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Blood Clots and Blood Thinners (Anticoagulants)
A Patient's Story
by Lillian Juodis
January, 2013
Here's my story. I hope it will help someone else or at least quiet an anxious time in their lives.
At present, I'm a 67 year old female, in good health.
April of 2008, I was diagnosed with a clot blocking the hepatic vein in my liver. "Blood thinners" (anticoagulants) for six months were the only solution. There was an incredible amount of pain involved. But the liver managed to recanalize itself and life went on.
From January, 2010 to March 2010, I had been experiencing abdominal pain and made four trips to the emergency room. During the first visit, at the end of January, the doctor in the ER wanted to do a CT scan. I refused it (too much radiation).
In March, I was totally debilitated. The only food I could eat was 2 tablespoons of broth and I was full. I had not had a bowel movement for about three weeks. Back to the hospital I went, writhing in pain. Moaning and groaning aloud. Twice I was sent home, constipation being the diagnosis. Finally, at the last visit, a third doctor sent me for a CT scan, whether or not I liked it. I was in so much pain at the time, I wouldn't have cared what was done. The results were very frightening, indeed. Blood clots in my liver, spleen, mass in the pancreatic head, clotting in the superior mesenteric vein, with the colon walls thickening to 1.4 cm. As no one had dealt with this before, I was told they had no idea how to treat me. I was on morphine. Many doctors of different specialties came to see me. No one had a solution. "Blood thinners" had been started again. Thank goodness for a healthy heart and good arteries, I was told.
Finally, an internal specialist was advised of my situation and put me on TPN (total parenteral nutrition, which is nutrition support by vein). He sat at the end of my bed and said "We're going to beat this." I was hospitalised for five weeks. On April 1, 2010, I had the results of a follow-up CT scan. April 2, was my 65th birthday and I was given the good news.
I'm on "blood thinners" for the remainder of my life. No apparent reason for this condition was found.
I then went to see a hemotologist in Vancouver General Hospital where I learned so much about managing my own dosages, raising or lowering it, how my medication would work for me. I take 16 or 17 mg per day to keep my INR between 2.5 to 3.5. I never needed surgery. Also, I have downloaded the lecture of Dr, Mark Reading (pronounced Redding). he did a whole series about clots, their cause and care. I read everything I could about the condition as I had decided to make it my companion, as opposed to an enemy, over which I had no control. I also monitor the results of my own INR, online and learned from the best, how to adjust my meds accordingly.
The psychological impact is almost as daunting as the diagnosis. Don't think the road back to "normal" was easy. Of course, fear, is the greatest enemy. I had nightmares, at times, couldn't sleep and had to struggle against a foreboding thought that I wouldn't survive this. That each day was my last and even now, occasionally when a strange pain is felt, my brain questions what it is.
But here I am! It's over two years ago now. So if any of you have the same problem, know you can recover from this. TPN and "blood thinners." Surgery, if required. (In my case, they didn't know where it began and didn't want to start operating without knowing why).
All the best to all of you. Keep well.
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