In January 2008, I was 22 years old, studying my PGCE with the hope of becoming a primary school teacher, & planning a wedding for the following year. From the outside, my life probably looked pretty perfect! There were a few times where I noticed that my breathing wasn’t quite right, I couldn’t walk & talk to my friends at the same time & walking upstairs was becoming significantly harder. I went to the GP & was diagnosed with asthma, so I thought it was probably that causing the symptoms.
The following month, I decided suddenly, that I wanted to leave my teacher training, even though I was only a few months away from qualifying. Everyone thought that I was crazy, but for some reason, I was struggling to cope on the course & was determined to leave.
I was so upset to find that I found jumping on the trampoline almost impossible;
March came, I was job hunting, & decided to start trampolining with my friend. I was so upset to find that I found jumping on the trampoline almost impossible; I literally couldn’t breathe & felt so faint. I thought I was just extremely unfit! I laid on the trampoline & ‘jokingly’ asked my friend to call an ambulance, whilst trying to put on a brave face. My friend said that my lips looked really blue, but I thought it was probably because I was cold.
I just kept telling them that it was asthma & that I’d be okay!
The following week, I got out of bed, walked downstairs & collapsed at the bottom. I physically couldn’t catch my breath. I frantically searched for my inhaler when I came round, & then spent the day hardly moving from the sofa, waiting for the husband to come home. Despite my Mum & husband telling me that I needed to seek help, I just kept telling them that it was asthma & that I’d be okay! The next day, things were even worse, I felt like I had an elephant sitting on my chest & could hardly breathe when moving a muscle. My soon-to-be husband was having to carry me upstairs to bed, as I physically couldn’t walk up a single step, without feeling like I was suffocating.
The following day, a sunny Sunday, I was convinced into seeing the out of hours doctor. I went there, certain that I’d be given some antibiotics for a chest infection. I was seen, my oxygen levels were checked, & the doctor said, “I’ve just got to pop out & do something”. The next I knew, she returned & said that she had called an ambulance as she thought that I was probably suffering a pulmonary embolism. I started to panic & cry, I’d never been in hospital before & didn’t have a clue what a pulmonary embolism was. Immediately she took me into the treatment room, put me on oxygen & started a drip. The paramedics were there in seconds.
Tests at the hospital showed that I was suffering a massive pulmonary embolism with multiple further clots in my lungs. My family were told to prepare for the worst. I was transferred to the coronary care unit, on a heart monitor & oxygen, in complete denial about how poorly I was. My heart was under enormous strain & was over three times the size it should have been. An intensive care consultant came & sat on my bed, held my hand & said, “you really are very, very poorly”. I had no clue what that really meant.
I was told that, because of the severity of my clotting, I’d be on warfarin for life. I went home to recover, & honestly thought that I’d be absolutely fine, & back to normal in a few months. Little did I know!
The fact that I really could have died, totally hit home
A few years went by, & life continued to be a struggle. Everything was so much harder than before & stairs were my nemesis. I just tried to get on with life, as best as I could. We got married the year after my diagnosis, & it was lovely, but in reality, I really wasn’t well. Not only that, psychologically I wasn’t coping. The fact that I really could have died, totally hit home, & I went for years of counselling, seeing psychiatrists, psychologists, & was put on antidepressants.
Then in 2011, out of nowhere, I suffered a retroperitoneal haemorrhage, which was deemed most likely caused by warfarin as I had no significant injury. I lost 6 pints of blood & it was honestly the most horrific experience; I couldn’t stay conscious, the pain was so intense, I thought I was dying. It was decided that the risks outweighed the benefits, & as it was felt that my initial pulmonary embolism was probably caused by the contraceptive pill, I was taken off warfarin.
Following the haemorrhage, I started to have stomach problems & abdominal pain. It was found that my large bowel wasn’t working properly, & the theory is that the blood compressed the nerves of the bowel, during the haemorrhage. Over the next few years, things got worse, & I was admitted to hospital several times for a “clear out”. Eventually I was given an NJ tube, & later I got a jejunostomy tube, which I used for bowel preparation, as that was the only way I could get rid of the stuff in large bowel.
2014 saw me suffer further smaller clots in my lungs. Although I wasn’t as poorly, it still came as such a shock. I’d been telling doctors for a couple of months that my breathing wasn’t right, & was labelled as anxious, which in itself, was psychologically pretty damaging. I was put on dalteparin injections & as lucky enough to be referred to Prof Hunt, who was absolutely amazing! Following blood tests, was eventually diagnosed with antiphospholipid syndrome, & for which, the gold star treatment is warfarin, which was terrifying following the haemorrhage.
The years following, saw my bowel problems get much worse. I had to go on parenteral nutrition, (intravenous nutrition), as my large bowel wasn’t functioning & the bowel preparation stopped working effectively. Then in 2017, I ended up in intensive care with pneumonia & sepsis, which, as frightening as it was, I thought of as being a one-off experience. Unfortunately, again in 2018, I ended up back in hospital, very poorly with pneumonia. Something had changed with my lungs, although everyone was, & continues to be, unsure as to what, or why I am suddenly susceptible to such serious infection.
In 2019, it was decided that I needed to have an ileostomy formed as my large bowel wasn’t functioning at all & bowel preparation was no longer effective. In January 2020, my new friend, Izzy the ileostomy was born! Honestly, stoma life has been rough, & a massive learning curve. Unfortunately, my ileostomy has meant that I haven’t been absorbing warfarin properly, & my INR has hardly been in range, so just recently I have been started on long term fondaparinux injection instead, which so far I seem to be getting on much better with.
Last month, terrifyingly, I ended up back in intensive care with severe pneumonia, again. My lungs completely collapsed at the bottom & I ended up on CPAP & was more poorly that my previous admissions with pneumonia. I have chronic thromboembolic disease from the initial massive pulmonary embolism, & it was felt that the combination of that, & the pneumonia, meant my lungs just couldn’t cope. I’m yet to undergo further investigation to determine whether there is any permanent deterioration of my lungs, or why this keeps happening, but in all honesty, I’m frightened. It’s fairly early days in terms of recovery, but since my most recent admission, everything seems so much harder, & stairs have become almost impossible again. Right now, I’m so worried about what this all means & whether there has been any longterm implications, or whether I’m going to get super poorly with pneumonia, again. I have always been told that pulmonary hypertension is a possibility in the future, so I guess I always panic about whether that’s the cause of any deterioration.
Blood clots have taken so much away from me
Honestly, blood clots have taken so much away from me. I’m desperate to have a baby, but respiratory tell me that my risk of dying is “unquantifiable” because of everything that’s happened & continues to happen. It’s taken away my career; I was always such an ambitious person but suffering the chronic consequences of my blood clots, means that it’s been impossible to pursue my ambitions.
My experiences, however, have made me passionate about raising awareness, as I’m so determined to prevent others from suffering a similar fate! If I knew the warning signs, back in 2008, then maybe I wouldn’t have got SO poorly, & the catastrophic events that have followed, might not have happened. I guess we’ll never know.
Despite everything, I count myself as very lucky; not only to still be alive, I’m so grateful that I have a really wonderful family, an amazing husband & friends
Despite everything, I count myself as very lucky; not only to still be alive, I’m so grateful that I have a really wonderful family, an amazing husband & friends, who have supported me through everything. I’m also fortunate to have a great team of doctors on my case, which is so important as I will continue to suffer the consequences of my clots, for life.
There’s always sunshine after the storm, no matter how tiny that glimmer of light may be!