Protein C Deficiency

bloodWe all have to have a “pet disease,” I suppose, and mine is Protein C Deficiency. PCD is an entirely genetic roll-of-the-die-type of disease which basically means my body produces little to no Protein C, which is found in the bloodstream and controls blood clotting, keeping it within reasonable levels. Without it, a person such of myself is at a very high risk of developing a deep vein thrombosis (blood clot) which can result in heart failure or a stroke.

Protein C Deficiency is not the result of lifestyle choices. It is not a disease that cares who you are or what you have done to your body. I am a pretty healthy individual with no bad habits and I still suffer from it. For complete information on Protein C Deficiency, visit this page.

I have been hospitalized once for a blood clot, which was discovered just in the nick of time and dissolved. After my diagnosis, I was put on what will be a lifetime regiment of Warfarin, a popular blood thinner. I have to take a dose of Warfarin every single day for the rest of my life, but, because of the nature of the disease and the drug, my dosage can change month to month, or even week to week. I have a monthly blood test called a PT Test to determine my Warfarin level so it can be adjusted accordingly by my doctor. But since Warfarin, in turn, is impacted by diet, my regiment has been altered many times so far. Warfarin is affected by Vitamin K, which is found in most leafy green vegetables, so it can make my level bounce around a lot, depending on how much I’m eating of it.

Warfarin, like many other drugs, has its dark side. I’m inclined to bleed a lot from virtually anywhere I nick skin or there is the slightest pressure on a vein or artery. Things I need to be careful to do are flossing my teeth, shaving, using sharp tools or instruments, or even just scratching my skin. In the winter I can have nose bleeds that last for a day or more. I bruise at the slightest touch. I cannot have surgery of any kind, even dental, without weeks of preparation. I experience extreme and sometimes almost debilitating fatigue, and I live borderline anemic. I’m very pale and often look like I haven’t slept. I cannot take any form of birth control, and pregnancy is much too high a risk for me. So even though the drug keeps me alive, there are some things I have to trade off on it. Overall, I feel pretty well and I’m still doing what I love to do–write books and create kickass book covers for both myself and my client base.

I hope you will educate yourself a little on Protein C and its sister, Protein K, Deficiency. They are very overlooked diseases, but recognizing the symptoms can save you or a loved one. If you or someone you know experiences a sudden blood clot in their arm or leg, you must take yourself or that person posthaste to the emergency room. If someone in your family died very young of an unexplained heart attack or stroke where they had no obvious risk factors, you may want to be tested for PCD–and yes, there is a simple, painless blood test for it. I urge young women to seriously consider having the test done before they decide on a hormone-based birth control method, as you can have it and show no symptoms for many years, as I did. Untreated, the disease can progress rapidly and end in disaster for you.

Like many diseases, living in the shadow of PCD is not the end of the world. It’s just a lifestyle adjustment. Educate yourself and stay safe and alive! If you have the condition yourself, or know someone who does, feel free to share your story in the comments below!

6 thoughts on “Protein C Deficiency

  1. Hi! I found this post so interesting. My dad had a very bad clot in his lung back in 2012 and we didn’t know why. I went to the doctor and found out that I have PCD. I’m almost turning 19 and because I haven’t had a clot myself yet, the doctor doesn’t want to give me any medication. Although I understand, I do sometimes feel like they are just waiting for something to go wrong!

    • Hi Kate,

      I am so glad to hear you discovered your condition early on. It will help you and your doctor monitor your health throughout your whole life. I hope you never have to experience a clot, but there are wonderful medications and the condition is easy to control these days, so you’re in good hands! Stay healthy. 🙂

  2. Hi! I know exactly how this goes as i too have protein c deficiency – but don’t give up any dreams of having children, i went on to have 3 healthy boys after a diagnosis was made following a pulmonary embolism in 1999. Xx

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