Death, doctors and life ahead
This is a reflection of my experience with pulmonary embolism; thoughts, fears, dealing with doctors, and the way forward.
Stats and the prospect of death
About a month and a half ago I suffered from deep vein thrombosis that culminated into a pulmonary embolism (PE). While I did not initially realise the importance of the whole incident, seeing Sunshine’s face upon the doctor’s announcement was enough to start worrying. The anxiety was heightened upon reading the statistics, which indicate that 25-30% of those who suffer from pulmonary embolism die as the disease is silent and remains untreated. A subsequent 10% of those who receive treatment die within a year. Not the best of odds. Thankfully, my good friend R., a haematologist, called immediately upon hearing the news to give me some much-needed context, which boiled down to an advice not to worry too much and to avoid obsessing over it online. This is because PE is a frequent complication for people with a lot of other quite serious underlying issues, including cancer, that drive up the high mortality rate. Young fit persons such as myself who are lucky enough to get diagnosed on time and who start medication before any serious damage, tend to do well and are unlikely to make their way into that 10% morbid statistic.
Nevertheless, I cannot escape the fact that I found myself in a potentially life-threatening situation. It took a couple of weeks to reflect on it, as I was initially in a numb state of passive acceptance, which was possibly driven by an instinct for survival. I was just taking it slow, following religiously the doctors’ orders, hoping for the best. Towards the end of the second week, and further to a couple of inquiries by some of my closest friends, I started thinking of the what-ifs. What if I had died? My mind went immediately to Johnny and the forthcoming baby. It is, of course, utterly shitty to be raised without a dad, but I know that Sunshine is strong and would be able to provide both the emotional environment and the financial stability necessary for them to have decent childhoods. I then thought of Sunshine, who would have been the most disadvantaged of the lot. I hope that if it came to it, she would have followed my wishes to keep the mourning brief and rebuild her life. Macabre, I know, but such is the topic of today’s discussion. Then it was my parents and the tragedy of losing ones’ child; a devastating scenario, hard to recover from it. My siblings and close friends would be impacted, of course, but eventually life would have to go on as it always does. Hopefully they would form a strong support network around Sunshine. As for the rest, I didn’t really have many thoughts – some may notice, most won’t, and that’s life.
I didn’t have a lightbulb moment where I rethought my priorities in life, but I also didn’t experience a heightened fear of dying. Instead, I had massive anxiety on the likely prospect of another embolism, fearing that it would leave me either disabled or with a substantially altered lifestyle. This has subsided but it’s still lingering. I also fear the side effects of the nasty medication I’m taking (ironically, these include anxiety and depression, as well as loss of energy, hair and other nice things). Apparently, heightened anxiety and depression are quite prevalent among pulmonary embolism survivors; something akin to post-traumatic stress disorder. However, none of the ten doctors I visited even considered the mental health aspect of this experience. Zero inquiries beyond my physical state have been made, which seems aligned with the general deprioritisation of mental health issues in Cyprus.
I was expecting that I would rethink my priorities a bit, meaning that I would stop worrying so much about work and that I would be able to appreciate the important things in life, such as time spent with Sunshine and Johnny, being surrounded by friends and so on. That didn’t happen. It was only in the first few days that the internal voices that typically nag me kept silent. A week later, and as I had to take time off work to visit the various doctors, those voices came back screaming, bombarding me with the usual concerns. I guess people don’t change; we are, after all, our own best prisoners.
Before I was discharged from the hospital they sent about ten vials of blood for testing. The results were released a couple of weeks later. The pulmonologist told me that I have a small genetic predisposition for clots (called Leiden V heterozygous), which means that my chances for a clot are five times higher than those of an average person. However, in itself, this genetic predisposition is not enough to “explain” what has happened. She then inquired into some further results that were pending, only to find out that I tested positive for what is known as the lupus anticoagulant, which can be an indication for a fairly nasty condition called Antiphospholipid Syndrome (APS); a condition that would require constant monitoring and a difficult medication. I was, however, told that it may have been a false positive. At the same time, I was asked to undergo many exams, including cancer screenings. In the intervening period I visited my GP, a gastroenterologist, urologist, pulmonologists (2), hematologists (2) and a vascular surgeon, and had various intrusive and non-intrusive tests done, including a colonoscopy, gastroscopy, doppler scans of my legs, chest x-ray, chest CT, abdomen ultrasound, abdomen CT, as well as various blood tests. Suffice to day, I’m fed up.
Being the geek that I am, I prepared a dossier with all the relevant documentation, mostly exam results, archived chronologically and accompanied by a summary page with the timeline; essentially creating the ideal medical file. This helped a lot considering that most doctors dedicate approximately 20 minutes per visit and I would rather receive their expert advice and have them answer questions rather than sit there watching them try to navigate the mess that are hospital files or having to give answers to questions that have already been answered in the documentation. This proved quite effective.
Once it became clear that my lungs and heart have not been affected, and that the cancer screening was clear, the torch was passed from the pulmonologists to the hematologists. The latter are, apparently, the authority when it comes to blood clots. Both haematologists I visited, agreed that I don’t have APS, and that what happened can be attributed to a combination of factors – the trauma I had on my foot and the genetic predisposition. Interestingly, both clarified that blood clots are multifaceted phenomena and told me in no uncertain terms that I should stop trying to identify one single factor behind this. Nonetheless, the fact that they attributed it to something, means that the clot that led to the embolism was provoked, and thus I will not be on nasty medication for the rest of my life and that, theoretically, I won’t have to constantly be on the lookout for the next potentially fatal clot. Both also advised that it’ll be safe to have the third dose of the vaccine once that is available, seeing as it is unrelated to what has happened to me.
The way forward
I had the last exam on Tuesday. It appears that if the results are clear, I’m done for a while. The hematologists stopped the daily double injections and prescribed pills. I’ll see them again in three months. I’m feeling a bit drenched at the moment and only just managing my anxiety, but I’m glad that I’ll be able to hopefully resume my life. I have a lot that I want to do – get back into exercise and sort out the load that accumulated at work.
As far as exercise is concerned, I somewhat resumed training, but I’m nowhere near where I used to be. That’s fine for the moment. I haven’t run much, as I get carried away and my heart rate jumps to 180 beats per minute. Instead, I mostly do easy rides on the bicycle, which I don’t really enjoy as my addiction is not so much with exercise as with reaching a state of near exhaustion where bliss lies – the endurance athletes among us would know what I mean. But it is what it is and life goes on.
As a bonus, I’m glad to report that I haven’t had a single sip of alcohol or coffee, or a hint of nicotine since the day I was hospitalised, which is now almost 60 days ago. I’m glad to have broken these addictions, though I can’t say that I feel substantially better. I’m surprised to read the hundreds of online testimonials of people who report massive improvements in their lives after getting off any of the three substances. I suppose I wasn’t overindulging to the extend I thought I was. I guess I’ll continue doing what I do, as it seems to be working.
diary death PTSD thrombosis DVT pulmonary embolism xarelto clots blood clot