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Thrombosis: 'I left hospital with no real understanding of what had happened to me'

I want everyone to know that blood clots can affect anyone, male or female, young or old, fit and healthy, writes Ann Marie O’Neill.

Ann Marie O'Neill Thrombosis Ireland

IN 1983, MY appendix burst and I had emergency surgery to remove it. After this I developed adhesions which caused me to have another five surgeries for bowel obstruction.

In 1995, I developed gallstones while pregnant. I delivered my son in February of that year and three months later had surgery to remove my gall bladder. Within just a few days of surgery, I was back in theatre again with another bowel obstruction due to adhesions.

I had undergone two surgeries in two weeks followed by a hospital bug to make matters worse. I was extremely dehydrated and immobile, and a week or two later I couldn’t breathe without feeling a really sharp pain in my chest. It was at this point that I was first diagnosed with a PE (pulmonary embolism) and was prescribed anticoagulation drugs for a period of six months.

I’d no real understanding of what had happened

I left hospital with no real understanding of what had happened to me and why, and whether it was life threatening and could strike again.

Five years later in 2000, I was back working a busy, full-time job, when I found myself with chest pain once again. I decided to ignore it and focus my attention instead on meeting a tight deadline at the time. I had my suspicions of another PE but didn’t realise that it could be fatal to ignore such symptoms.

I was driving on the M50 maybe two weeks later to go shopping in Blanchardstown with my two boys when the pain became acute and I had severe difficulty breathing. I pulled in, called my husband and asked him to meet me in the nearest hospital.

I had another pulmonary embolism

After heading straight to A&E, tests confirmed that I had another PE. I was admitted for a full week and was then put on anticoagulation drugs indefinitely. I was beginning to think that I might have a real problem but nobody actually sat me down and explained exactly what was happening, that it may happen again or how I could protect myself going forward.

A year later, I became pregnant again, increasing my risk of another blood clot. I was looked after by the team in the National Coagulation Centre for the duration of my pregnancy and I was put on daily injections of anticoagulation treatment. My son was born fit and healthy, I continued my anticoagulation therapy and was advised against getting pregnant again.

In 2012, I needed a procedure which involved an injection into my femoral artery which resulted in another blood clot at the injection site. I experienced the excruciating pain of the blood supply suddenly being cut off, yet still, I believed the doctor when he said I was fine and it wasn’t a clot. I was discharged and put on painkillers, but a few days later a nurse friend of mine noticed me limping and advised me to go back to the hospital. If it was not for her my blood clot may never have been detected and I most probably would not be here today.

I had surgery to remove the clot a few days later but there was damage to my artery and it clotted again. I then had further surgery to put in a bypass but again I suffered another clot. Doctors tried yet again to clear the blockage but the outcome was the same, another clot. Six weeks later, I finally went home, still taking pain relief and realising the blood supply to my leg would never be the same again.

20 years later and I was no wiser

20 years on from my first blood clot and I was no wiser. It was at this point that I started asking questions and investigating the condition. I had no real understanding of what was going on and I never met and spoke to anyone with the same issues as me. I had two pulmonary emboli, various blood clots in my femoral artery and a pregnancy spent worrying about my unborn baby, with no one to talk to that understood what I was going through.

I searched and found English and American resources and they were helpful but did not relate to the Irish health system. I decided to look at setting up an Irish Thrombosis awareness and support group.

I know that I am lucky to be alive. I have survived three potentially fatal blood clots for which I now live with the side effects. I can’t walk very fast or run, and hills and stairs are a challenge, but all things considered I am so happy to still be here and alive.

I am now aware of the signs and symptoms to watch for should it happen again and I also know how critical it is to seek immediate medical attention if I suspect another blood clot. Knowing the reality of what I am dealing with and knowing what to do when if I’m at risk makes me feel safe.

Blood clots can affect anyone

I want everyone to know that blood clots can affect anyone, male or female, young or old, fit and healthy and they can be fatal if we don’t know what to look out for. A little knowledge can truly save your life. In an effort to create awareness, I have set up Thrombosis Ireland, a group that aims to give support to patients and their families.

We want to increase knowledge and understanding of blood clots amongst medical professionals, government and the public, as well as improve treatment, services and facilities available to those affected by blood clots or on anticoagulation therapy.

By empowering people affected by blood clots to take control of their own health, they can live more confident and independent lives.

Ann Marie O’Neill, founder of the patient support group Thrombosis Ireland, lives in Firhouse, Dublin, with her husband and three children. Thrombosis Ireland, in partnership with Bayer, has launched a national awareness campaign called #Time2Move for World Thrombosis Day (today 13 October) to educate the public about the risks and preventative measures for deep vein thrombosis (DVT). To learn more about DVT and ways to reduce blood clots visit thrombocoach.com.

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Ann Marie O'Neill  / Thrombosis Ireland

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