Months in hospital got blood clot from port site in jugular now I got one in my huge leg lol...

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Date Joined Mar 2009
Total Posts : 318
   Posted 5/24/2010 9:54 AM (GMT -7)   
confused  So I have not posted in a long time cause I just got out of hospital after 3 months and first things first went to ER and got my port accessed and had chest pain with in 30 mins they didn't believe me till my neck swelled up the size of my head,they did a CT and Doppler's and found the blood clot the port she put in was the wrong size and she tried 2 force when night shift came on they had 2 take it out and put in another cause my veins were all done working years ago....I was booked 4 surgery the next day and I was speaking 2 the surgeon that morning and I said so your taking out the clot he said what clot he didn't even know nor did he check my files,,,he says no u have 2 go 2 the OR cause u have a really bad infection in your neck and between the chest wall it could b a afesheitis I was horrified 2 say the lest but all turned out good the next day back 2 the OR 2 get port out and a new central put in I loved my port lol....So I went 2 the hospital with repeated bowel obstructions and didn't eat food by mouth for 2 and a half months just TPN 2 build me up 4 my big surgery in the city...I was on blood thinners @ this point 4 about 1 month and a few weeks...Surgery was booked 4 last month a double bowel resection and a triple hernia repair waking up in ICU I was also sepsis...Finally I get 2 come home but I keep getting bad pain in my chest and shoulder and down my arm on the left side which is were the clot is,,,I still have the pain but there r tests booked 4 that so I was happy..So my foot started swelling and than up the left leg another CT showed another blood clot in the leg I can't take much more of this really I can't...I was told as long as I was on the Warfarin there was no chance I would get another one and its 3 months 4 the one in my neck and that is still there 2????Anyone had the same problems with clots I'm a little scared of taking a stroke or worse a heart attack my mom had 2 my aunt just had a triple by pass and so on....Please is anyone has any info on this matter I would greatly appreciated....Jenn (AKA onthecan) Lost And Swollen Lol.... cry cry cry cry cry cry cry cry

Post Edited By Moderator (Nanners) : 5/24/2010 12:34:35 PM (GMT-6)

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 5/24/2010 10:49 AM (GMT -7)   
Jenn, you poor thing. I've had known of the problems you're talking about. Although I've had central & Picc lines
in. I can imagine how frightened you are. I guess the only thing that would make me relax, would be the fact the
doctors don't seem to be showing too much concern. Usually I would worry about lack of concern, but in your case
hopefully it's good thing.
Sorry I can't assure any further than that. I wish you the best of luck!!

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

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Date Joined Dec 2005
Total Posts : 1768
   Posted 5/24/2010 5:41 PM (GMT -7)   
I had blood clots go to both lungs in October, and went home feeling really freaked out, knowing they were still there. After 6 months of warfarin, mine went away, and (knock on wood) haven't returned. In my case they never figured out where the clots came from. I still get chest pain where the clots were every now and then, especially if I do a lot of strenuous activity. My doctor said it's normal for pain to last since the tissue was damaged. Also, I had pneumonia at the same time, so that's why I have scar tissue that he says might take some time to fully heal. Also, usually patients are put on warfarin for at least 6 months because in some patients it does take that much time for your body to dissolve the clot.

That being can get clots while on warfarin. It is more rare to get them on warfarin than to get them while not taking a blood thinner. My sister's friend is on warfarin and still gets clots every once in a while. She and her doctor are looking into another drug (don't know what it is as I haven't had to take it) that might help her better.

Are you seeing a hematologist about the clots, or who is treating you for them? Maybe you should talk to them to see if there is an alternative therapy (drug) that might work better for you.

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

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Date Joined Jan 2003
Total Posts : 6131
   Posted 5/25/2010 3:12 AM (GMT -7)   
got me an inch long one in my right jug . been there about a year. its growing new vein tissue around it and walling it off. i cant take pill wafarin cause of my noguts, so i had to do very painfull shots every day for 6 months.. they said going in to take it out would be more dangerous and could cause a piece to break off... sid it was too big to cause a storke , that it would kill me instead so dont worry. you wont even know it they said. great huh?

New Member

Date Joined Apr 2014
Total Posts : 1
   Posted 4/14/2014 11:39 AM (GMT -7)   
My mom had a port put in for her chemo on March 11th @ 7 am. She was dead by 2 am March 12th due to a thrown blood clot from the port. shakehead skull
I miss her so much!! just wish I could have her back cry cry

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Date Joined Nov 2003
Total Posts : 7122
   Posted 4/14/2014 3:13 PM (GMT -7)   
jabates40 - I am so sorry for your loss. It is so very painfully to loose a loved one. You have my deepest sympathy.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
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