Living with Chronic Blood Clots

By Martin Lemieux, Guest Columnist

My story starts when I was 18 years old, almost 20 years ago, when I had my first deep vein thrombosis (DVT), a blood clot in my lower left leg.

At first doctors thought it was due to a back sprain that had forced me to lie down for a long period. But when I started getting a blood clot about once a year thereafter, they investigated further.

When I was 21, I was diagnosed with Factor V Leiden – a blood clotting disorder – which meant I would be prone to clotting for the rest of my life. At that age, it was a scary thought. I knew people died from blood clots every single day and I later learned that clots are the third leading cause of death by disease.

My mom was especially afraid for my well-being and would constantly want me to be careful. But being extra careful all the time isn't living; it's like being in prison for the mind.

About 9 years ago, a reddish/black round spot appeared on the ankle of my left leg. After a physical day of work, I came home, took off my work boots and this spot ripped off with my sock, causing a great deal of pain and bleeding. Panicking, I went straight to the hospital. Even after extensive tests, no one had any answers. I was given outpatient wound care, which went on for awhile.

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The wound itself became larger, more inflamed and caused a great deal of pain. I was referred to a leading dermatologist in Canada, who determined that these chronic wounds could be due to a condition called Rheumatoid Vasculitis, a diagnosis that later proved to be false.

Not knowing for sure what is wrong with you is hard to go through, especially when answers are swirled around you for years. My family took it the hardest, since all they wanted were some answers that might one day help heal my wounds.

Any form of Vasculitis is rare. I was treated with prednisone for almost two years with no effect. I didn't want to be on prednisone anymore because of the major side-effects and the fact that my wounds were not healing. My specialists agreed, which raised the possibility that it could be another even rarer condition called Livedoid Vasculopathy (LV).

There's very little documentation on this condition and even less on ways to treat LV. I've tried many treatments, including daily injections of low-molecular weight heparin (a blood thinner) and even a daily 6-week treatment using hyperbaric oxygen tank therapy to induce oxygen where it counts most.

Unfortunately, due to my underlining conditions, any treatment we've tried has had little to no effect.

Both of my legs have been wrapped with Coban 2 layer compression bandages, Biatain ibu wound dressings, and other dressing materials for almost 9 years straight.

I've unfortunately become somewhat of a professional wound care specialist and try to educate and help others whenever I can. I've been to many wound care clinics giving presentations to new ER nurses and long-term wound care clients looking to be more independent with their own care from home.

One day at a mall, I was standing in line to get a coffee when suddenly I felt a "pop" from my right leg. A few seconds later, my foot felt extremely warm. Looking down at my leg, I was shocked to see that my foot was now standing in a pool of blood. Stunned, confused and somewhat embarrassed, I started walking down the hall to try to reach an exit in order to hail a cab to go to the hospital.

I had no idea I was leaving a trail of blood as I walked, and a few pedestrians followed my every step. I eventually collapsed from the blood loss and woke up sitting on the floor with a kind man who had wrapped his shirt around my leg to prevent more blood loss.

This was probably one of the scariest moments in my life. I was surrounded by people who were helping me while I was sitting in a pool of blood and I didn't know a single person (still don't to this day). It amazes me when people say the world is a mean place, because I've found that there are kind individuals everywhere I look. It's all in the mentality on how you chose to live, which surrounds you with what you believe in.

To date, these conditions have changed my life drastically in ways most people can't fathom. We’ve also discovered after extensive tests that I was born with one kidney, my arterial system is extremely abnormal and I have an elongated bladder. Like most people suffering from these conditions, I am forced to take an assortment of medications to help with blood clots, inflammation and pain. I have to be very careful of the type of foods I eat to enhance my energy, healing and well-being. My life has become very specific to daily tasks and necessary precautions.

One day I hope to meet a specialist willing to take a little risk here and there. At this point, I'm open to any suggestions that could provide me with some form of possibility for a better life.

Nowadays my time is dedicated to helping others, gaining knowledge and connecting with like-minded individuals who are an inspiration to myself and all who know them.

Martin Lemieux is from Ontario, Canada. Martin dedicates his time to helping patients who cannot advocate for themselves. He is currently writing two books on health care, patient care and how to be your own healthcare ambassador. Martin can be reached on Twitter at @Martin_Lemieux.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.