My Chronic Illnesses - Phase I

» Phase I - Timeline: Age 20-30
Phase II - Timeline: Age 31-Present
Phase III - Timeline: 33-Present


I've heard the same old story all of my life; "You're so unique!", "That's crazy", "I'm so sorry to hear that!", "How did that happen?", "There's something wrong here!". But there's definitely something that these people don't understand, that there's only one constant that holds true; I don't feel unique, crazy or sorry about any of it, nor do I feel there's anything wrong! These illnesses represent the cards I've been dealt, which represents the bottom line that defines who I am.

As I always say...

"I'm like a rabbit who's stuck in a turtle's shell!"

 So let's go back in time a little to get a feel for what's happened in my short life so far. We will need to start this journey at the age of 20. At the time, I was working for a landscaping company, just me and the owner. In the winter we would shovel snow around local businesses, since that's what landscapers did to keep a float during the off season. One day, I pulled my back clearing the side-walk around a large commercial building. At the time that it happened, it didn't dawn on me that it was a bad injury of sorts, just something that happens to hard working men and women. The back injury kept me in bed for the next few months due to excruciating pain in my lower back, which I didn't know at the time, was the catalyst that ultimately led to my first chronic illness...

The 1st Blood Clot:

At the age of 20, I had my first blood clot built up over time located in my lower left calf. For anyone who hasn't had a blood clot, imagine if you will, your leg swelling to the point of feeling like it's going to burst, coupled with the pain of 100 needles digging into your calf at all times. That gives you a small picture of what an average everyday blood clot feels like. Not to mention walking is also out of the question since your entire leg from the thigh down feels like a rubber band ready to snap back at any time due to the immense opposite tension. Bending at the knee is next to impossible, the swelling was so great that my leg looked like an over-inflated balloon ready to pop at any time. Oh yeah, let's not forget the ankles, which  could never fit into a pair of socks or any kind of loosely fitted running shoes.

You have no option but to put your leg up, take blood thinners (rat poison aka Coumadin), anti-inflammatory's (Naproxen) and painkillers (Oxycodone or better). The best thing to do is to try not to move too much and hope that you don't have to use the wash-room more than once or twice a day. It's best to stay at a family members place during the healing process since you don't have the ability to make yourself something to eat, or get a glass of water on your own.

The first blood clot was brushed aside from the team of specialists I was seeing at the time as a repercussion from being on the couch for a few months due to my lower back pain. Thank you Canada for your wonderful snow fall each year ;-)

The 2nd Blood Clot - Developed Out of Thin Air:

After completing the recommended four months needed for the blood thinners to take full effect, I figured my life could return to normal, but something was different. My left leg didn't perform like it used to and there remained a constant pain in my lower left calf which never seemed to go away.

The more I used my leg, the worse the pain and swelling seemed to get. Keeping positive, not thinking too much about it, I tried to live on and keep moving forward by doing the daily activities I was well accustomed to. One thing you should know about me is that I used to be extremely active; going for bike rides up and down the escarpment, visiting a climbing gym twice a week, playing tennis with friends, going for a swim from time to time, being a handyman around the house and so on. These regular activities slowly got harder and harder to do on a regular basis until one day, it all but stopped.

About a year after my accident shovelling snow and going through my first experience with blood clots, I developed a second blood clot right out of thin air! This time, there was no incident to give it purpose, nothing accelerating the the blood clot with purpose and giving the sugar ball time to form, and this one was now forming in my right leg. Once you've experience an initial blood clot, you can easily sense when another one is starting to grow within.

Angry and frustrated that this was happening again, my family and I quickly sought out advice from as many professionals who specialized in helping patients with DVT's (Deep vein thrombosis) as possible. What we didn't realize is that when I saw a specialist the first time the first time around, I was introduced to Dr. Douketis, one of the leading practitioners from St. Joe's who was world renown for his studies on blood deficiencies. His department, a team of practitioners and well educated nurses had a great deal of experience under their belt when it came to dealing with blood clots or DVT's as they call them.

As I always do with anything, I started grinding down into some heavy research online, reading anything that related to the effects of thrombosis, the aftermath and trying to find health cases featuring younger individuals who experienced multiple DVT's. To my surprise, I couldn't find a single known case that tested young individuals getting multiple DVT's within a year of each episode. Shocked and confused, I studies and researched harder and with purpose. It turns out, blood clots are quite common for individuals older than 55 and up. In time as we grow older, our veins and arteries become congested, bruised or damaged which prevents the flow of blood throughout our bodies. Our hearts have to work almost twice as hard, which would explain more known cases of stroke victims in their later years of life. This isn't true in younger individuals, especially not someone who is just 21 years young.

After many discussions with a couple of specialists from the thrombo unit at St. Joe's hospital in Hamilton, ON and some well placed arguments as well, we all agreed to start performing a multitude of tests.

"The 1st Ultrasound Revealed Something Strange!"

At first, specialists at St. Joe's in Hamilton desperately needed to see what was going on with my legs internally, so an extensive and thorough ultrasound was ordered. The results were less than spectacular, in fact a little alarming as the pictures showed up on the black & white screen. The ultrasound specialist was a bit confused and baffled from what she found! With years of experience as an ultrasound technician, she admitted to being intrigued as the the screen displayed some unusual pictures. After a couple of minutes of sliding the cold and wet nozzle up and down my side, she admitted in embarrassment that she couldn't find my right kidney!?! Confused myself, I asked if she could find my left kidney and presto there it was, but not what you would expect. My left kidney was double the size of what a normal healthy kidney should be. It measured about 13-14 centimetres in width. A normal kidney should measure around 6-7 centimetres total. It was later concluded that I was actually only born with one kidney. All this time, me and my family had absolutely no idea of the birth defect. That does explain why I used to have pain from sleeping on one side, tossing and turning all the time and it now explains the discomfort I still get from time to time just from sitting in one place upright for too long.


As if finding out that I was born with one kidney was bad enough, the strange ultrasound results didn't stop there. When the ultrasound specialist made her way down my legs, she lost my arteries all together and even worse, she couldn't find or measure a good blood flowing pulse to follow downward. See most ultrasounds revolving around blood conditions rely on blood flow up and down to go by in order to determine a cause or find a blockage of some kind. Don't quote me on this, but when you look at the ultrasound screen, they assign a "blue colour" to show blood flowing down and "red" to signify blood flowing upward. Both of these colours seems to all but disappear while moving up and down my thigh. 

What we found actually astonished the ultrasound specialist even more.Where a humans veins & arteries should be normally found internally, I had empty space!!! Most of my vein & artery systems seemed to be branched into different sections of my leg, some almost non-existent. We documented that my "back up system", a large labyrinthine of smaller, less utilized blood vessels which act as a back-up system - was in full working order. All of us have this "back-up system" which remains mostly dormant in case our primary system fails, but my back-up blood system was working at full capacity. I had veins in places that shouldn't be there. Yet another birth defect. The ultrasound specialist was amazed at the still photos taken and admitted that she very much enjoyed performing the ultrasound on me. Glad to be of service, come back any time!!!

Can I finally get an Answer Please!?!

The ultrasound was inconclusive in the sense that the results couldn't tell any of us the reason behind my multiple blood clot encounters. The doctor did however tell me that there was evidence of blockage (blood clot forming) in multiple areas of both my legs, the left leg supporting the worse of the two. This was a growing concern since blood thinners normally help to thin the blood just enough so that you develop better flow all around, and thinners also help break up any miscellaneous clotting that may be forming by flowing through the already clotted areas easily. Due to the non-conclusive tests already performed, an extensive array of blood tests had been ordered by my team of specialists, which would be used to start ruling out other possibilities.

"So far every specialist I spoke to had no idea what was going on and many of them had never seen a case such as mine. "

Being classified as a "rare case", my defects did have a positive outcome, that lead to being asked to take part of a high end study which I gladly participated in. If you get a chance to take part in a specialized study, do it!!! Health studies usually equal to getting the royal treatment from the hospital and all that is has to offer. No more line ups waiting countless hours for blood clinics. No more waiting to see your specialist. You'll leave many people wondering why you where called in before others who are also waiting patiently, listening intensively for their name to be announced.

Health studies can also give you access to free medication and medical supplies. Back then, when I experienced my first and second blood clot, I needed one shot of Heparin a day, which would of  cost me over $900/mth for supplies.I didn't have that kind of money to put into my recovery. Luckily, everything was covered by the hospital due to the studies I participated in.

What studies did I do? I was directly involved in making "Warfarin" aka "Coumadin" generic for the public to afford. Prior to the studies, a monthly supply of Coumadin would cost you around $80-$100 dollars a month. Now you can get a monthly supply for around $30 bucks for the generic version. Definitely a worthwhile study to be a part of. I believe online 1000 people worldwide participated in making this needed drug generic and affordable.

Factor V Leiden Thrombophilia - Finally a Verdict!

Forget the fact that I hurt my back a few years before getting blood clots. Forget the fact that I found out that I was born with one kidney. And let's also forget the fact that my vein & artery systems aren't up to par. I finally got an answer from one of the blood tests ordered by my doctor. By the time I got the news, I was about 23 by then. Years had passed since my first clotting adventure. So this is it, I'm told I have a genetic deficiency called, "Factor V Leiden" Thrombophilia, a genetic deficiency.


This type of deficiency is actually really rare, it is attracted by both; mother and father who are carriers only. It turns out that many people around the globe are carriers of this deficiency, but very few manifest it within their children. Lucky me!!! For those of you who are wondering, in laymen's terms, Factor V Leiden deficiency is the natural forming of "sugar balls" or blood clots in the veins. We all carry special enzymes that break down the sugar in our blood naturally which prevents any blood clots from forming. With me having this deficiency, those enzymes don't function properly and don't help to break down the sugar (clots) forming on a regular basis. Hence why I am prone to the multiple blood clots I keep getting from time to time.


To this date, I've had 4 documented newly formed blood clots. Two in my lower left leg, one in my right calf and a fourth in my pelvic area. I don't wish on anyone to get a blood clot in the pelvic area. The pain is almost unbearable and not to mention, when the blood clot dislodges from the pelvic section, it travels down to the calf giving you a double dose of pain. Yes, you can say "Ouch!".

The Healing Process, What does the Future Hold?

Over the years, I've had to change my lifestyle drastically to accommodate for legs that do not work as well as they should. Not only for the better part of the day, are both my legs stiff, but they swell up like a balloon preventing regular movement and natural circulation throughout my body. Try walking (not running oh no), up a steep hill with swollen balloons for ankles and cantaloupes for calf's! It's not easy and not without massive discomfort and pain.

Due to my ongoing condition, I'm now forced to take blood thinners for the rest of my life, while also enduring the possibility of wearing pressure fitted stockings. Being on blood thinners (Warfarin a.k.a Coumadin), my blood "INR" needs to be checked every two weeks to ensure the pills I'm taking don't thin out my blood too much or too little (preventing good blood flow), and also to prevent seepage bleeding internally into my lungs. Many small factors can prove to be fatale while remaining on Coumadin.

For those of you who know me, know that these events in my life have never bothered me one bit. I've never really said "poor me!", or "I can't do it because...", or anything down those lines. This is the body I was given, so this is what I will work with. Keeping positive and moving forward, never dwelling on what I don't have and always concentrating on what I do have, which is the love that is around me.

But it didn't stop there...
Click here to read "My Chronic Illnesses - Phase II" >>


Thank you for taking the time to read about my life,
I hope to help yours as well!

Sincerely,
Martin Robillard Lemieux
Editor & Author