My name is Graeme, and I am 33 years old. I would like to share my personal experience of blood clots as I hope this information will give you a better idea of what the symptoms to are, of this potentially life threatening condition. In July 2024 I went to bed as I had lower back pain which wasn’t unusual as I suffer from sciatica, but I woke up three hours later in agony. My leg had swollen and was now three times the size of my other leg and very discoloured, I woke my partner and asked her to take me to hospital.
After arriving at hospital, they carried out a couple of routine checks including monitoring my heart rate and blood pressure. Then suddenly they moved me to resus as my heart rate had soared to 169bpm and I had a still unknown issue with my leg. They were concerned it could be ‘compartment syndrome’ as it looked like I could have a severe clot.
After various tests such as CT/MRI scans, blood tests and doppler scans they confirmed it was ‘phlegmasia cerulea dolens’ – an uncommon and severe form of lower extremity deep venous thrombosis (DVT) that obstructs blood outflow in multiple veins.
The overall size of the clot went from my foot to my groin in my right leg with no breaks. I was told this was the largest known in the UK!
They also did several scans of my chest to check for further clots and found I also had a ‘pulmonary embolism’ (PE) – a clot on my lung.
I spent eight days in hospital having various treatments, taking IV Heparin and enoxaparin injections and being on a SCD Machine (Sequential Compression Device) To help with blood flow.
During my stay in hospital, I was asked if they could take photos and use the details of treatments and how it was diagnosed to use it in The NHS Training programs!
I was also told that if I had just gone back to sleep instead of going to A&E and getting treatment, I wouldn’t be here to tell the story.
Three months on, they are still unsure of the cause of the clot and referred me to Guys & St Thomas hospital for follow up appointments to monitor progress and see if any intervention is required.
November 2024
I am still taking I 5mg of Apixaban twice a day to reduce the risk of further clots.
The swelling had gone down, and I could walk again without any discomfort, but then I started having issues with my leg as it became itchy, and at times would swell, colour changes and be painful, so now I have now been diagnosed with post-thrombotic syndrome which will be monitored, and was prescribed some Cream to help with the itchiness and reduce the risk of getting open wounds or ulcers.
My advice
If you experience any abnormal swelling, discomfort, discoloration, or difficulty breathing, please see a doctor. Do Not ignore your body’s warning signs.
