In addition to inheriting migraines and hormone disorders from my mother’s side of the family, I’ve also inherited a strange but common gene mutation called Factor V Leiden. It’s a term that is common in the UK, where my mum is from, but not so much in Canada. The gene mutation itself originates from somewhere in Europe – at least that’s what I have found in my research over the years. According to Canadian research, Factor V is “rare.”
In order to tell you what Factor V is, let’s first go into what it means to have a blood clotting disorder which can at times, be a life threatening thing.
What is a blood clot or deep vein thrombosis?
A blood clot is when a clump of blood has changed from a liquid that runs freely through your veins to a thicker almost gel-like substance. In some cases, the blood can turn into little round balls also known as clots. Clots are most commonly found in the shins or legs but can move up in your body and can be present in your heart and lungs. Rarely, clots can travel to your brain and cause an aneurysm. This is also known as a stroke.
The dangers of blood clots is that they do not clear up on their own. Without immediate medical treatment, the clots can travel and cause serious damage. In some cases, the clots can even cause death. This is a medical emergency and one that would require a trip to the ER. And let me tell you – those are not fun. I’ve been to the ER a few times for what my doctor suspected was a clot but it turned out to be edema in the legs.
To make matters even more confusing, there are different classifications of blood clots that have different names. Not all clots are alike. Some build up slowly over time while others can appear suddenly without warning.
Detecting a blood clot
This is a term I became familiar with over the years. If your doctor suspects you have a clot, he/she will order a D-dimer test. This is a simple blood test that can be done in any lab. If the D-dimer test comes back positive, it’s possible that you may have a blood clot. But not always. In my case, even though I had symptoms of a blood clot (swollen feet and ankles, red skin, hot to touch), and the tests came back positive – it turns out that the blood tests were a false positive. Sounds stressful right? It definitely was.
Treating a blood clot
Three times I had to go into the ER to have an ultrasound to search for a blood clot in my legs. Each time the tests came back negative. There was one time that I was admitted to the Royal Alex hospital as an out-patient. Given my family history, the doctor was concerned I could develop a clot. They administered me shots of heparin (a blood thinning agent) every twelve hours for two weeks. It was one of the most trying times in my life.
On the last day of my injections, something happened with the shot which was administered to my stomach. I woke up the next morning to find my entire stomach had turned black. Yes, black. It hurt to move. My friends drove me back to the ER which I was admitted immediately.
It turns out that my blood was too think and I was bleeding internally. It was what was known as a hematoma. The bruises took several months to heal. I wish I had taken pictures of it but this was before smart phones. I can tell you that my entire waist and stomach area was black. I still have a small section in my tummy where you can feel a tiny little bulge from it.
A hematoma is a collection of blood that gives the skin a sponge like lumpy feel. It looks like a bruise on the outside of your skin but on the inside is a much scarier picture. I can only imagine what my stomach must have looked like. I can tell you that I’ve had some nasty bruises over the years – but nothing compared to this.
I remember the look on my dad’s face. He doesn’t do well with bruises or blood in general. He nearly passed out. Even the doctors really couldn’t figure out what was going on. They gave me some pain killers and sent me home.
We know now that just because my legs are swollen, it doesn’t necessarily mean that it’s a blood clot. A lot of things can cause swollen feet and legs. After a few years, we realized that the culprit was likely hormones or water retention. A diet high in sodium can also cause water retention.
Factor V Leiden
Factor V is one of the most common blood clotting disorders though it’s not very well known in North America. It is a gene mutation that can increase your chances of developing a blood clot. But you can also live a perfectly normal life without ever having a blood clot.
Both men and women can have Factor V. There is an increased risk of women who are pregnant to have a blood clot during pregnancy. And unfortunately, it is very dangerous for women with Factor V to take any birth control in pill form. This is just one of a few ways this disorder affects my life.
In more serious cases, treatment may include regular blood thinning agents such as Warfarin. But again, there are dangers associated with taking this drug as we learned with my mum. Some people are fine with just taking aspirin daily. But please, do not do this without consulting with your medical team.
Factor V around the globe
As with many blood disorders, Factor V is an inherited gene mutation that is typically passed on from one parent . It is one of the most common types of blood disorders affecting somewhere between 3 and 8 percent of people that have a European ancestry. While the mutation is common in the UK and Europe in general, countries like Ireland, it is not very well-known in North America.
This is why it is so important to know as much as possible about your family medical history as possible. If it weren’t for my mum who stepped in when I was in the hospital for gall bladder surgery, I may have died on the operating table. As it was, surgery was very complicated and the surgical team had an issue with bleeding. Luckily, I came out okay with only two extra scars to show for it.
It wasn’t until about ten years ago, that my mum suddenly recalled a blood test I had as an infant. It revealed that there was an unknown gene mutation. This would go undiagnosed until I turned 20.
Living with Factor V
For most people, they can live a very healthy life with Factor V. For others, they may be prone to more blood clotting incidents or may experience miscarriages. It can be dangerous to take oral contraceptives which means relying on using other forms of birth control. Serious injuries could cause a blood clot. People with rare blood types may experience more blood clots than others.
The most important thing I can recommend as a lay-person is to have a good medical team who can find the right treatments for you. A hematologist is a must have – my beloved hematologist saved my life when it came to requiring iron infusions. He was also helpful in determining what kind of vitamin supplements I needed from being low on iron.
Weight management is also key to maintaining a healthy lifestyle. Regular exercise will help to control the swelling of your legs and can aid in circulatory issues. Riding a bike, using a mini-cycle, treadmill or going for a walk are all forms of exercises that can help. Adopting a low sodium diet while drinking plenty of water can reduce the risk of clotting.
If you’re like me with thin veins, this can make lab-work more difficult. Nurses often have to use my hand or wrist veins with a butterfly needle. They always try the arms first which results in the veins blowing out almost immediately. This always, results in a nasty bruise. It’s also one of a few reasons I don’t donate blood. Bruising may also happen easily if you even just bump yourself lightly. Sometimes bruises appear for no rhyme or reason. It is what it is. You do get used to it even if it makes your romantic partners squeamish. If this happens to you, I recommend drinking plenty of water before going to your lab appointment. Keep your arms warm and ask for a hot compress to bring out your veins.
If you’ve been recently diagnosed with Factor V, please let me know in the comments where you are in the world and which side of the family you inherited it from. I love learning about genealogy and how it plays a role in our health!
- American College of Physicians
- CDC – Blood Clots
- Stop the Clot
- Genetics KO
- NCBI Stats – Factor V
- Medicine Plus Gov
- Hemophilia Foundation – Factor V
- Alberta Health – Factor V Care
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