I Have Portal Vein Thrombosis

A Portal Vein Thrombosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Portal Vein Thrombosis. You're not alone. 124 People

    2009 scanned myself as a CT tech b/c no one was

    listening. Given one year to do something or I would die. Varices banded 6-9 times from 2009-2011, clot removed at U of M, PVT resolved and came back in 2011. Traveled to U of M, Cleveland clinic, mayo and Henry Ford in Detroit to find my surgeon who did a Spleno-renal bypass...
    Icthruu Icthruu
    36-40, F
    May 3, 2014


    I was diagnosed with portal vein thrombosis July 15, 2009. I have found so little information about this condition and my doctors all know nothing. Finding this website and reading the 13 stories here has really been a total life changer---I am no longer the freak with...
    saracalifornia saracalifornia
    46-50, F
    4 Responses Oct 31, 2010

    Newly Diagnosed Pvt Lupus Related

    First, I want to say that I am so happy this blog is available. It has helped me to not feel so alone. My story began 15 hrs ago when I had a bizarre reaction to a surgical procedure. I am a nurse and knew that I needed to bet in to see the dr as I was goi g into congestive heart...
    Darschutt Darschutt
    1 Response Apr 13, 2011


    I was having severe abdominal/back pains for about a month when I finally couldn't take it anymore and went to the ER Feb 1, 2009.  They ran a CT scan and found I had PVT.  I was put on heparin for a week followed by coumadin since then.  They ran a battery of...
    coloradogirl1 coloradogirl1
    46-50, F
    6 Responses Nov 23, 2009

    I Got Pregnant Whilst Undiagnosed With Pvt And Portal Hypertension And Have A Wonderful Miracle Baby

    Apart from feeling constantly tired over the past few 10 years which I assumed was due to my busy job until my hypothyrodism was diagnosed last Feb (aged 38), I had enjoyed good health all my life and had no idea I had any serious medical problem. In March I visited my GP with...
    juliesomerset juliesomerset
    36-40, F
    2 Responses Aug 12, 2011


    I'm a 54 year old nurse, wife and mother, and I was diagnosed with portal vein thrombosis 13 years ago. It came on suddenly over a 3 day period with excruciating abdominal pain and weight gain of 15 pounds. After I was diagnosed with polycythemia Vera, they diagnosed the portal...
    Jlynbeach Jlynbeach
    51-55, F
    1 Response May 8, 2012

    Started At Birth

    Hi everyone, I have been going through quite a bit of your messages and stories and have found that I am not as "unique" as my doctors have been putting on! In a sense I guess this is good news... as this means that there is more going on to find solutions than I first thought...
    tumbleweed85 tumbleweed85
    4 Responses Oct 10, 2013

    PVT Caused Liver To Shrink?

    Hello I have a question about your liver after PVT. I had emergency gallbladder surgery in 2009 anda week later a PVT . They determined both were caused by birthcontrol. Recently I had an MRA. This MRA shows that my liver appears to be largely resected... is this normal? I...
    Shelly1977 Shelly1977
    36-40, F
    1 Response Feb 22, 2013

    Portal Vein Thrombosis After Splenectomy

    I had a splenectomy 3 weeks ago due to a blood condition called ITP (low platelets). My platelet count went up to 1200 000 after and I ended up back in hospital with a portal vien clots. I'm confused as I'm now on WALFRIN to thin my blood but my platelets remain high. Does this...
    Bubbygio Bubbygio
    2 Responses Oct 13, 2013

    Thrombosis Cured - The Zenni Method

    read it :) :):) EP Link catarina, therapist
    catarina30 catarina30
    31-35, F
    Mar 23, 2013

    Recent Portal Vein Thrombosis

    Hi, I can't believe I came upon this site.  I have just recovered from 2 blood clots in my portal vein, they have completely resolved and are no longer seen on a recent CT.  My story goes like this.  Last April I had a very severe ischemic colitis attack...
    coco12 coco12
    56-60, F
    13 Responses Sep 2, 2009

    Portal Vein Thrombosis, Splenic Vein Thrombosis, And Mesentary Vein Thrombosis

    I ha.d surgery 5 months ago (splenectomy) and within 2 weeks devolped severe pain, night sweats, and low grade fever was hospitalized and within several day was diagnosed with portal vein, splenic vein, and mesentary thrombosis.  I am on coumadian in severe pain and feel that...
    carebear33 carebear33
    31-35, F
    1 Response Sep 10, 2011

    Me And My Pvt

    I cannot believe I finally found a place where other people have had PVT. I suffered with PVT in October 2008. To make a long story short, pain started in beginning of October, and by the end of October I was on Lovenox shots and warfarin. My doctor is GREAT and always listens...
    smiller67 smiller67
    1 Response Jan 23, 2012

    Not A Club I Wanted To Join ...

    But so glad to find some other people with similar stories. I have portal vein thrombosis, splenic vein thrombosis, and superior mesenteric vein thrombosis. I had never heard of these terms until 6 weeks ago. I was experiencing severe abdominal pain, with vomiting. It got so...
    treythrombosis treythrombosis
    2 Responses Jul 13, 2010

    Recently Diagnosis With Pvt

    After many years of pain and suffering including having my spleen removed, pressured removed from the portal vein by rerouting the blood flow and extensive hospital stays, different procedures, being told I have everything from a genetic disease to liver failure, I have finally...
    bellcalbell560 bellcalbell560
    2 Responses Aug 26, 2011

    Pvt W Varices

    I am writing on behalf of my husband, Phil – and, as many of you have said, am very happy to have a resource for information. Phil (now 56) has had PVT for almost 2 years. I realize that details are important, but I will try to be concise. The doctors believe it began with a...
    PhilipW55 PhilipW55
    56-60, M
    Jun 27, 2012

    I was 28 weeks pregnant

    and found out the amniotic fluid was too low to sustain the pregnancy and my baby passed away. I was told I developed portal vein thrombosis because of my pregnancy complications. I ended up in the hospital twice with severe abdominal pain and am now on Coumadin for an...
    kristi72401 kristi72401
    36-40, F
    Aug 9, 2014

    My Husband Was Diagnosed With PVT

    My husband was experiencing mild abdominal cramps for 4 days.  We thought he had acid reflux and treated it with tagamet on the third day.  That night he woke up with abdominal pain and had difficulty sleeping.  The next morning he went to ExpressCare(outpatient center) for...
    renocapp renocapp
    2 Responses Jul 16, 2011

    Portal Vein Thrombosis In 2009

    Hi all, I've spend a while trying to find forums for this condition and just came across this one. I am UK by the way I was admitted to hospital in july 2009 with severe stitch like pains, doctors initially thought gallstones but that was soon ruled out as was appendicitis as i...
    Jane1467 Jane1467
    41-45, F
    2 Responses Apr 26, 2012

    I have been suffering with PVT

    for over a year now. Three days ago I did two pregnancy tests as I had been feeling weak and sick (put this down to general pain and discomfort from PVT) they came out positive. Went to see a gp he was anything but helpful almost scared of my case said it is a complicated...
    deleted deleted
    Aug 8, 2015

    It's A Clot, Not A Chocolate Hangover After All

    I was recently diagnosed with a portal vein thrombosis.  I  would like to know if anyone else has had the on-going pain.  I started with the pain approximately 1 week before I was diagnosed, and despite Lovenox (which nearly killed me by dropping my blood pressure...
    OliveEwe OliveEwe
    5 Responses Jan 25, 2010

    Wow And Wow

    After a rather painful day today i decided to look and see if I could find any helpful chats about PVT, and boy have I!About 5 years ago my PVT was discovered entirely by accident. I had been having abdominal pains on and off for years and in and out of A&E, Drs always saying it...
    jmc11 jmc11
    4 Responses May 3, 2012

    I am 38 and I was diagnosed 2 weeks ago

    after going to the ER for what I thought was food poisoning. I feel like a unicorn every doctor nurse, orderly, everyone is interested in how this happened to me but no one has any answers. instead they prescribed xeralto, and oxy, and now vicodin. I have children and can't...
    chelonsc chelonsc
    36-40, F
    1 Response Mar 27, 2016

    Portal Vein Thrombosis, Polycythemia Vera And Strokes

    My story is very similiar to those found here. I was diagnosed with polycythemia in 2006. Blood tests, scans, biopsies, and fear... same as all of you reading this. The only "treatment" I had was "phlebotomies" which was basically donating blood to the dumpster to decrease the...
    Joba86 Joba86
    41-45, F
    Dec 19, 2010

    Acute/sudden Onset Of Portal Vein Thrombosis

    Before i get started i just want to put it out there so that its known, I'm not the best writer in the world. And I'm an even worse writer at 4 in the morning which is when i discovered this online support group and felt compelled to put my story up here. A little about me: I...
    geronimochocinco geronimochocinco
    4 Responses Mar 25, 2012

    Sick Of Being Sick

    Hello i also am suffering from the pain associated with portal vein thrombosis, my story starts in aug of this year, it started out with a mild pain in my upper stomach area, and then started to relocate to my right side, i found that the pain was worse about 30 min. after a meal...
    mikehatesthrombosis mikehatesthrombosis
    8 Responses Oct 13, 2011

    My 17 Month Old Son Has Pvt

    My son has PVT and as I read your posts it made me understand him better:)  He seems to be in constant pain, yet I've been told by docs that he shouldn't be in pain, from what you are all sharing, he most def. is in pain.  He has stage 4 varices on his esophogus and...
    TracyBear1205 TracyBear1205
    3 Responses Jun 24, 2010

    Help Please... My Dad Has Been Diagnosed With Blood Clot In Portal Vein

    HI, so glad I found this forum.. there is not much info on this topic. My dad was diagnosed about a month ago with a clot in his portal vein in the liver. A little background... He is 60 years old, and was diagnosed with colon cancer last year. He had some surgery on his liver...
    kerrifales kerrifales
    1 Response Nov 28, 2010

    Extensive Portal Vein Thrombosis

    Hi there, My mother (who i am very close to) was diagnosed the day after she came back from holiday. She suffered from excruciating stomach pains (which she described was much more painful then giving birth), vomiting, loss of appetite, and fevers. She was very pale and week. We...
    sarahwm sarahwm
    1 Response Jun 28, 2011

    My story started in June 2013.

    I started itching all over my body. Sometimes it was on my legs, sometimes it was on my arms but most of the time it was on my hips, torso and chest. It seemed to be worse in the morning and late afternoon, early evening. I tried everything; oatmeal baths, Benadryl, zyrtec...
    kimmcoates kimmcoates
    46-50, F
    1 Response Jul 17, 2014

    Pvt And Prostate Cancer

    While I have added my thoughts to one story, I feel it is important to share a few of my experiences here for others to read.I am 45, and my pain began in August 2011.  I made the assumption I had a bladder infection, and went to urgent care (one step down from an emergency...
    Skylardog Skylardog
    2 Responses Nov 14, 2011

    Jak-2 Mutation And Portal Vein Thrombosis

    Hi all, I just found this site after being diagnosed with portal vein thrombosis over 5 years ago. I was having terrible abdominal pain which got so bad one day that I had to be taken off an airplane in a wheel chair. My doctor originally thought it might be an ulcer, but they...
    LoriH LoriH
    1 Response Dec 24, 2012


    I had 2 separate issues with both deep vein thrombosis, then pulmonary embolism at the end of 2007and 2008. After 10 days in the hospital over Christmas, my birthday and New Years in 08/09, I followed up with a hematologist to determine cause of clots(probably hormones), but...
    bockbock bockbock
    1 Response Jan 31, 2012

    My Name Is Nick Brown Im 34 And I Have Portal Vein Thrombosis

    In September 2010 I was rushed to hospital as the doctor thought I had an appendicitis after scans and ultra sounds they found a dozen blood clots in my portal vein.None of the doctors knew what the cause of this was and after being told that im stuck with it for the rest of my...
    nickbrown34 nickbrown34
    31-35, M
    Mar 31, 2012

    Has Anyone Else Gone Through This?

    Hello, I'm deciding to write my story in hopes others will do the same.  6 months ago I was diagnosed with idopathic Portal Vein Thrombosis.  Pretty much had the classic acute version.  Stomach pain that progresslivly worsened over a 2-3 period.  Couldn...
    Kirby34 Kirby34
    33 Responses Jun 24, 2009

    Pvt I Need Advice

    im 25 years old and suffer from pvt. my doctors say i must take warfine and get on with it and it will get better on its own. i cant eat without pain so bad i have to drink morphine with in 2 minutes after. i cant go the toilet without passing blood. i just cant believe that this...
    coxy25 coxy25
    22-25, F
    10 Responses Jan 15, 2010


    Hi everyone. I just found this web site and I see there are folks out there going through what I'm going through. Makes me feel better to know that I am not alone in this battle. I had bariatric surgery done (the vertical sleeve) on april 18 2012. I was trying to do something...
    silvervallygal47 silvervallygal47
    2 Responses Jun 6, 2012

    Scared to death. Pvt

    after gastric sleeve surgery. Has anyone ever fully recovered? The stories here have me freaked out.
    Vsggonewrong Vsggonewrong
    36-40, F
    1 Response Sep 19, 2015

    So Glad To Be Here.....

    I was diagnosed in 2009 with superior mesenteric vein thrombosis. Like all of you, I thought it was the worse food poisoning I'd ever had. The pain was unbearable and the ER doctors had no clue. They thought perhaps I was HIV positive since the CBC showed my platelet count...
    Lovemesomeniko Lovemesomeniko
    51-55, F
    2 Responses Mar 7, 2012

    Pvt With Cirrhosis

    Wow. I'm so excited I found this group. I've searched the internet for ages to find information on portal vein thrombosis and there didn't seem to be much out there. I was diagnosed at the end of this year with a blood clot in the portal vein. I'd been sick for almost a year with...
    Frankie84 Frankie84
    2 Responses Nov 20, 2012

    Superior Mesenteric Vein Thrombosis - It Hurts

    All the same things as everyone else - increasing pain, narcotic pain pills not working, ride to hospital, CAT scan, better pain medicine, heparin, rare condition that kills 30% of patients, all the tests and no obvious reason for the clot, no food for 8 days, PT adjusted on...
    gpmonline gpmonline
    15 Responses Jun 3, 2010

    I Have Portal Vein Thrombosis, Splenic Vein Thrombosis & Mesenteric Vein Thrombosis

    I was so happy my friend found this blog. I was happy to find others that are going through similar problem(s). I was diagnosed with Portal Vein Thrombosis in July 2009. As many of you, I was put in the hospital for 8 days and underwent many tests to try and find the...
    ToxicCherry ToxicCherry
    6 Responses Nov 8, 2009

    Portal Hypertension Portal Vein Thrombosis - 10 Years Since Diagnosis

    Helllo, I have had portal hypertension now for over 10 years. I started a blog a few years ago highlighting the condition and the many aspects of it and you are welcome to check it out here: www.portal-hypertension.com I also have comments from fellow sufferers and would...
    Menno123 Menno123
    Jan 10, 2013

    Hello everyone, first let me tell you how

    glad I am to have found this place. I am thirty and four days ago I was diagnosed with pvt...my journey has been a long one but let me start by telling you how it began, I will try and keep it as brief as possible. two years ago I was having a routine surgery to remove my...
    beebsiebrooks beebsiebrooks
    31-35, F
    Jan 31, 2015

    I Too Have Pvt

    May 5, 2010 I was ambulanced to the hospital where after a CT scan I had over 100 gall stones in my gall bladder which caused pancreatitis which caused PVT.  I was in the hospital for two weeks with nothing to eat or drink to calm the pancreas.  Some enzyme level was...
    otten5 otten5
    1 Response Nov 30, 2010

    My Mask My Life

    Hello, My story starts in 1999 , That was one hell of a year ! First off I am a single father of two daughters. I was Married for ten years but only had two good years close to the end. In 1999 I was working as a Journeyman millwright at Proctor and Gamble. I had been working...
    bige9888 bige9888
    46-50, M
    3 Responses Oct 28, 2012

    My Husband's A Medical Mystery

    Hi everyone, Kat here from the UK. I wondered if anyone recognises my 30 year old husband's story? In September 2010 he started suffering from what the doctors thought was acid reflux. After them ignoring our doubts I came home from work to find him rolling on the floor in pain...
    katamattack katamattack
    26-30, F
    2 Responses Oct 5, 2012

    My story started in January 2014.

    I underwent gastric surgery and my Surgeon accidentally severed my Splenic Artery. I had a splenic infarction - it is now completely dead. Recovery was slow and painful... things started getting better (ups and downs) unil May where I had acute onset of extreme abdominal pain...
    MaxieFranklin MaxieFranklin
    46-50, F
    2 Responses Jul 22, 2014
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