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blood clot in portal and superior mesenteric veins
i am a 32 year old female who was diagnosed with portal vein thrombosis and smv thrombosis in october 2007. i am trying to find anyone with similar diagnosis or experiences to discuss condition with. i have been told this is pretty rare and so far have been unable to find anyone out there on other message boards. feeling pretty much all alone any info is appreciated
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I'm not sure these people on still on the board, but check here: http://www.robprince.net/dvt/forum.asp?action=list

When you get to the site, look in the late January dates.

Also, check for support boards for DVT - deep vein thrombosis. Sometimes people go there because they're not sure where else to post.
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thanks for the info! unfortunately still having trouble finding people who have a blood clot in same area. i really appreciated your help though
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I,m 28 and have thrombosis of the superior mesenteric vein.   found problem 3-16-08. still trying to find why.
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might be better to get at Paul_80proof***@****
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then end was at yahoo
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My boyfriend is in the hospital now, 1 week so far - diagnosed with portal thrombosis, a blood clot in the portal vein extending into the splenic and mesenteric veins.  It's been awful.  It started about 3 days before hospitalization, with pain in abdomen, just under rib cage.  A visit to the Dr. office for blood tests confirmed elevated liver enzymes. Assuming it was galbladder, Dr ordered CT scan @ hospital and when finding something questionable, they followed with an ultrasound which confirmed the blood clot.  He was hospitalized immediately, and given heparin and morphine for pain in which he got sick on.  Finally, given heparin, coumadin, and strong doses of vicaden he was able to get thru the pain.  Abdomen swollen and sore.  Can't eat much, nausea...  The pain killers caused him not to be able to eliminate so he was given a catheter and suppositories.  It's been a long week with not much information as to how he got this, why he got this, he is normally a healthy active guy of 54 years old. Never been in a hospital before!
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Just discharged from hospital a couple of days ago. Admitted thru ER after several days of severe abdominal pain (just under rib cage), nausea & vomitiing. Diagnosed with clot in superior mesenteric vein. Given Heparin, morphine and since release on coumadin. Must be monitered while on blood thinner and will return to hospital for another CT-scan. Scary. Doctors have no answrers as to why, however I did have gastric bypass sugery 3 years ago...connected?
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I hope you are on the mend.  Your symptoms are identical to my boyfriends, he is still being monitored and on Coumadin.  He ended up with a bad case of gout shortly after being released from the hospital and it's still acting up a bit.  Weird.  He still has the blood clot, he can feel it, but he is not in severe pain any longer.  Hopefully the Coumadin will dissolve the clot.  They said it could be 6 months.  It's been 2 1/2 months so far. Good Luck, and Get Well.  
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i have just had this, i have a blood clot in my portal vein, which they do say is rare and of course no idea why i got it, the ultra sound never pick it up....a ct scan in the er was the only thing that found it.....spent 6 days in hospital on morphine and warfarin, discharged on warfin and pain meds, but would like to know how long it is going to take till i feel better.......
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A ct scan with an IV contrast (3/15/10) found I had multiple blood clots in the portal vein. Further tests showed the cause to be a hereditary blood disorder called gene 5 mutation. It is pretty complicated to fully understand. The ct scan showed (fortunately) no cirrhosis or other damage to the liver. I have been to two hematologists and the dr I am crrently seeing has me on 2 injections of 60 mg lovenox and 5mg of coumadin daily. I am to get my blood tested today, my pt/inr #'s have been low (1.1-1.2). Dr said it should be between 2-3. I am scared and am consumed with confusion about all this. It is very hard for me to watch my intake of vitamin K veggies and alcohol. I am a 50 yr old woman in otherwise good shape and condition. But I do (or did) drink alcohol on a daily basis as well as ate all the veggies not allowed daily. I was told no alcohol or veggies w/vitamin K. This is a VERY big change to my daily lifestyle and would like anyone else's suggestions who may be going thru the same or know another who is. Also, the pain is constant, does it ever go away?
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Hi CalGal,
I was diagonsed with portal vein thrombosis in Jan this year ,Was in hosptial for 2 weeks and put on to warfarin for 12 months .
I went on the pill around december time and the docs think that was the cause of the thrombosis.
Its been about 6 months now i just had a CT scan with the dye last week and the clots still there my consulant has said that it might not ever go .. im really worried but i cant chnage it .
When i first went in to hospital i was in severe pains they have eased off now but if i over do it then the pain will kick in again and ive got to take my strong pain killers and up all night .:(

Hope to hear from you soon

S
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Dear Akabler,
I was taken into hospital 3 yeas ago with a blood clot in the mesinteric artery. It was called ichaemic colitis. I was in hospital for  days and the clot had to flush through on an IV. Thankfully I didnt end up having surgery.

I too was told it was rare, but I have had other clots over the years, so nothing suprises me any more.

Best Wishes
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My best friend (25 yrs old) has recently been diagnosed with 'portal vein and superior mesentric vein thrombosis with chronic thrombosis of the inferior vena cava' she also has 'factor v leiden heterozygous'. she has just been declared disabled and is no longer allowed to work. Im trying to work out what this means for her in the long term, ie mortality and morbidity rate and also the chance of her being able to have children.
I would appreciate any replies, many thanks.
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lso had thrombosis in my portal vein and two in the mesenteric vein (one anterior the other posterior)  Mine occurred in August of 2007.
As above I went to the emergency room  with extreme pain in my upper abdomen and bottom of my shoulder blade. Was hospitalized for 9 days and put on heparin, and morphine.
I did not have any type of cancer, lupus, liver or gallbladder problems although my liver enzymes were a bit high at that time.
I was tested by a Hematologist and diagnosed with "acquired protein a resistance" A hereditary blood disorder. I am not able to take any type of hormones (birth control, hormone replacement therapy etc) I will need to ensure I am constantly hydrated (lots of water which is good for a body anyway) as the risk for getting clots again is quite high. I also need to ensure that I do not sit at a desk or stay stationary while traveling in a car, plane etc. for long periods of time. I am at a very high risk of recurring clots for future surgeries.
My family all were tested and so far they are all free of the disorder except for my daughter. So, as a word of advice maybe check to see if it is a blood disorder. If hereditary it may be worthwhile ensuring your family members are also tested.
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Factor 5 Leiden gene mutation is the most common hereditary hypercoagulable disorder in the U.S. What this means is that your Factor 5 (which is part of your clotting cascade) cannot be broken down so clotting is left partially unregulated. If you get one copy of the gene passed down from your parents you have 4-8 times more of a chance to have a DVT or venous clot and if you have 2 copies then it is around 80 times more of a chance to have a clot. Most people are put on an anticoagulant like Warfarin (Coumadin) to decrease the chance of clotting. Patients are also asked to not go on long plane trips and to avoid things with excess estrogen and progesterone like birth control pills because these things cause an increase in clots too. Vitamin K is avoided in the diet because it counteracts Warfarin and will cause it to not work. Anytime a clot is found in uncommon parts of the body and in patients of younger age it is important to look for genetic cause of hypercoagulation.
- 2nd year med student
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I am  a 30 ur old male who had portal vein thrombosis 2 years ago. My vein was 100% clotted. After 3 emergency surgeries and being in ICU for 10 days my life was saved. They also did TPA infusion on me. I currently take coumadin and will have to stay on it my hole life time. I would be happy to share more info with u. U can contact me at ***@****
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I'm 32 male its been 3 years since I had a blood clot in my  smv.   I don't know why i got the clot.  It would be nice to talk with someone with same problem.  doctors put me  on blood thinner rest of life .  I would be nice to know what caused it.         You can email me so we can talk.     Paul_80proof              yahoo.       com
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I just left the hospital with the diagnosis of SMV thrombosis. Mine seems to have been a result of the emergency laparoscopic appendectomy I had a week prior to my readmission to the hospital. I have a follow up with a Coumadin clinic in the morning to start my 6 mo regimen.
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I had a sigmoid colectomy removal on October 15, 2014 and spent 4 days in the hospital. My recovery was on schedule until about 11 days later. I had this ripping/tearing back pain that was 4/10 pain. A few days later it was 10/10 back and abdominal pain. My wife told me my face was white as a sheet. Went back to the hospital on October 30, 2014 and was diagnosed with PVT. They started me on Heparin and I was NPO for 51 hours. They switched me to Lovonox injections and Warfarin after a couple of days. I was released after 4 days and currently taking Warfarin. They want me on this stuff for 6 months. I will have another ultra sound in March and my hematologist stated he would take me off Warfarin if the clot is dissolved. It's a nasty drug, but I guess keeping me alive. I don't let this condition keep me down. I've been running about 10 miles a week and lifting weights. (nothing too heavy) My doctors are baffled that I have this rare and uncommon clot. And there is not too much information regarding this condition. Are there any PVT support groups out there?  
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My husband, aged 27, had sever abdominal pain 8 weeks ago.  I took him to the ER where they found appendicitis and superior mesenteric venous thrombosis.  They put him on heparin, took out his appendix and kept him for a few days.  They released him on Coumadin.  10 days later we were back in the ER.  CT scan showed the clot got worse.  They put him on Lovenox.  All was well for 4 weeks when he had severe pain again in the upper abdomen and under right rib cage.  A CT scan showed new clots in his right and left portal veins.  I am told he should not have made new clots while on Lovenox.  He is negative for all genetic testing and every other test they ran.  He is otherwise  healthy.  They say his organs look fine right now and they put him on Arixtra.  After he was able to go without the IV pain killers, they sent us home.  This is where we are with no answers and a lot of pain.  Does anyone have any recommendations on a doctor that we should see?
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