National Committee member Margaret Young writes -
Thrombosis prevention is not simply an important issue but has a personal dimension for Women for Independence. Even if you don’t realise it now, it probably has a personal dimension for you.
As a member of the National Committee, I asked our national group to support World Thrombosis Day #WTDay15 (www.worldthrombosisday.org on 13 October to raise awareness and prevention of deep vein thrombosis (DVT) and pulmonary embolism (PE). You may also see these two conditioned grouped together and called VTE.
My reason for asking this was because two young women in my family had suffered pulmonary embolisms. Neither had been in what I would have classified as at higher risk – neither had been on a long flight without flight socks for example – so not a lack of “socks on a plane” scenario. One was my daughter Elizabeth who had a pulmonary embolism in 2014. On occasion, Elizabeth has given WfI professional advice and so is well known amongst many on the committee.
Then National Committee member Michelle Rodger told us that she also had had a pulmonary embolism and was also keen to raise awareness. So there is a personal aspect for WfI which means we understand the acutely, the results of an undiagnosed VTE. We are keen that our members and other are aware that most VTEs do not happen on a flight. The most likely scenario is that you have been in hospital and develop a DVT or PE after you have been discharged. This year World Thrombosis Day is focussing on this preventative cause.
As you will see though by reading Elizabeth and Michelle's personal accounts, there are different reasons why you might develop a clot and diagnosis is not always a given so persist with your concerns to your GP or hospital. Many people suffer no symptoms but if they do, the RCN tell us, for most the most common symptom is pain and not the swelling as many think.
WfI will come back to this subject in the future as we are looking further at health strategies surrounding this issue. If you have a story to tell then contact us via our email.
“I still don’t really know when my problems started. There’s no incident or event that I can pin down and say ‘that’s when it all started’ – that was the trigger or those were the tell-tale symptoms. What I can say is that I was ill for a long time and that I’m lucky to be here.
I started to feel unwell in the spring of 2014. I was heavily involved in the referendum campaign and I was out leafletting a lot, but rather than seeing my fitness improve I was really struggling to keep up. I was so short of breath that at my worst, I could barely walk for 10 minutes without stopping. I finally decided to go to my GP when I started to develop numbness in my leg as well.
Several GP visits later and I had an asthma diagnosis, an inhaler and an assurance that the numbness was nothing to be worried about. My health continued to deteriorate, with the pain becoming so bad that I couldn’t put weight on my leg and two further GPs visit earned me prescriptions for max strength painkillers, a diagnosis for a pulled muscle in my thigh (my own fault for being overweight, apparently) and a referral to a very confused physio who couldn’t work out what was wrong with me. However the physio exercises did seem to help and the pain began to ease.
Fast forward about a month to a nice sunny Sunday, a few short weeks before the referendum. After another day’s leafleting I was really suffering. My back ached and I could hardly breathe. Deep down, I must have known there was something really wrong with me as I asked my mum to keep her phone beside her during the night so that I could reach her if I felt ill. I woke during the night in unbelievable pain, having what I can only describe a fit but fortunately I managed to reach my mum who got an ambulance and the rest, as they say, is history.
Once of the first questions the A&E doctor asked me was if I had a sore leg. I can still remember the mixture of confusion and annoyance I felt wondering why she was examining my leg when I quite clearly couldn’t breathe… It turns out she had picked up on some pretty classic DVT/PE symptoms (that the previous four doctors had misdiagnosed) and had she not done so, its unlikely I would have seen out another 24 hours.
After a spell on warfarin, I went for blood screening where they found I had Factor V Leiden which is a gene that makes your blood more likely to clot. That, coupled with being on the pill (which also raises your risk of a clot), meant it was really more a case of ‘when’ not ‘if’ I was going to develop a one.
I’ve since heard from several women I know who told me they’d been through something similar to me and I’ve heard about several more who sadly weren’t lucky enough to make it through. Given that the pill, pregnancy, motherhood and HRT all increase your risk of developing a clot and even though 1 in 20 Scots carry a gene that makes their blood clot more easily that normal, very few people (including those who’ve had a clot) are ever screened, it’s not a surprise that so many women go through this. I’m just glad I’m able help raise awareness and hopefully stop other women from going through what I did.”
“It’s the silent killer. Often mistaken for other things, in my case, asthma.
Despite telling the hospital staff that this felt very different from an asthma attack (I wasn’t wheezing, it felt as if someone, a very heavy someone, was sitting on my chest), they insisted on nebulisers and steroids for a full 10 hours before a junior doctor realised I was wearing a cast on my leg and put two and two together.
My story started on a cold January morning at Bellahouston Ski Centre - my first skiing lesson with a friend. Needless to say it didn’t go well, and I was on my way to hospital to get my ankle checked out when I got a call from my mum to say that dad, who was fighting cancer, had just been admitted suffering from an infection.
As I hopped through the door at A&E the first person I saw in the waiting room was my mum, sitting anxiously hoping against hope that there would be good news about my dad. I gave my details at reception and when asked for next of kin I said “the man you’ve just admitted into rescus!” Things moved quite quickly after that; they sensed how ill my dad was and I was x-rayed, diagnosed with a broken bone in my leg, just above my ankle, and torn ligaments, put in a cast and wheeled over to where my dad was being treated - all in less than 40 minutes. I spent the next 30 hours in hospital, leaving just after my dad died the following afternoon. The next week went by in a haze of funeral arrangements and childcare challenges, I never stopped to sit down and put my feet up, there was no time.
A few days after the funeral I started to feel quite breathless. My doctor put it down to asthma, I’d had an attack just before Christmas, and so she put me on steroid tablets. But it didn’t get better, it got worse. I felt as if I was walking through treacle, fatigued with the breathlessness, seeing stars every time I moved. A follow up visit to the doctor made no difference, I was told to return the following week if the tablets still weren’t working.
But I eventually collapsed and fainted and was taken to A&E. Immediately they popped me on a trolley, covered me with a blanket and started treating me with a nebuliser. As I said, it didn’t work but it wasn’t until a junior doctor put her hand on my blanket-covered leg, a full 10 hours after admission, and realised I was in a stookie that the lightbulb went off and she diagnosed a clot.
It being a Sunday, there was little they could do in terms of scans, but the basic blood test showed I had a clot so they started me on Heparin and Warfarin. It was the Wednesday before I was scanned, and a very concerned doctor told me later that day that I had significant clots in both lungs. I wasn’t worried or scared, I was just relieved that they had found out what was wrong with me and could stop the nebuliser I was having every few hours.
I didn’t appreciate till after I was released from hospital two weeks later just how serious my condition had been. Researching PTE (Pulmonary Thrombotic Embolism) terrified me. I read about the number of deaths from misdiagnosis or even non-diagnosis and realised just how lucky I had been. I spent six months on Warfarin and underwent numerous tests to find out if I had a blood condition that would have caused the clots. I was asked if I was immobile for a period of time after the accident because that could have caused the clot; clearly not, I was only immobile when I was sleeping, and I wasn’t doing an awful lot of that.
I was incredibly lucky, but the thousands who die every year from this silent killer are not. I genuinely hope that World Thrombosis Day will raise awareness, not just amongst the medical profession, but amongst the public too, to prevent further needless deaths and heartache.”