Lupus and DVT (Deep Vein Thrombosis)

I had pretty serious health scare last week.

Went to Doc for nagging pain in left calf – got to the point where ibuprofen wasn’t taking the edge off anymore so after a week of suffering silently I buckled and made a Dr. appt.   Saw Dr. Guler at UW Medicine in Covington. Fantastic patient experience, great clinic.   All initial signs and examination eliminated likelihood of DVT or Deep Vein Thrombosis (Blood Clot) but just to be sure Dr Guler asked me to go to a vascular clinic for an ultrasound.  I went directly from clinic to Pacific Vascular in Auburn which is located in the same building as Auburn General Hospital.  Long story short – they found a major blot clot in a vein in my left calf and escorted me immediately to ER to be admitted.  A couple hours later I was sent on my way with blood thinner prescription and instructions to contact a Coumadin / Warfarin clinic to manage the blood thinning process. Was also prescribed Lovenox which is a fast acting injectable blood thinner and instructed on giving myself injections in the stomach twice a day for five days until the Coumadin takes effect. .

The danger of DVT or blood clot in the leg is if the blood clot breaks loose it can cause PE or Pulmonary Embolism where the blood clot lodges in the arteries in the lungs and  can cause sudden death.

After much research I have discovered that between 10 – 30% of DVT patients die from PE within 30 days of DVT diagnosis and is estimated that between 100,000 and 300,000 people die in the US every year from PE making it potentially the 3rd leading cause of death behind heart disease and cancer. Statistics are somewhat vague as many DVT/PE deaths happen after surgeries or in cancer patients so cause of death is sometimes attributed to other causes although DVT / PE may have been the final blow.

Crazy huh?  I feel very fortunate that  I swallowed my pride and overcame my stubborn resistance to go to the Doctor (with prodding from my girlfriend and father!)

Why am I writing this?   Two reasons.  With the reality of facing possible death from PE  I woke up today and asked myself 2 questions. 1. What is great about this? (Thanks Tony Robbins)  and Who can I help with the information and experience I have gained?

I think the second question answers the first and impetus for this blog post.

I am looking for 3 things from this post:

  1. If you or someone you know is experiencing an achy pain, swelling in calf or leg get to the doctor ASAP. Does not feel like a pulled muscle or sharp pain, feels like your muscle is so inflamed that it is going to explode. The pain worsened and I was taking ibuprofen to take the edge off, on a scale of 1 -10   I would say the pain was a 7 but with ibuprofen went down to a manageable 3 or 4. I had never heard of DVT or PE before yesterday. Unfortunately many DVT patients experience PE a result of DVT before consulting a doctor because they think they pulled a muscle. Again, up to a possible 30% of DVT / PE patients die. Some die without ever going to a doctor.
  2.  Awareness. If you are aware of DVT / PE, the symptoms and what to do if you experience DVT or PE your chance of survival increases. That is the main reason I am sharing my experience today to spread awareness. I am by no means out of the woods, my treatment is just beginning and the blood thinning process and hopeful subsequent dissipation of the clot can take months and I am at high risk of PE.
  3. If  anyone that reads this has experienced DVT or PE I would love to hear about your experience.

After meeting with my Doctor the following day, he had ordered a bunch of blood tests and the results were back.  The inflammation in my body is really high. All the Mixed Connective Tissue and Lupus marker tests came back really high.

My Doctor is certain that the DVT (blood clot) was a result of Lupus and the systemic inflammation throughout my body.

Makes sense – my red blood cells are inflamed. Blood tests prove that. My blood clots quicker and runs thicker because it is inflamed.  My Doctor told me that Lupus and all auto-immune disease patients with systemic inflammation are at higher risk of a DVT and PE.  I had no idea.

I have been dealing with Lupus / Mixed Connective Tissue Disease and RA for 16 years!   I manage my disease through nutrition.  My nutrition ROCKS! I’ve been doing Nutritional Organic Green smoothies for almost 15 years! I juice. I eat mostly vegetarian, organic, gluten free, dairy free and sugar free. I don’t eat processed foods very often.  I do Juice cleanses twice a year.

The doctor said whatever your doing, keep doing it because most people with your level of inflammation in their body are in a lot of pain and require Enbrel or Humira, Plaquenil, Methotrexate, Prednisone etc…  Just to get by.

I get it. I live with fatigue and chronic pain every day – for 16 years. But I have minimized the pain through nutrition.  I have accomplished some amazing physical feats (triathlons and bike rides) for someone with Lupus and MCTD like me.

Last week I was a Dead Man Walking – at high percentage risk of having a Pulmonary Embolism from a DVT / Deep Vein Thrombosis – blood clot in my leg.   I’m lucky I’m alive.  I’ve read the stories of those who didn’t make it.   I am blessed and I am going to take my nutrition to an even greater level than ever because I am determined to beat this Auto-Immune stuff.

I am recommitting myself to this blog and the information I’ve learned so check back for updated info. I will be posting at least weekly and adding more great healthy anti – inflammatory recipes!

Even going to create some recipe videos.  This could be fun!

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