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,
thank you very much for your quick reply.
My sister used to have esophageal varices in the past few years, but now, thanks to her natural shunt, she doesn’t have them any more. She only has to have gastroscopy done every year to control the situation. Last year both the esophagus and the upper part of the stomach were clean and we were allowed to go on holiday by plane. This year gastroscopy was performed by a young, inexperienced doctor and he wasn’t sure what he saw in the upper part of the stomach. He said it could be either forming varices or just a mucosal fold.
We were once told that travelling by plane is strongly prohibited for patients with varices as the pressure in the air can cause the bleeding. We’re now afraid to travel by plane with her, as we’re not sure whether she has varices under the cardia or not. Have you ever travelled by plane with your condition? I would really like to get to know other’s experience concerning travelling by air. Maybe you know of any forum where people can exchange info about portal hypertension and their experience? Of course, apart from your site, which is very helpful 🙂
Isabelle is not on blood thinners, she doesn’t have to take any meds at the moment. The recent CAT scan showed that the flow in her portal vein is not completely stopped, it is preserved to a small degree. Her spleen is still getting bigger, though, and her white cells and platelets are low all the time.
My sister wasn’t born prematurely, actually she was born a few days after the planned date (I don’t know the smart medical term for that, sorry :)). Most probably the infection in the umbilical cord, which you have mentioned, was the cause of sepsis in her case. My mom says the fact that most of the babies with that condition were born in Eastern Europe may be associated with the explosion in Chernobyl and the radiation sickness caused by it. We’re only guessing, though.
Isabelle doesn’t receive yearly vaccinations, our doctors say it would be too risky as her immune system is so weakened. They’re afraid that she would fall ill immediately after vaccination. On the other side, during every infection she ends up in hospital, because her white cells fall sometimes to even 600. We can’t find a good immunologist, however, who will tell us exactly what to do, how to prevent illness and how to deal with it. There are for sure more experienced doctors, who deal with such cases, in US or Canada, but as Isabelle can’t travel by plane, it’s difficult for us to look for help there.
Thank you once again for your reply and your valuable information.
Take care,
Anna
Hi Anna,
I am sorry for such a delayed response to your message, but I am having difficulties with my server for this blog and it will not allow me to directly approve comments as it should, but if I reply it is working just fine – which is always what I aim for.
I have a contact in the Ukraine who herself is a medical doctor, and coincidentally has a little girl with PH. In speaking with her and hospital personnel from Childrens Memorial Hospital in Chicago they mentioned that Chernobyl explosion is likely the cause of many people illness not only in the Ukraine, but countries that surround it. The doctor from the US (Chicago) was over in the Ukraine a few years ago, and he noted that many of the kids who had PH were born prematurely and had some sort of infection in their umbilical cords to begin with. At one hospital that this doctor visited, there were over 40 children with PH and most of them had the same symptoms at birth.
All being said and I have said this before, I am always saddened to hear that kids are having to deal with this disease and not only that but any kind of condition that may be life threatening. I will I could do more for these kids especially, but I am only one person and the only thing I can do is to say what I say and pray for them. If you haven’t yet noticed I am a person of faith, and I believe part of my calling is to offer support to people who are perplexed about this disease, and of course put them in touch with others so that they do not feel so all alone.
If you try to post here again and I don’t reply right away, I am working to resolve this server issue and will do my best to get back to you when things are working properly.
Kindest regards,
Clint
Hi
I am responding to Anna question. I was diagnosed with PVT and portal hypertension 3 years ago (see previous posts). I live in British Columbia, Canada and in the last 2 years I have travelled by plane several times. In January 2010, I flew to Arizona and in the summer of 2010, I flew to Toronto. This March I went to Palm Springs and in May to New Orleans. My doctor told be I was fine to fly because I am on Warfarin which should prevent clotting. I have also taken a few long car trips, making sure to stop every couple of hours to walk around. I hope this helps.
Take Care,
Audra
Hi, Clint. It was very interesting to find a site like yours to share with people that has similar experiences.
I would like to share with everyone about my brother’s condition. He was diagnose to have liver cirrhosis where his esophageal and gastric varices started from. As of this time, he is fortunate to not have bleeding, although he has low platelet count coming from his spleenomegaly. The good thing about his condition is that it was found out before any bleeding started and that he is now placed on propanolol, hctz and inderal.
Couple of weeks ago, he complained of stomach ache which prompted his gastroenterologist to order an endoscopy. That is when he found out that my brother has the varices.
Unfortunately, my brother is in the, Philippines, where interventions can be limited. Wish he is with us here in the U.S.
His doctor told him that he can never fly ever. Unseemingly, this may not be true because as you have shared you are able to travel even with your present condition. This is something that I might ask his doctor.
I will be including you in my prayers, and so with everyone who’s suffering the same condition. I hope that you all retain a better condition.
Hi, I hope I’m not crashing your party but yours is the most hopeful source of information I have found in searching for help with symptoms of portal hypertension. I’ve been reading through your blog for a while and haven’t come across anyone with a Hepatitis C diagnosis. In 2004 I was diagnosed with HepC, did 11 months of chemo+antiviral treatment that did nothing helpful. In 2006 I was diagnosed with portal hypertension. I’ve had no more treatment than medication to control acid reflux. In the last year I’ve developed an excruciating chest pain that is always in the same spot. I’ve had it off and on, sometimes for days in a row. No doctor seemed particularly concerned. This fall the pain has become a daily constant. Recently I’ve had a feeling like something heavy in my throat -lame description . . . it’s like it hurts to swallow as if the area just gets stiff. I frequently have discomfort after eating-sore throat and mild pain. Does that make any sense to anyone? Can the portal hypertension cause pain that severe? Could I have the beginning of varices that, while not bleeding, is causing a lot of discomfort? My family doc, here where we live in a rural area, says there are NO symptoms of varices except bleeding and so when I have bleeding I should let them know! Searching the internet for symptoms of varices is not much better-there too bleeding seems to be the only symptom worth noting.
My doc suggested something else was causing the pain, but prescribed nexium, which my insurance did not cover so that was the end of that. I already take prilosec, buy zantac over the counter and get little relief when the pain is particularly bad . . . then nothing helps.
Rachel
Γεια σας παιδια ειμαι και εγω ασθενης με πυλαια υπερταση,ειμαι 29 χρονων τωρα..Ενω οταν διαγνωστηκε η πυλαια υπερταση ημουν 3 χρονων.Ειναι μια παθηση δυσκολη και υπουλη αλλα μπορει ο καθενας να την αντιμετωπισει αν προσεχει.Εκανα αφαιρεση σπληνομεγαλιας οταν ημουν 5 χρονων και σπληνονεφρικη επαναστομωση κατα warren μετα απο αιμοραγια κιρσων 2 μεγαλα χειρουργια στην Ελλαδα…Αλλα το προβλημα δεν σταματαει τωρα καθε εξι μηνες κανω ελεγχο με αιματολογικες και γαστροσκοπησεις..Παιρνω φαρμακευτικη αγωγη μονο Interal propanololy..4 δισκια την ημερα..Βεβαια πρεπει να προσεχετε να μην κουραζεστε και να μην βαλετε κιλα γιατι αυτο επιδινωνει την πυλαια υπερταση..Ευχομαι σε ολους καλη αναρωση στους γονεις των παιδιων κουραγιο γιατι ολα θα περασουν,ειμαι σιγουρος οτι οι επιστημονες ειναι κοντα στην θεραπεια της πυλαιας υπερτασης η οποια θα διαρκεσει λιγα χρονια ακομα…Ευχαριστω ολους και τον Clint ιδιαιτερα που εκανε αυτο το ιστιολογιο για να μιλαμε..Καλα χριστουγενα!!!
The above message translated … Hi guys I am also patients with portal hypertension, I’m 29 years old now .. and when the portal hypertension was diagnosed I was 3 chronon.Einai a condition difficult and treacherous, but anyone can address whether the removal prosechei.Ekana splenomegaly when I was 5 years old and splinonefriki epanastomosi by warren after bleeding varices 2 major surgeon in Greece … but the problem does not stop now every six months I do checkups with blood and gastroscopy .. I take medication only Interal propanololy .. 4 tablets a day .. of course it must be careful not to get tired and do not put this epidinonei pounds because of portal hypertension .. I wish them all anarosi to parents of children COURAGE because everything will pass, I’m sure that scientists are close to the treatment of portal hypertension which will take a few years to come … Thank you all and especially Clint who did this istiologio to speak .. Well christougena!
Hi Clint
I am so glad I came across your site today. My father has been battling liver cancer for the last seven months, through alternative, integrative therapies and was doing very well. Unfortunately he also has portal hypertension and cirrhosis. Today was the first time he ever experienced bleeding and was informed of the concept of Esophageal varices , all very scary as you well know. We had no idea this was going to be part of his journey. Doctors immediately carried out the banding treatment and he is on a three day course of Meds. We are on pins and needles waiting to see how everything turns out. After reading your site I am hopeful he has a chance of managing this. Have you come across anyone on your journey who is also battling liver cancer (tumor) and cirrhosis ?
Thanks Clint
Yvonne
Hello Yvonne,
Thanks for your inquiry. For everyone who comments or for that matter reads this blog and they themselves or a loved is dealing with portal hypertension – I am always saddened to learn about their struggles. In particular it can be very confusing and uncertain when I person first learns of this, and you are no exception to that if you have been reading the comments posted here. In the 2 years I have now managed this blog I have been in touch with many people who have successfully survived banding and continue to live many years beyond the diagnosis. To date I have not come across anyone who is dealing with the 2 added complications that your Dad is dealing with, so I have no one to compare him with. If this is a 3 day course of meds I would be interested in knowing what he is on – if you know that as that may be helpful to others in the event they are dealing with the same issue. I am sure he will be on a beta blocker to lower his blood pressure in case of additional bleeds (if there are other varices known) and that seems to be the standard treatment for those of us with this condition. I can’t even begin to imagine how you are feeling right now as you said you are on pins and needles – all I can offer (and I hope you don’t mind) is for me to uphold your Dad in prayer. Overall I would appreciate knowing how the treatment is working, so if you can update me that would be great.
Take care,
Clint
Thanks Clint,
You are very good to respond. We are about two weeks out from the original bleed. I believe my father is now on a low dose of propranolol, original dose was too much and affected his blood pressure ( too low). He is actually going back to the doctor tomorrow to check on the bands that were placed around the veins.
With regards to the rest of his Meds, most of which are natural
1) selenium, zinc, magnesium
2) vitamin A, E
3) milk thistle, essiac tea, beta glucan,
4) vitamin D3
5) shiitake and reishi mushroom extract
He is also on a low sodium, meat and dairy free diet
We are hopeful this will help to strengthen him and fight off the cancer, minimize the potential of another bleed and also just help the cirrhosis,
Thanks again Clint. I will keep checking back in to stay uptodate on everyone’s progress
Yvonne
Hi Again Yvonne!
Appreciate you getting back to me. Sincerely glad that your father has had another bleed. I am very intested in knowing the reasoning behind the vitamin supplements. I can understand the logic behind the Vitamin D3, magnesium, and zinc, however I am not sure about the other products. I also think the low sodium, meat, and dairy free diet is a good thing for him considering what he is up against besides the portal hypertension (esophogeal varices). One thing I am concerned about, and maybe you have not considered this – is the vitamin E. Not to say Vitamin E is a bad thing, but if your father is on blood thinners already (especially Coumadin aka Warfarin) it acts as a natural blood thinner and it may throw off his I&R readings. I’m not on Coumadin because it does not work for me, but I am on Fragmin (needles) so I don’t have to have my readings monitored, however I try to avoid Vitamin E as it can worsen a bleed if that happens. Also Vitamin “K” which is found naturally in some foods (ie Spinach) can affect I&R readings – from what I have learned. These are just a few things I have found out through the years. As yet, and believe me I have asked (specialists/family doctor), I have never been given a diet to follow, except to cut down on sodium – which is never good for anyone. When I asked my family doctor last year about vitamins, he told me that basically we get most of what we need in a balanced diet with the 4 main food groups. For the most part he is right, but I beg to differ as I think extra vitamins in some sense can be very beneficial for most people – especially those not watching their diets or those with health conditions. My hematologist told me to take Vitamin B50 or B75 for the homocystine levels in my blood, and on my last visit he told me to take 4000 IU of vitamin D as new research is showing some good benefits to that. Calcium Citrate in particular is better absorbed than the other one (sorry can’t remember the name). A few weeks ago I had a doctor who also has portal hypertension come on this blog and leave a comment, and he told me that he thought the meds were important, but that Western medicine did not look to herbal treatments the same way they do in European or eastern cultures. There is value in both.
Thanks again for your comments … one never knows how any of this may help, but it is good to keep abreast of this most disconcerting condition and lend support wherever we can.
Peace, Clint