On January 1, 2002, I woke up feeling like I had a weight on my foot and was dragging my leg. As the morning went on, my leg felt like it was double the size of my right, and I was in pain. My husband took me to the emergency room.
The doctor believed I had a deep vein thrombosis (DVT) and ordered a CT scan and an ultrasound. I was admitted and spent five days in hospital. I was put on warfarin for six months and had a break for three weeks whilst they did lots of tests. I was told I had protein C deficiency (which is genetic) and I will be on warfarin for life.
I developed additional DVTs in 2010, 2015 and 2016. Both of my sons were tested for protein C deficiency, and one of them had inherited it. I felt like such a terrible mother for passing this deficiency on to him.
In 2016 I saw my vascular consultant, who decided to perform an angiogram as I was in daily pain with swelling (despite wearing my compression stockings) and continued to get DVTs. I had an angiogram February 2017 and had developed another DVT.
In March 2017 I started to get the most horrendous pains in my stomach. I couldn’t eat without pain, and I became afraid to eat. Local doctors were baffled. I was referred to a specialist, and scans revealed I had celiac artery compression syndrome and May-Thurner syndrome.
In January 2018, while awaiting surgery, I had another DVT. I was admitted to hospital where I spent nine weeks. I had surgery and had stents placed. My symptoms didn’t relieve. Because I hadn’t been able to eat solids for so long, I was given essential nutrients and a feeding tube.
I needed further stenting, then I needed celiac plexus blocks. From March 2018 through March 2020, I had 19 procedures. Then COVID hit. I had the stents placed to relieve my May-Thurner symptoms in November 2022.
I suffer from anxiety and PTSD from being so close to death and all the procedures I’ve had so far. I wake up every day thinking could this be the day I wake up to another DVT. My journey is still ongoing. I undergo regular monitoring, I’m on medications for life, and I will need further intervention going forward.
Protein C Deficiency Resources
Psychological Impact of Blood Clots
May-Thurner Syndrome Resources