Staying Positive Despite Numerous Blood Clots: Martin Lemieux’s Blood Clot Story

Categories: Patient Stories

The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.


Martin_LMy name is Martin R. Lemieux, and for over 20 years now I’ve survived five DVTs – blood clots in my left leg, one clot in my right leg, and another clot in my left pelvic area. As if that wasn’t enough, I’ve also had to manage three massive chronic wounds that will not heal.

My chronic wounds, measuring between the size of a baseball to the size of a football have been open for nine years straight, from a condition called Livedoid Vasculopathy or LV, which is very rare form of Vasculitis that is in constant battle with a blood disorder I was diagnosed with – Factor V Leiden or FVL. FVL is an unfortunate hereditary condition that affects about one out of 300,000 people.

At the age of 18, I experienced my first blood clot and then another clot at 20 and 21 years old. Most people are usually lucky to survive one clotting incident. Having Factor V Leiden, leaves me prone to clotting for the rest of my life.

I’ve been very fortunate so far to have survived all of the blood clots in my life. The key to my success is knowing the signs before it’s too late. Knowing the signs is the key to survival, since you can react quickly and go to the ER immediately before it’s too late. In my case, visits to the ER are very frequent, since my arteries are damaged, bruised, and weakened from years of dealing with clotted veins.

I have no option but to take blood thinners for the rest of my life. If you’re ever told that you have to take blood thinners, don’t take that advice lightly. Refusing to do so, might cause a dangerous blood clot such as a DVT in your leg, a PE in your lung, or a clot that might lead to a heart attack or a debilitating, clot-provoked stroke. Any of these scenarios could be life threatening or, at the very least, take away some of life’s daily pleasures, like being able to walk.

Blood clots are a leading global killer and they are not 100 down the list. They are typically ranked as the second or third cause of death in the world.

To protect yourself, you can read up on signs and symptoms and take them very seriously. Make sure to stretch your legs all the time! Work with your doctor to determine the best way for you to eat healthy, stay away from high cholesterol diets, drink lots of water, and take your vitamins. Also, stay active and live a healthy life. Go for walks and stop smoking. You don’t want to end up like me, wishing you could go to the beach, or wanting nothing more than to be able to ride a bike again or just go for a run. Today, it is important for me to advocate for blood clot awareness, rare diseases, and overall health, as well as to help other people cope with their illnesses and share experiences like these on a daily basis.

You can connect with Martin on Twitter: @Martin_Lemieux


To join our online discussion community and connect with other people who have experienced a blood clot, please click here.

To learn more about Factor V Leiden, please click here.
Author: SW

6 Responses to "Staying Positive Despite Numerous Blood Clots: Martin Lemieux’s Blood Clot Story"

  1. RoseleaSmith
    RoseleaSmith Posted on March 29, 2016 at 12:34 pm

    I to have survived many clots. I feel for you. I am fvl and antithrombin III. Miscarried and one stillborn baby, life flighted for a bleeding episode.
    My legs are painful everyday, there’s no way around it. I would walk a lot with my dog, but, achilles tendonitis has dampened my time walking. The pain.
    I am lucky not to have the sores you spoke, I’m sorry you have those sounds awful…it is very hard to stay positive.

    • Martin Lemieux
      Martin Lemieux Posted on March 29, 2016 at 5:40 pm

      Thanks Roselea for those kind words and for sharing your experience. Yes, my wounds are painful, but pain is pain. I don’t see my pain no worse than yours. I know what you’re going though! I hope you get many days walking with the dogs and enjoying what life has to offer 🙂 Have a wonderful day.

  2. Brittney
    Brittney Posted on March 29, 2016 at 7:55 pm

    If you don’t mind me asking, where are your chronic wounds ? I have permanent lung damage to my right lung, at this time I feel like the pain and being out of breath all the time will never go away. I’m 23 my story is a few stories down. I’m happy you survived and kept a positive attitude dealing with all these clots. I too have factor V Leiden as well as MTHFR and will need to be on blood thinners for the rest of my life. When you first got your blood clots, did the others happen while you were on a blood thinner ?

    • Martin Lemieux
      Martin Lemieux Posted on March 31, 2016 at 5:37 am

      Hi Brittney,

      My wounds are all below my knees. Two of them on my left leg on both exterior sides, and the other on my inner right ankle. They are the result of two vascular conditions fighting each other. Livedoid Vasculopathy is an extremely rare disease that some specialists believe I may have contracted due to all the DVT’s i’ve had throughout my life. As for my earlier clots, in the beginning I wasn’t diagnosed with FactorV until my 3rd clot, which staying on blood thinners didn’t seem necessary. Also, for some reason, while I was on Coumadin my body wasn’t producing INR levels at a good sustainable rate. I was constantly increasing/decreasing my dose, sometimes weekly just to stay ahead. After some dietary changes, and lifestyle changes, we started to manage my INR better. During that time, yes I did get other clots. These days it’s extremely hard to determine if I have new clots, or just old ones since my legs are riddled with clot formations from previous episodes.

      I’m sorry to hear about your lung damage and breathing problems. Do you use a CPAP machine to help deliver oxygen while sleeping? I understand how you feel at 23, I was scared to death, had no one to turn to and didn’t know if I would live long enough to see my 30’s. I’m so sorry to hear about your grand-father. My FactorV mutations comes from my grandmother’s family on my mother’s side. We found a website (just recently) warning our family members about our history and FactorV. I wish we would have found that website years ago, it may have helped me to better understand what’s important to keep my health in check and to not feel so alone battling these conditions.

      Please feel free to connect with me anytime, even just to vent, PM me on my twitter account @Martin_Lemieux

      Thank you for reaching out and thanks for having the courage to tell your story. You’re an inspiration to myself and so many others like us.

      Regards,
      Martin

  3. Shalon Ornelas
    Shalon Ornelas Posted on April 14, 2016 at 2:43 pm

    Hi
    I have had blood clots in both my lungs souly loaded ……. they don’t come from my legs and I have been to 2 specialist and they just don’t know where they come from . I am on war fin for the rest of my life. and get checked every two to 4 weeks. In the beginning when I found out I could not sleep for months for fear of never waking up . Now I am ok with it . Diet , and exercise and the right amount of medication keeps me safe. Altho I still worry. Like falling and cutting myself. I am 66 years old and have had this for 9 years, Have not been able to see my daughter son in law and grandchildren who live in Scotland . 2 come to me now once a year. But there has been two that I have not seen for 8 years . Thank God for Skype….. but the hugs and human touch is gone. this is a sad part of my life …but realize their are worse then me …..
    Thanks so much for listening.
    Shalon

    • Martin Lemieux
      Martin Lemieux Posted on July 7, 2016 at 2:36 pm

      Hi Shalon,

      Thank you for sharing your story. I’m sure it’s not easy talking about it sometimes due to the loss and pain you feel. I understand what you’re going through, I too have problems travelling and have to find ways to cope with the small details in life that just aren’t an option anymore. I hope this message finds you well and that you have an opportunity to connect with people.

      Please stay safe.

      Warm Regards,
      Martin