For the last five years life has been a rollercoaster.
In 2006, aged 20, I had my first blood clot. My arm swelled up, and it wasn’t until it started to turn purple and was too painful to move that I gave in and went to hospital. I was lucky to have the DVT diagnosed immediately; I was given heparin and warfarin and was admitted to hospital for a week. After six months of warfarin I went through all of the blood tests and scans to check for causes, but no reason was found. It was concluded that the cause had been the combined pill (which I had been on for a month), a long train journey and a gym session in which I had been lifting weights behind my head. I was told it should not happen again, so went on with my life as normal. I think the denial that I went through that there was anything really wrong made this quite easy for me.
Unfortunately the doctors were wrong. In 2008 I had another blood clot, and went through the same ordeal of warfarin, heparin, blood tests and scans; as well as nerve conduction tests. Again, no underlying condition was found, and this time no obvious action seemed to have caused the blood clot. It was at this point that I finally stopped being in denial and (with the help of my family) started to push for answers. I started to realise that if I wanted a diagnosis, I would have to learn more for myself and be proactive in consultant appointments, as well as seeking out alternative opinions when I wasn’t satisfied with the answers I was given.
In summer 2009 my determination was rewarded when I was finally diagnosed with Thoracic Outlet Syndrome. A simple pulse test identified the condition and it was later confirmed by venogram. Unfortunately this did not stop me from having another DVT the following December. It was decided at this point that the best action would be to have my first ribs removed. The first operation was scheduled for March 2010, but due to various obstacles, did not happen until August. I had the second surgery the following November. Recovery took around three months for each operation, maybe four months before I really started to feel human again.
Now, six months after the second surgery I am finally starting to feel back in control of my life. I am starting to get my energy back, and with it my social life and career. My INR is finally starting to stabilise and I should be coming off the warfarin soon so I can say goodbye to regular blood tests! I know that I will always have to be careful about overusing my arms, but it feels so good to have got a diagnosis and done all that can be done.
One of the hardest things about the last five years has been the uncertainty and the lack of information about UE DVTs and Thoracic Outlet Syndrome. DVTs are so common, but finding another person that had a similar story to me seemed impossible. I am proud that I have made it through the hard times of this condition and that I have gone on living life; graduating from university, living in Switzerland for a year, visiting family in Australia and making a life for myself in London, despite all of the challenges along the way. There are definitely times when I felt hopeless, but life does go on and time heals most things.
I hope with the help of Lifeblood those with conditions such as Thoracic Outlet Syndrome can gain support from other sufferers and know that they are not alone. I am always happy for people to contact me through Lifeblood, whether for advice or for a friendly ear.