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Bleeding and Clotting Disorders

Testing negative for blood clotting disorders

02/17/2009

Question:

I am 46 years old. I first had multiple pulmonary embolisms in 2000 10 days after having my appendix out. It was felt that it was because I was not as active as I usually am. The doctors ran a series of test on me to ensure I didn`t have a blood clotting disorder and they all came back negative. When my daughters became old enough to start thinking about birth control they were tested and came back positive for Factor V Leiden. In May 2008 I broke my left wrist and 10 days later while my fore arm was in a cast I developed a DVT in my upper left arm, above the cast - the doctors were surprised it was above the cast as the cast actually was split on the sides because of the swelling in my wrist. In November 2008 I was sent for an Ultrasound of my left arm to see if the blood clot had disolved but it has not. December 2008, I was admitted to the hospital and needed to have emergency gynecological surgery for passing large clots, I was taken off my warfrin and put back on the heprin shots. They were unable to start an IV in my arm due to small veins and so the anetheasologist started one in my right foot by my ankle. After the surger and a 5 day stay in the hospital, I was sent home - the doctors decided that since the gyn. bleeding stopped, and the heamatologist felt that the blood clot in my arm was not a threat as they rarely break off and go anywhere that I no longer have to be on any cumadin. A couple of days after being discharged, my right foot where the IV was, was sorer than it had been, I went to a clinic and the doctor told me that I had a blood clot in a superficial vein caused by the IV....but not to worry they never break off and cause problems....but this clot over the next 4 days worked its way up my leg all the way up into my groin - I could trace it all the way from my foot to my groin, and it was espeically sore at certain points. On December 24th, I had my second ultra sound on my leg and the technician who performed the ultra sound had done one a week earlier told me that he had told me before that I didn`t have to worry, nothing ever happens from a superficial vein. On January 1, I was talking to my mom on the phone and I was very out of breath, I was telling her that for the last couple of days that I couldn`t even go up the 4 stairs from the front door with out having problems breathing. Going down to do laundry was out of the question. If I bent over to pick anything up, I felt like I would pass out. My mom told me if I didn`t call an ambulance she would. In emergency, the doctor I had sent me for a chest x-ray and then decided to send me for an mri with contrast. Unfortunately with the problem they have starting IV`s on me, the IV was in such a position and was so tiny that the technician in the MRI lab refused to put the contrast dye into the IV. She called her supervisor who agreed with her, saying they would "blow" the IV site. They agreed to put only a small fraction of the dye in my IV in and it was enough to see that I have multiple pulmonary embloisms in my lungs. I spent the next 10 days in the respitory unit at the hospital being put back onto cumadin. I will now be on cumadin for the rest of my life. They also did run the series of tests on me to see if the last time I was tested to see if I have some sort of blood clotting problem and the last time it was a false negative but it also came back as a negative. To add to all of this I have MS and the drug that I had been on for the last 4 years (REBIF) is a drug that can cause bleeding so I am now not taking a drug for my MS until they find which one they want to put me on again. The doctors are also concerned as I need to have a hystorectomy as well as my wrist that I broke didn`t heal properly and needs to be rebroken and a plate and screws need to be put in to try and straiten it - but the doctors are concerned about causing more blood clots.

No one else in my family has had a problem with bloodclots, although my father had a stroke after surgery to clear his veins. Is there an avenue my doctors perhaps have missed? Something that they may have not thought of? I have never smoked, don`t drink and was not on birth control pills or any other drugs.

Confused in Canada..

Answer:

While it is not possible to address the specifics of you particular case in this forum, there are a couple things that I can tell you that might help out.

Clearly you demonstrate a predisposition to getting venous blood clots, despite the fact that it appears most of your testing for inherited causes of blood clots have been negative. There is a significant number of patients who demonstrate this susceptibility, but no obvious genetic or inherited cause can be found.

There are also a number of factors such as hormones, surgery, cancer, trauma, immobility, and pregnancy, to name just a few, that can increase the risk as well. I would encourage you to discuss these issues with your physician to better answer your questions.

If you have not seen an expert in venous blood clots (typically a hematologist or pulmonologist), I would also encourage you to do this as well.

For more information:

Go to the Bleeding and Clotting Disorders health topic, where you can:

Response by:

Spero R Cataland, MD Spero R Cataland, MD
Associate Professor of Clinical Internal Medicine
College of Medicine
The Ohio State University