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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Thank you for sharing your story and all of the valuable information on your website regarding portal hypertension. My son aged 14 has portal hypertension due to chemotherapy treatment for leukemia when he was 6. I do not know of anyone who has had this outcome from chemotherapy. I do know that the drugs they used years ago (6tg for maintenance) could cause it. Have you heard of anyone having portal hypertension from chemotherapy? He has some esophageal varices, massive spleen, very low white count and platelets. At present his liver function is good although he has significant fibrosis. He is is currently not having any treatment whatsoever. Just blood tests every six months and endoscopy every 3 years, ( we are due for one this week, last one showed small varices). We have been told that beta blockers do not work in children to prevent bleeding so there is no point in him having them at the moment. I do have a faith thankfully, I do not know what I would do without it. Everyday is a big worry, full of what if’s when my lad is at school. Prayer brings the peace and hope that nothing or nobody else can. Best wishes to you.
Hello Karen,
Thank you for sharing your son’s story. It never ceases to amaze me that since starting this blog I continue to learn so much more about this most complicated and disconcerting condition. I know the latter does not sound so encouraging, but the learning is so valuable. I had never heard of chemotheraphy being the cause of portal hypertension, so this is a first for me – hopefully others will see this and share their own stories. The most obvious causes of portal hypertension can be linked to cirrhosis of the liver from either hepatitis or alcoholism, and the lesser known causes are genetic in nature in which the liver function is usually good, and there is no cirrhosis. Most people seem to have all the same symptoms such as esophageal varices, massive spleen, very low white count and platelets. Like your son my liver function is good also, but my gastroenterologist stopped performing endoscopes about 5 years ago due to the imminant danger of puncturing one of the (large varices) that are in my esophogas. I also was not aware of beta blockers not working in children, but maybe the logic behind this is that children’s blood pressure is not as elevated as an adult and that is why most adults have to be on them to lower the risk of a bleed? Thanks again for relating this information as I was told and incorrectly assumed that this was standard treatment protocol for most people with portal hypertension.
As far as worry goes – it seems so natural to lean this way especially when dealing with serious health issues. I do it myself, and especially lately as it was recently discovered that I have a gall bladder issue now, but my doctor’s are very reluctant to operate for the danger of bleeding and further clotting. (I find out tomorrow what the final word is when I see my doctor). That being said I assure you that God still watches over me as He does your own son, and “He – the God that is able to do much more than we ask – or even believe sometimes – will continue to preserve our lives despite impending danger. When it comes to one’s own children (I have a son also) we tend to be more concerned for them as opposed to ourselves – which I think is very natural. I’m not into giving “pat” answers nor do I want to seem “trite” but we have to look at what God has done in your son’s life in the past, and of course I also have to look at what I have been through and realize that God has been faithful. Make sense? Anyways I feel that part of my mandate here is to inform, and encourage others on this blog, but there are times when I take it much further and especially when it comes to children – I simply just have to pray – and that I will do for your son! Thanks for your story and thanks for your encouragement. Blessings to your son and your family in the days ahead. Keep me/us posted if you will.
Kindest regards,
Clint
I have cared for you since you were born.
Yes, I carried you before you were born.
I will be your God throughout your lifetime—
until your hair is white with age.
I made you, and I will care for you.
I will carry you along and save you. – Isaiah 46:3-4
Thank you for your reply and kind words. Yes sadly I believe my sons case to be quite rare in what has happened during chemotherapy. He was very ill on his treatment for cancer, sometimes jaundice, itchy and very sick. I did report these symptoms to his consultant several times but at one stage I was even told I was imagining them! I personally think he has had too much chemotherapy resulting in this injury to his liver causing the portal hypertension. I know children are sick when they have chemo but my son was sick ALL the time, even on drugs that was not suppose to cause sickness. Eventually he had to be hospitalised with the jaundice as he got so ill, they had to listen then! However I think the serious damage was done by then. I have spent hours and and hours, probably totalling to days researching on the internet about why this has happened. Although I will always be so very grateful for my son not to have cancer due to the chemotherapy, I think if the drugs were reduced around the toxic symptoms he was having , he would not be like this now. I can not turn the clock back and change things, how I wish I could. But it really does make me so annoyed when these Dr’s and consultants talk down to you or treat you like a neurotic mother, which is what happened to me. I am sorry if this sounds like a rant . It is also a warning to any other parents out there that ‘We know our own children and do not be intimidated by these people’. They do make mistakes. I am not too sure why they do not give the beta blockers, perhaps it’s just here in the UK. They did say that they do not work in kids with PH. Well they can’t work in some countries and not in others. I wish you all the very best for tomorrow, I will be praying for you. Big days for us both, my son has endoscopy booked. The words of faith you write are very encouraging on this journey, to know we are not alone. Will post after endoscopy results. Thank you again for this site
Kind regards
Karen
Karen,
You are by no means a neurotic mother! Your son has been through alot and most Mom’s I know would not just stand by and let their children suffer. You need strength for that and faith with lots of prayer is the key!
Best,
Clint
Thank you for kind words. I will keep you posted. I wish you all the very best.
Hi,
I’ve been watching this site for a while now but until now have not had the courage to speak up. I have recently been diagnosed with Cirrhosis and Portal Hypertension. At the moment I have compensated cirrhosis (which means that my liver function is ok for the time being). Whilst this diagnosis itself is hard enough to take in, my journey began as a result of a gyno problem which resulted in an MRI which revealed the varices (unbilical). Because of the varices I cannot have the surgery I need in order to start a family so I have had 2 life changing diagnosis at once which i am beginning to come to terms with. I am 39 years old.
Like many of the posts here I am surprised how little advice and support there is out there for this chronic and potentially life threatening condition. I was so pleased to stumble across this site as I have a thurst to understand all that I can about my condition so I can continue to live a comfortable and happy life. I describe it to my friends that it feels like a heavy object is suspended above my head and could drop at any time.
I saw my consultant again yesterday to commence the next stages. He has confirmed that I will need bloods taken every 3 months and an endoscopy and ultrasound every 6 months. He is also starting me on a low dose of proponal to get the high levels of presure they have recorded under control. Whilst I do feel confident that I will now be well taken care of, I remain in shock that this is even happening to me, but I’m sure in time that this will all become very routine.
It’s great to know that I am not alone in this, until now I didnt know anyone else who has even heard of this, least of all experienced it. Many of my family and friends like to think that somehow I will just get better, and I’ve given up trying to tell them otherwise now. The fact is, only a liver transplant will change my health, but thankfully, thats something I need not worry about yet.
I’d be interested to hear anyone else’s expereinces and any advice you have about living with this condition and things I can do to help keep myself healthy.
Take care all
Nicki,
Thanks for having the courage to post.
For sure you are not alone in this journey, as seemingly rare as it is. Assuming you have read some of the posts and subsequent comments you will recognize a common thread in it, however each individual persons journey is different from another. I can relate to the feelings I had when I first learned about my PVT, and the shock I had at the discovery. As I said each person is different, but if there is any encouragement I can give you your doctor has started you on propanol to keep your pressure low in order to prevent a bleed, and that is standard protocol. Unfortunately I only know of one person who had their clot dissolve in the portal vein, and this is because they were in what is termed the “acute” stage of diagnosis. I confirmed this with my gastroenterologist the last time I saw her, as I usually ask lots of questions which I get from others on my blog or run across in some of my research. You said that there will be blood tests, which is pretty standard and for the most part endoscopies are needed to determine the grade of the varices and exactly how many you may have. By no means do I want to scare you but you ask your doctor after an endoscopy is done to tell you what grade the varices are. In the US they are graded on a scale of 1 to 4 and in Canada where I live it is from 1 to 3, with 3 being the worst (I have several columns of grade 3). If there are red spots on the varices themselves, I believe that is part of the determination as to the grade. My specialist stopped doing endoscopies 5 years ago as it was far too risky and she did not want to puncture one of the varices in the process.
In summing up I realize I may have caused you some concern, but it is important that you know the facts. Despite the dangers I have survived this condition for almost 10 years now and there are others out there who have also done well, even after they have had bleeding episodes. Thankfully I have only had 1 bleed from the varices in my stomach and that happened almost 8 years ago. Regardless of my initial shock after learning I had what I have, I can honestly say that I have an overiding peace that has carried me through all these years. I have a strong faith and with that many people I know (and some I don’t even know) have prayed for me, so in turn I do this for others. It may sound trivial to some, but there is no other explanation for the way I am today. To be honest I do have times where I get distressed thinking of what may happen, but those times are very few and far between! With this condition there are many reminders that all is not well, such as all the meds I take on a daily basis (including 2 needles per day), intermittent pain from the corroded arteries in the bowel region, and the many doctors and medical procedures I do to keep me going! One can live a relatively normal life, but I am sure you will find people who may look at you and think there is absolutely nothing wrong with you – I find this to be very true. There are no special diets out there to follow, but be careful with alcohol, and stick to your medications.
I hope this helps? If you don’t mind I will pray for you and I know others who view this will do the same. Please take care and come back again if you need to share or you need support! Take care, Clint
Just found this site today and had been posting on DVT forum previously. Have had PVT for 9 years making it a chronic condition and had one episode of bleeding esophageal varices 3 years ago. I have had numerous endoscopies with 5 sessions of banding and at last scope had Grade II varices. Have been on nadolol to keep the pressure down and was restarted on coumadin a year ago to help with the liver pain associated with this condition. The feeling was that thinner blood would flow more easily through the collateral veins that had developed and it did help with the discomfort. Of course it was pretty unnerving to know I had very thin blood with a history of bleeding varices but I was willing to try anything to try and get a normal life back. It was also found that my mesenteric and splenic vein had thrombosed but fortunately, my intestines never became ischemic. Today I went to my specialist for my annual checkup and Doppler Ultrasound showed normal flow through the portal vein – main, right and left! Had no idea after all these years that this condition would reverse itself but can only thank God and my doctor that it did. I can stop the coumadin and the nadolol and hopefully get the stamina back to start exercising again and, along with good nutrition, back to my old self. I tell this story to let you all know that it can happen, and not only in the acute stages. The clot was attributed to 9 months of hormone replacement therapy so my liver was healthy to start and luckily remained healthy throughout this whole process which I’m sure helped in the overall picture. My heart is with all of you, I know what you’re going through and hope and pray that my story becomes your story. Godspeed.
Thank you Janet! Absolutely amazing story! Never heard of a complete reversal before except only an acute case which someone reported a few months ago! Not only will your comment show up here, but I am going to post a story on my blog regarding such as people would be encouraged. As for me I had some extensive imaging done lately and unfortunately my clots are still very prominent. I was having some gall bladder issues and with the 3 scans plus an ultrasound it showed congestion covering the gall bladder thus making is hard to detect on the tests. Unfortunately I have extensive bowel ischemia and this is the cause of my pain. All being said I hope that your story becomes my story and also for the many who visit my site from around the world. I’ve always believed that God can intervene for anyone, so I never give up hope. God is good!
Thank you all for the information and experiences. I am just going through the possibility of PVT which was discovered by a CAT scan. We are awaiting the results of the Ultra-sound and crossing fingers. My was recently diagnosed with Stage IV Colorectal cancer which metastasized to my lymphnodes and pelvis. I am undergoing Chemo but fortunately my PET and CAT scans are looking good. That is when the Radiologist found a possible small clot in my Port vein. I try to keep active despite my condition but not too sure what to expect or how this came about. I still have 3 months of Chemo to complete and have to discuss that with my Oncologist on the next options. Hope I am not imposing on your site. Thank you for putting this all together. Will keep you posted.
By no means are you imposing on this site. I am sorry to hear of your complications and I hope/pray that your condition will improve!
There is so much to learn about portal hypertension and its contributing factors. Your comments may make a difference for someone else who may be going through the same thing right now. Please – by all means keep me (us) posted. Take care and God bless you!
Sincerely,
Clint
Clint,
Thank you for this site!
Heidi