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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108 thoughts on “My Portal Hypertension Journey

  1. Rosie O'Connor

    Clint: My husband just had 9 varices banded one week ago. Altho he never had a major bleed, to our knowledge, they DID find stigmata showing there had been a previous bleed somewhere along the line. My question is, should he still have discomfort a week later? Sometimes, when he eats or drinks, he gets a headache that effects his jaw and ear as well. And the ‘heartburn’ feeling. It doesn’t happen all the time…and it DOES pass quickly. I have him on a low-sodium diet (we won’t even GO THERE!) and he’s drinking Ensure plus. I realize the heartburn feeling could be that he’s still healing, but the other symptoms have me worried. Hell, EVERYTHING has me worried! He’s got an appointment with his doc in NYC on Thursday. Any thoughts?

    Reply
    1. Clint Post author

      Hi Rosie,

      As always I am always saddened to hear of anyone who has to contend with PH and this includes their family members of course. I hope and pray your husband continues to improve each day, and that he never has to contend with further complications of bleeding.

      I’m not going to say why your husband has discomfort as he does, but can only speculate and say that is does have something to do with the varices being banded. The time frame for the varices actually “sloughing” after the banding is not something I am familiar with, however when they have actually fallen off, the ulcer left over from where they once were located could cause discomfort and this could be the reason for his heartburn. As for his headaches, there could be a number of reasons for that of which I can only guess and say that maybe because of the cirrhosis, there could be some toxins not are not reaching the liver. When those toxins are not filtered out due to the liver being compromised by cirrhosis I suspect that headaches can occur. For the few people I know who follow this blog who actually have had bleeds and banding, they have told me that the side effects of blood bypassing the liver, can cause encephalopathy which presents itself as memory loss, and in more severe cases combativeness, and/or irrational behaviour.

      I know what I have told you here is not very concise, so I always recommend that people ask their doctors and not take what is said here at face value. There is a lot of information on this blog, and I hope you have taken the opportunity to browse through some of the posts, to better help you understand what you are dealing with, albeit from the personal experience of some of the people I have written about, and finally my own journey.

      I hope this helps? Please let me know if you have any other questions and hopefully I can answer them or direct you to the right person or persons who can help you better understand the challenges you are now faced with.

      Kindest regards, Clint

      Reply
  2. rosie

    Thanks so much Clint. Today he seems to be eating w/o the discomfort. I’m grateful for any little improvements day by day. Tomorrow’s the doc’s… holding my breath.

    Reply
  3. Chasity

    Hi!
    My Mother in law just had a CT scan that showed portal hypertension and showed her liver as healthy. She is being referred to a specialist but her doctor told her very little. not even to avoid alcohol. she doesn’t have the internet so I did a lot of research and now I am terrified. I have told her to avoid alcohol even though she doesn’t drink much anyway and to reduce her sodium intake. Will she be able to live a normal life? she is very active and actually looks after our kids while we work each day. What percentage of people with PH have a bleed? we aren’t sure what has caused it yet…but it is scary. and where we live the waitlist to get to a specialist can sometimes be very long. thanks in advance

    Reply
    1. Clint Post author

      Hi, Thanks for posting on my blog. I am sorry to hear about your mother-in-law’s recent diagnosis. It can be scary and overwhelming to learn of a condition such as this, but try not despair as there is a standard protocol the world over for treating this condition. Like your mother-in-law I have non-cirrhotic portal hypertension, which of course means that my liver is relatively healthy. Having lived with the condition for over 12 years now, I have had some scares along the way, but am thankful that I live a relatively normal life as do many others. The standard treatment protocol is to place patients on a beta blocker such as pro nadolol, and a blood thinner to stave off any further clotting. The cause for my condition has never been determined, and this after extensive testing looking for a genetic connection. For some patients they are able to find out the cause, however the treatment is relatively the same for all. In extreme cases doctors can insert shunts to take the pressure down, but the clot itself can not be removed, because of where it is located. Although clots in other areas of the blood system can dissolve over time, these clots will not do that because they usually attach themselves to the portal vein. This is commonly referred to atrophy. Normally children are more suitable candidates for any shunting procedure, and from what I have learned the success rate is greater for them if they are under 15 years of age. I’ve probably shared too much information in this short reply, and I never want anyone to be anxious over this, but simply take consolation in the fact that it can be controlled and one can live a pretty normal life. I want to be sensitive here when saying this as others may be discouraged, but the fact your mother-in-law has a health liver is a positive factor. I hope this helps? Please feel free to keep the dialogue going, and I want you to know that sometimes I can get delayed in responding to comments, I always reply to everyone. If you have a Facebook page you can access my page through that (Portal Hypertension) and also I would highly recommend visiting a page called Portal Vein Thrombosis and Portal Hypertension in Children and Adults, of which I am a member of and contribute too every now and then. Keeping you and your mother-in-law in my thought and prayers.
      Best, Clint

      Reply
  4. Audra

    Hello Clint,
    It has been awhile since i posted on this website. I wanted to let you know I have my anemia under control. After many sessions of iron infusions I have had normal hemoglobin and ferritin levels for the past year and a half. My levels are checked monthly and the moment they start to drop I am scheduled for another round of iron infusions. I feel revitalized and am leading a quality life. Esophageal varices are checked yearly and outside of the odd one developing and being banded I have had little to no complications in this area. It is coming up on eight years (Sept. 2008) since my initial diagnosis of non-cirhotic idiopathic portal vein thrombosis and I am feeling as well as I can expect. I am writing to give encouragement to anyone recently diagnosed with PVT and PVH. I have been able to travel, ski, golf and go to exercise class with some modifications. There is hope after PVT! All the best.
    Audra

    Reply
    1. Clint Post author

      Hello Audra, Thanks for your note! It is great to hear there is life after PVT! Happy to hear that your anemia is under control, and that your ferritin and hemoglobin levels have been normal. There is quite a bit of maintenance with a condition such as ours, yet you are another person who seems to have adjusted well and continues to live a normal and both active life. Way to go! All the best to you and may you have many more great years with no further complications! Kindest regards, Clint

      Reply
  5. Erica

    Hello! I’ve found your site somewhat by accident. I do feel blessed to have found it though. I am 33yo female. I developed extensive clots in my portal vein secondary to untreated sepsis in 2012. We have an awesome God as I went 16 days with untreated sepsis. Yes really truly. Unfortunately, as a reults of that horrific illness my portal vein hardened, died, and reabsorbed. Now I suppose I don’t technically have PVT bc I don’t have a portal vein, but, I do have enlarged liver and spleen, 67,000 platelet level and low thrombocytes. I too have ongoing pain for which I refuse to stay on narcotics so I just deal with it. Recently I learned the incision I had for pancreas surgery (where this whole mess began) did not close and now I have around 5 hernias. It’s definitely scary to me what all has happened and I want to live a long life but just can’t say what the future holds. The doctors have me do bloodwork annually now and that’s it. I get the sense that’s bc they have no medical help to offer. I am forever thankful God can handle this.
    To read my full story (titled, “My New Testimony”) please go to my WordPress blog at http://www.alivebecauseofchrist.worpress.com

    Reply
    1. Clint Post author

      Hello Erica,
      So glad you found my site, and I am sorry it’s taken so long to reply to your comment! There has been much going on in our lives lately, and it would take too long to explain, so please forgive me. Your story is a wonderful story of God’s grace, and I definitely can relate – thanks for sharing it. No one knows the future, but we just have to “press on” in the circumstances and pray that we live a long time despite the obstacles of pain and the inconveniences of the condition. I am 56 now, and was diagnosed in 2002 (age 42) so I have lived 15 years with PH so that in itself I hope is encouraging to you or anyone else. Please keep in touch for any questions or comments you may have. Blessings, Clint

      Reply
  6. Caroline natalio

    Hi Clint…were from philippines,my daughter also suffers in portal hypertension..she is now 3 years old,mostly bleeding comes after a year..do you think my daughter will bleed again?

    Reply
    1. Clint Post author

      Sorry to hear about your daughter. I am not sure if you daughter will bleed again…this all depends on many factors.

      Reply

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