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 Portal vein thrombosis in november...

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Iremi



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Join date : 2011-02-27

PostSubject: Portal vein thrombosis in november...   Sun Feb 27, 2011 5:42 pm

Hi! Thought I'd give this a shot.

I'm 28 years old, I'm from Finland and I got a bloodclot in my liver last november. From what the doctors told me (yes I had quite a few since the hospital I went to is a university Razz) it was quite a large one. I was in extreme pain a couple of days before I went there, I also have ulcer colitis so I figured that was the cause. Was quite shocked and in denial a looong time afterwards and it's just now setting in how serious the whole thing was. A lot of things went straight to hell because of it, had started seeing someone and that ended pretty quickly since I was in a pretty bad shape from it all, can't really train anymore (used to train karate 3-4 times a week) and I also get pretty sick from the medication from time to time. Anxious and depressed pretty much describes it. Of course there's bright spots as well...I've noticed that myself as a person has changed quite a lot and so has my outlook on things, but still can't get away from the depressed and anxious part.

I've got three months left on the meds and an ultrasound test next week so I'm hoping things has gotten a lot better...
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Mon Feb 28, 2011 12:35 pm

Hei Iremi

Welcome to LADVT, this disease and it's medication does play with our emotions, but the way to look at it is that you are a survivor and THAT is good. Many people do not realise how serious Thrombosis can be, be it Deep Vein or Upper Body or like in your case Portal. For some people just talking about it with other people that are going or have been through similar situation and knowing that they understand what you are saying, helps enormously.

Denis
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Mon Feb 28, 2011 2:43 pm

Yeah, it's been nice reading through other peoples stories. Helps alot Smile
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Tue Mar 01, 2011 7:01 pm

A small update...beginning to feel a lot better these past few days. Still hard not being able to train as I would like to but the mood has at least gone up Smile
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Tue Mar 01, 2011 10:19 pm

Yay!!!
Don't expect to have it all happen in a short period of time, it does take a long time and you need to take baby steps.
Walking is a good starter, swimming is another good activity, what you do not want to do is get your blood rushing in your vein for another two months.
You have to let the clot anchor down in the vein, so that no particle of the clot move to your lungs, yes a pulmonary embolism.

But any updates are good, stay positive!!!
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Wed Mar 02, 2011 5:42 am

Oh there's no risk of a PE for me...the clot is stuck where it is since it's on the way IN to the liver.
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Wed Mar 02, 2011 12:18 pm

Never say never...
Even with a guaranty from you Dr. that it should not happen, I have seen stranger things happen.
Suspect
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Wed Mar 02, 2011 1:20 pm

Hah...yeah I guess that's true Razz...considering how amazed they were I even had this. Never gotten that much attention from so many doctors before Smile
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Wed Mar 02, 2011 2:50 pm

From what I have read, PVT seems to be uncommon compare to DVT, so for them you re probably a novelty.
Good for them, bad for you (that you have this happen to YOU)
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Fri Mar 04, 2011 5:17 am

Well...just back from an ultrasound check-up. She said everything seemed normal...the body has started making ways around the clot now....which I hope is a good thing. Didn't really get a straight answer on that one...
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Sat Mar 05, 2011 1:18 am

cheers bounce cheers

That's GOOD news!!!

If it's like DVT, if the veins are occluded (blocked), the body will form other veins to do the work of the occluded ones... In the case of DVT those veins are called "spider veins".

What did she say about your anticoagulants, still for another three months?
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Sat Mar 05, 2011 7:11 am

No...didn't say. That was just the doc doing the ultrasound, still going to get a call from another in a couple of weeks.

Yeah, it is good news Smile. It's just from what I've been reading the new ones can either go back to the portal vein and link them together or they can just bypass the liver entirely...which would then mean anything poisonous that gets in the body can go straight to the brain. But maybe it's best to not get ahead of myself Very Happy
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Sat Mar 05, 2011 7:21 am

..or of course new ones can go nowhere at all as well...
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Sat Mar 05, 2011 3:27 pm

What do you mean by "which would then mean anything poisonous that gets in the body can go straight to the brain".
Just wondering what you have been reading, like I did say, not everything on the internet is correct...

BTW, was that an Ultrasound technician or a Dr. that told you that "the body has started making ways around the clot" and could not get anymore out of her...?
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Sat Mar 05, 2011 3:55 pm

I've just been readin around so yeah...might not be correct. Meant that sometimes the new veins go directly to the circulatory system instead of the portal system.

It was a doc...or might have been a student since she was quite young.
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Wed Mar 23, 2011 10:14 am

Weeell...a small update. Doc called today and they will be keeping me on the warfarin because the risk of a relapse is too high. The clot hasn't gone anywere but the new veins have made sure that the bloodflow to the liver is good again.

Still have some problems with training though...have been taking it easy but it does start to hurt a little bit afterwards. Which sucks a little but...
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Sun Sep 25, 2011 6:52 am

Figured I might as well update this.

Feeling a lot better now, had a check up this week and the clot was gone. Some "damage" on the portal system though. A few collateral veins somewhere close to the spleen and of course the spider veins in the liver as well. Still hurts from time to time but it's not that bad. Other than that I'm feeling better than I have in years Smile...
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dero
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PostSubject: Re: Portal vein thrombosis in november...   Sun Sep 25, 2011 7:01 pm

Thanks Iremi for doing so.
It's great to hear from people that have been here before. The thing it also does is show people that are just starting out with DVT, that it isn't all "gloom and doom". That it does get better after a while...
I remember when I had my first clot, for the first 3,4 months I thought that life as I knew, was over, it is not the case.
Sure I'm a lifer on anticoags and Fuglies but I am resuming that life I knew and enjoyed.
So, YAY Iremi cheers
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AtlantaRacer



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PostSubject: Re: Portal vein thrombosis in november...   Sat Oct 01, 2011 2:49 pm

New to this website, and glad that I found some stories. It does help. I am 47 years young, long distance runner, biker -- just got diagnosed with DVT this weekend. Story is the same, constant swelling of ankles, knees, and i always blamed it to running and travel etc. I also travel for work, but most flights are 2 hours or shorter. Have taken couple of 5+ and one 12 hour flight this year as well. Anyway, my case has been very classic text book like. Luckily, I have doctor's in the family and I called one of them at the last moment when I was at a different hospital waiting for V-QC test (could not get Catscan due to serious shellfish allergies). I listened to my nephew (who is a Vascular surgeon), went to his practice, they did the ultrasound and bamm...found the clot in the left leg. They wheeled me to the ER, few more tests etc etc. My clot in the left leg has been partially broken and is somewhere in the lung, that explains why I sucked during my last 2 races (and I mean sucked). It also explains why i have been straining for breath during my last few runs, and I blamed it to asthma, extreme hot weather in Atlanta etc. I have been seeing Podiatrist, Primary care physician, chiropractor almost regularly, and everyone was trying to cure the symptom and not the cause. I am glad that primary care doctor finally ordered the blood clot test, which came out high. Lesson learned - listen to your body and do what feels right, and be informed.

I am now taking Arextra (stomach injections) for 3 more days until Coumadin kicks in. I had signed up for ultra running on October 9th, and for few more races in November - but have to put a hold for now. .., this is just a small hurdle (clot) in the life mates. I will keep you up-to-date on my progress, and can't wait to give you an update on my "first" run.
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Wed Oct 05, 2011 1:36 pm

Dero: Yeah that is quite true...somehow I'd say it's gotten turned around to a beginning instead. Sort of spending less time with the musts and more time on the "me".

Got the news today that I'll be on bloodthinner for life though. Some of the veins had formed a little badly since the last check up so if I quit it'll probably just clot up again...might be a little my own fault since I had a little hard time taking it easy sometimes but that I'll never know so no reason dwelling over it either. The doc still said to just live as I always have. Might start looking in to alternatives to warfarin though...
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AtlantaRacer



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PostSubject: Re: Portal vein thrombosis in november...   Sun Oct 09, 2011 10:01 pm

I had said that I will give an update on my first run. I have been now on meds for 10 days, going for blood test twice a week, and blood is thinning.
Beautiful day today and i went for a light yoga exercise and then for a short run (less than 2 miles). Heart felt good, left leg got little bit sore so I walked towards the end. But I was glad to be out there. It is a progress and I am very pleased. Hang in there...
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Mon Oct 10, 2011 4:46 am

AtlantaRacer wrote:
I had said that I will give an update on my first run. I have been now on meds for 10 days, going for blood test twice a week, and blood is thinning.
Beautiful day today and i went for a light yoga exercise and then for a short run (less than 2 miles). Heart felt good, left leg got little bit sore so I walked towards the end. But I was glad to be out there. It is a progress and I am very pleased. Hang in there...

Corret me if I'm wrong, but you should really not be running or going for yoga right now...especially not running. If you still have a clot it can get to your lungs once again. You were very lucky that it didn't get worse than that the first time. Of course if the doc says otherwise, go for it but I'd say it's kinda obvious that it's a bad idea.
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Thu Oct 27, 2011 4:45 pm

One last small update: Ah...seems the doc was wrong. The clot IS still there...well doesn't really change anything if it's there or not I guess Smile...
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Iremi



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PostSubject: Re: Portal vein thrombosis in november...   Tue Feb 19, 2013 7:07 pm

Well it's been over two years since I had my blood clot. For some reason I thought of this place again. Doing pretty great, finishing school and still training karate. I do still take warfarin though since the docs thinks I'll just get a new clot in the "new" blood vessels. Check up once a year as well.

I have recently been thinking if it's a good idea to keep training. We don't do contact but accidents do happen...actually got my first bloody nose a couple of weeks ago. One in five years. Still, did get me thinking a little. It's not something I'd like to give up though.
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