My Short Blood Clot Journey - Louise McCool

January 1^st 2002 I woke up and felt like my left leg was very tight, felt 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, I was now in lots of pain. My husband took me to A&E, where we had to sit and wait in a very busy A&E for 6 hours before seeing a doctor, after looking at my leg, she just said ‘how bizarre’ and made a call. Eventually, a consultant came, took one look at my leg, stuck his finger in my groin and asked if it hurt, yes it did. He rushed to the phone. He came back and explained he believes I have a DVT and was organising CT and ultrasound scans. I was admitted and spent 5 days in hospital. I was put on warfarin for 6 months, I had a break for 3 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.  

In 2010 I got the same heavy feeling, scans showed another DVT.

In 2015 I got the feeling again, scans showed another DVT.

In 2016 scans showed another DVT. Both my sons were tested for the Gene, 1 of my sons had inherited the gene, I felt like such a terrible mother, that I’d passed this deficiency onto 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 why I was getting frequent DVT’s.

I had an angiogram Feb 2017. I was mis dosed post op bridging plan and developed a DVT.

In March 2017 I started to get the most horrendous pains in my stomach, I couldn’t eat without pain, it got to the stage where I was too scared to eat, local doctors were baffled.  I was referred to a specialist his Scans revealed I had Celiac Artery Compression Syndrome and may-thurner syndrome. Whilst awaiting surgery, in Jan 2018 I had another DVT. I was admitted to hospital where I spent 9 weeks, I had major surgery followed by balloon and stenting. My symptoms didn’t relieve, as I hadn’t been able to eat solids for so long, I was given essential nutrients and feeding tube. I needed further stenting, then I needed celiac plexus blocks. From March 2018 – March 2020 I’d had 19 procedures. Then covid hit, I had the stents to relieve my may-thurner November 2022.

I suffer from anxiety and PTSD from being and feeling 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 or mesenteric ischemia. My journey is still on going, I have regular monitoring, medications for life and I will need further intervention.

By Louise McCool, 47 United Kingdom