My Deep Vein Thrombosis Scare

I wanted to write about an experience I had recently, which at the time was very frightening, and it made me think a lot about how delicate our health is when we have lupus. I had been noticing pain in my right leg for a couple of weeks. It seemed to be coming from behind my knee and to the inside of it.

The beginning of my DVT scare

At first, I didn't overthink it. It was more of an annoyance. I assumed it was probably muscular and nothing to worry about, although the situation became more urgent when I visited my mum, who lives an hour and a half away.

I was just going to bed when I noticed that my leg was starting to swell quite a bit. I knew from previous experience that this could potentially be a DVT (deep vein thrombosis).

I knew it could be severe, and I didn’t want to leave it until the morning, so I decided to take myself off to the hospital.

My trip to the hospital with lupus

Upon arrival, the triage nurse took me to an examination room to take my vitals and ask me many questions. When she tracked my heart rate, she nearly flew off her chair. It was at 160 beats per minute!

Interestingly I was sick a few weeks prior. Whenever I get a virus or suffer stress, it triggers off POTS (postural tachycardia syndrome), making my heart race very fast. However, one symptom of a DVT is tachycardia, so she fast-tracked me onto a ward where they could further observe me.

They hooked me up to all the monitors, and I just remember feeling so scared. I was worried about my 4-year-old daughter that if she woke up in the night, she would be asking where I was.

They performed numerous blood tests on me, but the D-dimer was important. This blood test can help detect the presence of a blood clot. D-dimer is a protein fragment that is made when a clot dissolves in the body.

I had to wait a few hours for the results, but finally, the doctor told me they suspected I had a DVT in my leg as all of my symptoms and test results pointed to it, especially as I’d had covid a few weeks prior. I had also experienced a clot in my leg in 2010.

They started treating me straight away with blood thinning injections, and I had to wait the weekend out until I could have an ultrasound on my leg to confirm the diagnosis.

Everyone, including myself, was convinced that I had a clot, and I was preparing myself for months ahead of blood thinning medications and canceled plans, so you can imagine my amazement when the sonographer performed the ultrasound and said there was NO clot! I asked him to check and double-check again, but he was certain.

I was sent to see another doctor at the hospital and to have some more tests before I was discharged.

Sorting through the confusion

Having lupus single-handedly raises our chances of a blood clot. This is due to the body producing too many antibodies in the blood. If you develop antiphospholipid antibodies, you will have a much higher risk of developing clots.

I asked the doctor why my D-dimer blood test was raised if I didn’t have a clot and he said simply having lupus can cause it to be elevated, and having covid can also cause it.

I am incredibly grateful that I didn’t have a DVT on this occasion. Still, I hope my experience will highlight concerns about developing blood clots for lupies and the importance of getting immediate medical attention if you have the slightest concerns about symptoms.