WebMD BlogsDeep Vein Thrombosis

What I've Learned on My Treatment Journey

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Patrice Jones - Blogs
By Patrice JonesJune 04, 2021

When doctors first explained my DVT diagnosis to me, I thought surely I’d feel better in a few days and get right back to work All would be well -- all I had to do was go home, elevate my legs, and get some rest.

I’d soon learn, however, that this would be a condition I’d have to live with -- and treat -- the rest of my life. 

And for me, treatment wasn’t easy to get used to. 

At the time of my initial diagnosis, I was 5 months pregnant. The doctor prescribed an injectable blood thinning medication. When the nurse came into my room to administer the shot, I thought SURELY she had the wrong hospital room. The worst part was, she administered the shot in my belly fat. It hurt and burned like hell! I remember gripping onto the bed sheets and grinding my teeth. I was in pain, pregnant, and terrified. 

But wait, it actually gets worse. I was sent home with a box of these injectable medications that I’d need to administer myself. At that point, I think I felt more uneasy about the fact that I had to inject myself with a syringe than I did about actually having a blood clot. I had to stick myself wherever I found body fat but never directly in the front of my pregnant belly.

For once in my life I was actually ecstatic about having excessive body fat. I injected the syringe in the sides of my belly fat, my leg fat, and sometimes my butt fat. I don’t know which was worse; the pain and burning sensation of the shots twice a day or the dark bruising and painful knots they caused on my skin. At some point, I ran out of body fat that wasn’t bruised or filled with painful lumps. I began to have to stick myself in old injection sites -- it was horrible. I never want to relive those moments. Actually, right now, as I am writing this, I am emotional and realizing how traumatic it all was. 

I went into research mode. What are blood thinners? What is an anticoagulant medication? What’s the difference between each of the medication and their effects on the blood? As I began to dig deep into the history of blood thinners, I couldn’t wait to get taken off of my meds. That actually became my goal. I was a new mom. I didn’t want anything synthetic in my body. I wanted to deliver a healthy baby and get off blood thinners. I just wanted to get back to a normal life and be healthy again.

But for me, DVT would end up being a recurring event -- and blood thinners have continued to be a life-saving necessity. Honestly, treatment has been a rollercoaster for me over these past 16 years -- too many ups and downs to list here -- but it’s taught me some things:

Anticoagulant clinics are not a replacement for seeing a hematologist. In most anticoagulant clinics, you’re sent to get your labs done, then you meet with either a nurse or nurse practitioner to discuss and regulate your medication dosage. But this is not meant to replace your visit with your hematologist! (It wasn’t until years into treatment that I realized this.) It is very important to select a hematologist and visit regularly as you journey through DVT.

The cause of your DVT can affect the treatment plan. A few years after my first DVT, my hematologist called me excitedly to tell me he’d finally found the cause of my blood clot. It wasn’t just a random occurrence. I have a genetic mutation that causes my blood to clot abnormally. The genetic disorder is called the prothrombin gene mutation. It leads to an increase in the level of a certain protein in the blood that causes clotting. It’s a great idea to discuss the effects of specific anticoagulants on proteins with your doctor. 

Doctors make mistakes, too. A few years ago, a gynecologist prescribed birth control pills to help control my menstrual cycle, though he knew I was taking an anticoagulant. About a week later, my 2-year-old son woke me up at 2 a.m. and said “Mommy, go to doctor.” When I tried to stand to put him back in his bed, my legs gave out. I was rushed to the hospital where I was diagnosed with multiple blood clots in my legs and on my lung. Doctors say if my son hadn’t awakened me, I would have died in my sleep. 

But the biggest lessons I’ve learned are actually the simplest to follow: Do your research, ask lots of questions, and be sure to keep your doctor appointments.

 

Photo Credit: Inti St Clair via Getty Images

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About the Author
Patrice Jones

Patrice Jones lives with the prothrombin gene and is a multiple DVT and pulmonary embolism survivor. A health and fitness professional since 2009, she enjoys reading, nature, weightlifting, cooking, and spending time with her 15-year-old son. Jones participates with organizations like the National Blood Clot Alliance to raise awareness of DVT. Follow her story on Instagram.

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