life really is in God’s hands. For you, I would not give up on starting a relationship as there are some great ladies out there who I believe can look beyond your illness and love you unconditionally. I believe our lives and times are up to God, and ultimately He can sustain us under any circumstance. I am not sure whether or not this condition can be passed on to your children, and as far as I know there are 7 known genetic causes for this condition, unless of course it was caused by hepatitis or alcohol abuse. In my case my liver function is really good, and they have ruled out all the known genetic causes, but still have not found out the cause.
It is important to have family around for sure, and it would be hard for them and you if you were to have an episode so far away from them. If it means that you have to move home and find a new job, then I will pray for you in that regard. I will also remember you regarding your health. If anything new arises on the portal hypertension scene, I will post it as soon as I can in order that you and others may benefit also. Concerning anything you learn regarding the condition, please let me know so I can inform others. I have a link from Facebook to this blog, and you are welcome to like the page in order to be informed of any new posts. Visit: https://www.facebook.com/PortalHypertension
Thanks again for commenting! I’ll pray for you in the days ahead.
Clint
Hi Clint,
thanks for your words!
I’ve read some post on this blog, like Janet and Pablo. So, there’s always hope that everything, or something will be heal!
I don’t have facebook but I will keep reading this site for sure!
Thanks again,
Marco
Thank you to you Marco!
All the best,
Clint
Oh, man, oh man. I just realized how much trouble I’m in. In early July I was diagnosed with portal hypertension, and I do have large varices in my esophagus. And up until this moment I’ve been casual about the whole thing because I didn’t understand the danger.
In the past I’ve had flare-ups of my autoimmune system, and the doctors think the autoimmune may be the source of this problem as well. This is going to change my whole life.
Hi Clint, your sister Colleen has been keeping me informed on the present situation. I want to let you know that many of us are praying for you and your family. Today is a big day for you and I hope you had a peaceful rest last night. God Bless, Laura
Thanks Laura – your prayers mean more than you can imagine. Colleen has been good to update me also on your life and I am always glad to hear you are growing in your faith and life has been good so far.
Blessings,
Clint
Hi Clint,
I am friends with your niece Leanne. I am praying for you and for your recovery. She sent me this website and I will keep checking in on you. Best wishes,
Noreen
Thank you for your kind works Noreen. Bless you for your prayerful support!
Clint
Hi Clint,
My story started at 38, and I am now 53… it seems no one ever took me very seriously because, according to everyone, I look so healthy. At 38 I learned from a spirometry test that I only had 70 % of my lung capacity (my mother died at 55 or COPD)… some doctors told me I had asthma–others told me I did not… Overall, the consensus was to exercise and just keep plugging along so that is what I have done. Last October, my family doctor had some blood work done and my ANA was slightly elevated…I also had a CT scan of my lungs, which showed that I have some scar tissue in both lungs, some linear consolidation to the lung bases, and a couple of small foci of bronchial thickening and bronchiectasis. On both my lung CT and a heart Echo, a trace pericardial effusion was noticed…however, the diagnosis by the pulminologist was still asthma (however, I’ve never had an attack and asthma medicine does very little if anything for me and this exact picture is listed on Mayo’s site as one consequence of lupus). My family doc sent me to a rhumatologist who took one look at me and said I was wasting his time–perfectly health, but he did blood work anyway to appease us all. When the results came back, he told me my mitochondrial marker came back high and said this was a precursor to lupus and put me on plaquenil. I was so happy that someone was finally taking me seriously that I did not even ask to see my labs. I trusted him. He did more blood work five months later and told me I was fine (took me off the plaquenil). I was supposed to go back to see him at the end of this coming October. Recently, when I started having thyroid problems, I went back and asked his office for my labs. I wanted to see if my thyroid had been elevated previously. However, instead I found that the maker he had noticed as high last October was an AMA M2 marker for biliary cirrhosis. Not exactly what he had mentioned… and when he ran the second set of blood work (and told me I was fine), he had not even run the AMA M2 test again. I could scream. My liver functions are still within normal ranges (no thanks to him), but they seem to be eeking up. Don’t know if that means anything. Thankfully, I have an appointment now at the Mayo clinic in Jax. FL on October 11th. I have not had a liver biopsy yet… but I also have osteoporsis (just dianosed) and my thyroid seems to be heading toward hypothyrodism. Both of these are consistent with biliary cirrhosis (PBC). I’m frustrated and want to have some resolution to this so that I can get on Urso if necessary. I do not want this to progress. I also don’t know if I have both lupus and biliary cirrhosis or if the PBC could be effecting my lungs and heart. I hope I am one of the people Urso works for. I’m praying.
Thank you for listening and for sharing your story.
Helene
Hello Helen,
Thank you for sharing your story. Like most of us it is complicated, and on that note I commend you for including the technical background in that note so that others can learn or even watch for the same numbers. Lupus seems to be more and more common these days and I wonder if there is a corellation to portal hypertension. I always thought, and I could be wrong that Lupus affected more women than men, and the same I think may be true for Fibromyalgia. I consider myself to be somewhat knowledgable regarding Fibromyalgia as my wife has had this for many years. I think the symptoms are much the same, but again I am speculating on this one.
Please feel free to come back here often and share you journey.
Prayerfully,
Clint