“Chronic Illness Gave Light to Truly Meeting My Potential with Livedoid Vasculopathy”
February 24, 2016
By Martin R. Lemieux
My story starts back when I was around 18 years old, almost 20 years ago.
Factor V Leiden – Blood Clotting Condition
At the age of 18, I had my first DVT, deep vein thrombosis (blood clot) in my lower left leg. Doctors, not thinking anything of it, thought it was due to a back sprain that forced me to lay down for a long period. But once I started getting a clot about once a year thereafter, they started investigating further. Around the age of 21 I was diagnosed with Factor V Leiden – a blood clotting disorder that makes a patient prone to clotting for the rest of their life. Normal treatments would include: Warfarin injections and Coumadin once daily afterwards.
Over the years, my arteries below my waist have become battered, bruised and swelled consistently thus creating more health problems. I have 5 confirmed clots over the years and a great deal more broken clot pieces swishing around. My arterials valves are damaged, causing other problems.
Chronic Non-Healing Ulcers
About 9 years ago, around 2006-2007 I was working one day and I had this reddish/black round spot overtop my outer ankle on my left leg. After a physical days’ work, I came home, took off my work boots and this spot ripped off with my sock causing a great deal of pain, along with bleeding. Panicking, I went straight to the hospital. Once they were done with some extensive tests, no one had answers. I was given outpatient care for wound care and went on for a while.
The wound itself became larger, more inflamed and caused a great deal of pain. I was seen by a dermatologist who at the time was out of options for me, so I was sent to a leading dermatologist in Canada, Dr. Sibald. He determined that these chronic wounds could be due to a condition called Vasculitis, while also improving on wound care methods to help with the inflammation, discomfort and of course the pain.
Both my legs have been wrapped with Coban2 – 2 Layer Compression Bandages, Biatin 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.
My legs have to be changed twice a week, fortunately I am able to do this directly from home. I’m required to visit a wound care clinic on a regular basis to document any progress made and to discuss options (if available), but for the most part, life goes on the same as always.
It doesn’t help either that I’m allergic to Silver, which is one of the leading natural properties worldwide for healing wounds and skin care.
Vasculitis > Livedoid Vasculopathy:
Any form of Vasculitis is rare, I was initially treated with Prednisone for almost two years with no effect. In the end, I didn’t want to be on Prednisone anymore because of the major side-effects and the fact that my wounds were not healing whatsoever. My specialists agreed, which brought up the question: if it’s not Vasculitis, is it possible that it’s, in fact, an even more rare condition? This is where the theory of Livedoid Vasculopathy was mentioned.
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 and even a 6-week treatment using Hyperbaric Oxygen Tank therapy 2-hours a day to induce oxygen where it counts most. Unfortunately due to my underlining conditions (i.e. Factor V & LV), any treatment we’ve tried has had little to no effect.
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 energy, healing and well being. My life has become very specific to daily tasks and necessary precautions.
But I remain extremely positive for my own well-being and for those around me. Especially, for my son who I love dearly. I continue to see specialists, try new treatments and continue to stomp the best of the best specialists available to me. It wasn’t until I found Mayo Clinic Connect that I truly suffered alone and now I look forward to new posts, replies and discussions surrounding the entire community. There’s nothing better for your own healing, by helping others do the same.
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 can provide me with some form of possibility for a better life.
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