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 Another newbie - slightly different twist

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Justmartha

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PostSubject: Another newbie - slightly different twist   Sat Jul 19, 2008 2:50 am

I've been reading a fair bit on this and another thrombosis forum, and it sure is good to read other folks' stories. Mine is a little different, and I have found very few references to it outside the more scientific web sites. It would be nice to find others who have had similar experiences....

Up until the first of June of this year, I considered myself a healthy, active, average middle-aged person. June 1 I woke up thinking I had the stomach flu.....nausea, fever, chills, etc. I couldn't keep anything down - most unfortunate since I had to cancel a party we'd planned that evening to celebrate the start of my husband's sabbatical - he was heading out of state for several weeks of research. The next day I sent him off - I thought I was improving until I got to work and couldn't even fill out a leave form I was shaking so badly. Tried to get into a doctor, but you can't get walk-ins in this town, and I figured the ER was for really sick people - not just stomach flu! This continued for a few more days. I finally did get to see a doctor, and she sent me over to the ER to check for a possible appendicitis.

They did some examinations there, did an ultrasound, and thought maybe I had gallstones, so I went home with percoset and instructions to return if I was using too much of it for pain management. Well, by the following Sunday - three days later - I was feeling bad enough that when my sister called from out of town (thank God) and told me to go back and not wait another day, I drove myself into the ER. That time, they took it seriously - fever, high white blood cell count, serious dehydration, pain, and - after a CT scan, they discovered I had significant thrombosis of the superior mesenteric vein. This is a kind of DVT you hear very little about. Anyway....I won myself an ambulance trip to a larger regional hospital and 7 days in there, doing rounds of heparin, fluids, two days of no oral food or water, antibiotics, pain killers, and of course more tests. When I arrived at 2:30 am, the admitting doc told me she had never seen a hematologist order as many blood tests - I think I donated 14 vials of blood that night alone.....had all manner of IV's attached, got another CT scan, blood draws at least once a day, and a surgeon visiting me every day to try to decide if they needed to operate. They never did decide if I had an appendix involvement, and at some point I suspect there will be some kind of exploratory look-see because every CT scan report says the appendix looks vaguely inflamed but is hard to image 'cause it's hiding behind some other body part. But none of my pain symptoms ever matched classic appendicitis. Lovely. Wish they'd just take it out.

Since I've been home, I've kind of been on that post-DVT roller-coaster. Trying to get INR right. Trying to find out why this happened. Overanalyzing every little weird feeling.....I did wind up spending one more night in the local hospital (last Friday night - what a way to get your Friday ya-ya's) more blood tests, and also got two more CT scans - chest and abdomen both because of some chest pains I was having plus some excruciating muscle spasms where I could barely breathe. The good news - heart and lungs are clear, edema in the abdomen is going down, I'm getting collateral circulation building up now, and appendix is less inflamed-looking than the original scans showed. Bad news - I still have the occlusion in the mesenteric vein. Since the original incident, I'd had a few episodes of mild fever/chills, and tiredness. They sent me home this time on a course of antibiotics and a change of plan w/INR to keep it a little higher than originally suggested - we are now shooting for 3. One doctor theorizes I have a walled-off infection in the appendix that occasionally leaks a little and causes the WBC spikes & fever, while another doc claims she's never heard of chronic appendicitis.

Hematology found I have heterozygous Factor V Leiden, one other genetic factor I cannot remember, plus acquired factors of anticardiolipin and lupus-like inhibitor. He seems to think this would be enough to cause the thrombosis, which I find comforting since many web sites will say that cancer is also implicated in SMV thrombosis in a significant number of cases. They did a lot of different cancer marker tests which all came out okay. Interestingly, the hematologist told me 6 months to a year on coumadin, while every other doctor who has looked at my charts and tests just looks up at me and says, "Did they tell you you'd be on coumadin for life?"

Of course I also got the lecture about avoiding risky sports - including horseback riding. Since I ride every day of my life practically, I am having a hard time accepting that one. I figure I'll compromise.....I always wear a helmet, and I'll stay off the youngsters until they are better-trained. To be honest, so far I have not had that many days until this week that I really felt like I wanted to ride or do much that required effort. So strange for somebody who previously was a yogaphile and serious rider. I've seen a few articles and posts about effort-induced thromboses and I have wondered if maybe the fact that both yoga and riding require serious core muscle workouts somehow also set me up for this. Who knows?

Anyway, enough of this saga.....mostly I am wondering if there are others out there who have had more unusual DVTs......and what your experiences might have been. It's a bit lonely, and sometimes a bit scary!
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brendablackburn

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PostSubject: Re: Another newbie - slightly different twist   Sat Jul 19, 2008 6:57 am

Hi,

Welcome and thanks so much for sharing your story. Wow--what a story, with the unusual DVT site, and all the factors that were confirmed. It sounds like a very trying time since June 1. Sorry to hear what you've been going through. It's unfortunate that we're all here, but I'm glad we are all here at the same time... because sometimes I feel that no one else could possibly understand what I'm/we're going through.

Even though it's a different exact situation, I can sure relate to the post-DVT roller coaster, as I'm sure everyone here can. I've felt scared and lonely too, as well as shocked, confused... you name it.

How are you doing today? I hope you are feeling better.

Hopefully someone here can help, and be able to relate to more specifics. Actually, when I was in the hospital outpatient program after diagnosis, I met another gal who had an extremely unusual DVT. She did not know the name of the vein, but said it was in her stomach, much to the surprise of the hospital staff. I asked her if she was sick/nauseous, but she said no, that it was more of the pain, cramping... it sounded much leg DVT cramps the way she described it. So obviously very different symptoms, but perhaps sharing a more common area at least. I wish I had gotten her contact info... I gave her my card but haven't heard from her yet. Maybe I can email the Outpatient Coordinator, and pass on the forum's website, should she speak to her again... though it might be doubtful.... but definitely worth a shot if you like!

One of the members of this forum is Annemarie... another horse rider... it is her life! It sounds like you might have quite a bit in common! Aside from our "condition" (not sure what to call it really--don't like "illness" as one Dr. called it), it's amazing how many commonalities many of us share. It's nice to be able to relate and I've only been here a few weeks (since my diagnosis and finding it), but everyone has been great, and have supported me through my journey. I hope we can attract more members because I think "dero" did a great job setting it up... and I love the resources (I re-refer to all the time), and the format.

Thanks again for sharing your story, and I look forward to chatting anytime.
Have a great day, take care, and glad you joined us.
Brenda
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dero
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PostSubject: Re: Another newbie - slightly different twist   Sat Jul 19, 2008 4:22 pm

Hi Martha,
Like Brenda said, welcome to the place we all, don't want to be,but don't tell anybody else but it's an elite club, we call it The Survivors Club.
Yes you are right in saying that your DVT is highly uncommon, I had to do many searchs to fully understand what you were talking about...
Where is the superior mesentric veinbut after seing it's location, I understood more...
Well ,thank you for joining "Life After DVT" and educating us and telling us "Your Story".

scratch Ok,so that brings the count to three from the equestrian world,
four from the bike world, we all are learning that DVT has no prefferences, being active or not, young or old, female or male no such patern.
As you can see many are here with their own experiences, ready to help one and all and some have been around with DVT for a bit more then others, we have been there, know of the fences and barrels you will have to jump over, let us help you whenever you need a hand.

I have to make it very clear that nobody here is a doctor, all of the information is gathered from our own DVT experiences, they are to be taken as ADVICES and not professional prognosis.
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Justmartha

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PostSubject: Re: Another newbie - slightly different twist   Sun Jul 20, 2008 8:11 pm

Thank you for the welcome.

It has sure been a learning experience - everything from the post DVT feelings to the "why can't I ever get my INR stabilized" issues. I am feeling much better - a whole lot better than I did when I first got out of the hospital. This last week has been the best so far - I am not sure why but I hope it keeps up. I got brave and rode one of my horses today, so tomorrow I'll see how I feel. I was happy to see that there are a few other dedicated athletic types on this list - that has been a real interesting find. Funny, but I always sort of associated blood clots with people who didn't do a lot of activity. Another stereotype bites the dust. Anyway - I am not a real big poster, but I will keep an eye on the forum, use it to inform myself, and of course, be very curious to see if any other mesenteric vein DVT's come out of the woodwork now that I've posed the question.

Martha
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dero
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PostSubject: Re: Another newbie - slightly different twist   Sun Jul 20, 2008 10:37 pm

Martha,

One thing would be nice, if you could reccomend any sites/forums that has good info on Mesenteric Vein DVT we could add it to our archives, seing that you are the specialist on this one, we'll have to talk...

Take care of yourself, and PLEASE,don't go bumping your head on a ride...
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Justmartha

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PostSubject: Re: Another newbie - slightly different twist   Thu Jul 31, 2008 8:23 pm

dero wrote:
Martha,

One thing would be nice, if you could reccomend any sites/forums that has good info on Mesenteric Vein DVT we could add it to our archives, seing that you are the specialist on this one, we'll have to talk...

Take care of yourself, and PLEASE,don't go bumping your head on a ride...

I've been meaning to reply for some time.....I have not found a whole lot of discussion on the web related to MVT, but I will start trying to accumulate a few links and see if I can contribute something here. One thing I have discovered is that a lot of the time it seems to lead to intestinal infarction so I think I am lucky - very lucky - that I have avoided that. Or I guess I have, since I'm still walking around amongst the living. Anyway, if you Google mesenteric vein thrombosis, it almost always leads very quickly to sites that discuss mesenteric ischemia in fairly dire terms.

The following link and it's children are probably among the most useful that I have found yet.

http://www.emedicine.com/med/topic2753.htm#section~Introduction

Unfortunately a lot of stuff is buried in medical journals that want money. If you go to any of those "describe a symptom" diagnosis type web sites, they will never have mesenteric vein thrombosis as a cause of abdominal pain!

http://radiographics.rsnajnls.org/cgi/content/full/22/3/527?maxtoshow=&hits=10&hits=10&resultformat=&fulltext=mra&andorexactfulltext=and&searchid=1&firstindex=10&resourcetype=hwcit

http://www.aic.cuhk.edu.hk/web8/acute_mesenteric_ischaemia.htm#Mesenteric%20vein%20thrombosis

Later,
Martha
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