A lifelong battle with blood clots—and finding strength, hope, and purpose along the way
My clot story has been a journey and a half, starting back in the early 1990’s. It was initially thought that I had pneumonia. I was finding it difficult to breathe with a dry, deep, echoey cough I’ve never experienced before. The only way I could get comfy was to kneel on the floor and lean over the sofa, I even slept that way.
I went to hospital and they gave me a VQ scan (which is not used so much now) and some blood tests which showed a high probability of a clot.
I was admitted to hospital and given a heparin pump machine and some fancy stockings, which were interesting! Initially I was bed bound for a few days as they didn’t want me moving around until the heparin had taken effect. Being told if I was to be very mobile the clot might dislodge was very frightening. My blood was being tested every day until they reached a therapeutic range. Everything is being done to you, and it can feel like a process which is never going to end.
The medics explained that I would have had a DVT but not necessarily been aware of it – but it would have broken away and travelled to my lung.
I got through the first clot ok and was discharged, still on warfarin and was attending the anticoagulation clinic. About 2-3 months later, I went to the GP because my left leg was swollen with a burning feeling. I was sent to A&E and had another scan and blood tests which showed my INR was under the therapeutic range. They confirmed a DVT, and I was again admitted, back on the heparin pump and wondering is this was it going to be like from now on.
After the 2nd clot, about a year later I was visiting friends and my left leg was swollen again but not red or burning, I thought I had a strained muscle. Then all I can describe is it felt an explosion in my calf which was a bit freaky. My leg started getting even more swollen and warm, so I went back to A&E where they confirmed a DVT had broken away.
I was admitted again and although not symptomatic for a PE I was put back on heparin and treated for a PE to be on the safe side.
My medication after my first clot was meant to be short term but after the 2nd clot, I was left on the warfarin. After this time with what felt like the explosion in my leg, the Haematologist came to see me and said he felt it would be safer to increase my therapeutic range to 3-4, with a target range of 3.5 and that I’d have to be on warfarin lifelong.
It impacted my mental health at the time, I had no support around and when you get told you’ve a condition that’s lifelong or treatment that’s lifelong, everybody copes differently. But when that kind of news is delivered there’s no mental health support brought in alongside, it’s quite sad. It makes you feel like a prisoner.
I was assessed by a consultant haematologist in the late 1990’s and he mentioned Hughes syndrome (sticky blood) or Antiphospholipid syndrome as a possible cause of my clots but he couldn’t make the diagnosis as it would have meant coming off warfarin with a few blood tests over a period of time, and it was highly dangerous to stop my warfarin.
Sometimes the medics are too honest with you. Like you want all the info but how it’s told to you is scary. One said to me, “Has anyone ever explained to you that if clots aren’t treated, they could burst and potentially that’s why people just drop down?” I thought wow you’ve got a death sentence over you.
I’m still on warfarin and have asked about more up to date anticoagulants but because I’ve been on warfarin for a long time it would be complicated to change. There are less blood tests with the newer ones and that’s one thing I’d change about my situation. It’s irritating when you need a procedure like dental work and I’ve to come off warfarin and onto something else – I think they call it a bridging process – then off that and back on to my warfarin. I need quite a lot of procedures so it’s frustrating, I wish they could invent a pen like they have for diabetics.
I can still get pains in my calves which is damaged blood vessels, and it stops you in your tracks sometimes. But I do a lot of volunteering with different organisations including RNIB and South Yorkshire Sight loss council as I have Cerebral Vascular Disease. I enjoy meeting friends for coffee and a chat and like stand-up comedy. I’ve got a diploma in Criminology and enjoy true crime.
If I could say something to someone experiencing a clot for the first time, it’d be if it’s affecting how you feel and what you think, that’s natural, but you do get through it. You will start to feel different and when you feel better you think better. There is hope for the future, you don’t have to let it define you as a person.
I would encourage someone that if you do feel traumatised by it and it’s affecting your mental health, don’t be afraid to speak up and ask for help.