Covid-19, Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE):
case study of an undiagnosed coronavirus patient
Image by Gerd Altmann from Pixabay.
I returned at the end of February from our company’s inaugural Iberian Discovery Tour. It was a unique experience accompanying retirees from around the world and who were considering moving permanently or semi-permanently to Southern Europe. In that visit, the group of 17 people covered five different regions in Iberia, including Porto, Lisbon, the Algarve, the Costa Blanca and the Valencia coast. The trip was absolutely fabulous and the participants could not have been generous in their praise of the entire experience.
We completed the trip just as the first bits of news of a new virus, Coronavirus or Covid-19, began to circulate. At that stage, the first cases in Spain were reported on the Canary Islands, with a well-publicised lock down in a 5* hotel. In our group, two people who had developed a cough started to wear masks as news of this virus started to permeate news channels. Among all this, I was conscious that there was a little-publicised piece of news that one of Spain’s first mainland cases had been in Valencia, one of the cities in which we had spent a number of days.
Bearing all this in mind, when I returned home to the UK at the start of March, I decided to self-isolate for two weeks, mainly to try to protect my family. This was at a time when no official government advice had yet been published about the rules which would come to govern society in the coming weeks. During this initial period of isolation, I did not leave the house and tried to have sensible but limited contact with the rest if the family. Two weeks passed, I was fine and thankfully, so was my family.
On Monday, March 16th I played tennis with one of my sons. The day was glorious, the courts completely empty. It was such a warm day that I played in a T-shirt. Towards the end of the hour’s knock, I felt a breeze on my chest and a thought occurred that perhaps I should put my jumper on again. But it was very warm and I decided against it. That evening I had a tickle in my throat, usually a sign of a cold.
The next day I still went out to do some shopping as we had already started to reduce the number of trips to grocery stores, but needed some things and my wife was, as a pharmacist and therefore a key worker, unable to go out that day due to having to help out at a large regional prescription processing facility.
My battle with Coronavirus
Over the following few weeks my situation worsened considerably and it was impossible to keep a detailed diary as breathing difficulty, lack of energy, the inability to walk more than a few paces and some moments of delirium all contributed to a period when I was almost completely bed-ridden.
During that time I used the 111 online service, answering the questions, only to be told that the advice was to self-isolate for 7 days and for the entire family to do so for 14 days. After 3 days, a further 111 online consultation repeated the same advice. And the stark warning on the NHS site made it clear: “only call 111 if you cannot get help online”. Frankly, not wanting to take resource from someone who might need it more urgently, and because so much information had reiterated that the best solution was simply to stay home, I finally decided, because I felt I needed help, to call my local GP Surgery. All credit to my wife who insisted that this was the best route to take under the circumstances.
So finally on the 26th March I called the GP Surgery and asked for a call back. I got a call back from a doctor at the GP Surgery. When I took the call, I was seated, in a resting position, and despite a small coughing fit, to the doctor on the other side I must have appeared to be a patient without many symptoms. The focus of my conversation was on the fact that I was spitting up phlegm and so the doctor prescribed Amoxicillin for what he considered was an infection. In his words, “normally we would avoid antibiotics but at these times, we are relaxing our rules”. I found that statement interesting, to say the least, because it appeared as though doctors were prepared to try the use of antibiotics even if their suspicion was that the problem was viral and not bacterial. Nonetheless, I was thankful we were trying something other than the status quo, which was clearly not working.
On the 31st March, I finally managed to do some work without feeling the need to immediately rest. Nonetheless, the infection did not clear up and the doctors prescribed a second antibiotic, Clarithromycin.
On the 6th April, I had a further call with the GP Surgery, because I had a lot of pain in my muscles, and had read that this was a potential side effect of the antibiotic. Unsure of whether the pain was being caused by the virus or the medicine, the doctor nonetheless confirmed that with around two days left of my treatment, I should continue to take the antibiotic. The muscle pain did not change significantly, and in hindsight it was probably the correct decision, because the pain was almost certainly due to the illness. It also meant that the secondary infection appeared to have been cleared up.
On the 8th April, I asked for a further call with a doctor at my local GP Surgery, and having had the idea of walking up and down the stairs to demonstrate just how out of breath I could get after minimal physical exercise, the doctor asked me to come in for a reading of oxygen levels. The examination would be in a unit which had been specially set up for those suspected of having Coronavirus, and approximately 25 days after falling ill, this was the first time that anyone in the health system acknowledged a link to the virus. In the doctor’s words, “you are a prime candidate for Coronavirus”, based on a description of my symptoms. I did wonder: why then did no other doctor come to the same conclusion when I had been exhibiting these symptoms for weeks on end?
When I visited her later that day, I went in masked, and she was gloved, masked and behind a plastic protective face shield. We measured oxygen levels which were, fortunately, normal at around 97-98, and these did not reduce when I walked quickly between chairs in the consultation room. Since the onset of symptoms, this was the first time that any testing of any sort had been done. Not only did it immediately provide a scientific basis for decision-making, namely that there was no need to be admitted to a hospital for oxygen, but psychologically, it released a worry that had been hanging over the entire family. Not knowing what my medical state was, had cast a pall over the spirits of all our family members. It was only when I heard the relief in my wife’s voice that I realised the extent to which my illness had worried the family, both in the same household and overseas.
The advice given was to continue to monitor my breathing. I returned home to continue the slow recovery process. For a week there seemed to be a gradual, but tiny, improvement in both my coughing and breathing.
The shift from Covid-19 to its serious consequences
And then suddenly, a week later, on the 15th April, I regressed. After not having left the house for a month (other than to visit the doctor), and with doctors confirming that I was no longer contagious, I went out to do some essential shopping with my wife. During the shop, started to feel unwell. I managed to complete the shop but had to sit in the car for a long period while my breathing recovered. I then drove home, but my breathing was extremely laboured and the frequency of coughing had definitely increased.
In addition to the lack of testing and the absolute refusal to make referrals that we had observed until this point, we also analysed, after the fact, the missed opportunities by medical professionals from this point forward.
On the Thursday, April 16th, we called the doctor who decided that measuring levels of oxygen and temperature (their thermometer was not functioning but I was confident I did not have a fever) and checking the lungs, would be sufficient. A major symptom was missed here and the doctors failed to act: the doctor failed to recognise the increase in severity of both pain and breathing difficulty, with anything else, and failed to think beyond the Covid-19 “box”. It is clear to us, in hindsight, that medical professionals’ ability to apply the full body of medical evidence appears to have been constrained by an absolute fear of the virus.
After that test, we were still concerned about why the breathing was so laboured and painful so we decided to call a private hospital. Their response was that they were strictly following NHS guidelines and would not deal with any patients showing Coronavirus symptoms.
Over the next day, symptoms became worse and my condition deteriorated again, in particular shortness of breath. The sputum started to show traces of blood. I spoke to another doctor on the 17th and he felt these were symptoms linked to the virus and that the risks of admission to hospital outweighed the benefits of access to diagnostics such as a chest X-ray. A further major symptom was missed here and the doctors again failed to act: the addition of blood in the sputum, added to severe chest pains, is a clear indication of one of three possible causes, ranging from pneumonia to lung cancer, all very severe, and all of which require immediate diagnostics. The doctor should have, at that moment, immediately proposed hospital admission.
On the 18th, after an absolutely terrible night of pain and respiratory difficulties calling the NHS111 services and answering a series of questions, I got a call back from a triage medical professional who was concerned about the fact that my breathing was laboured, even when in a rest position, and that I had coughed up blood for the second day. He then passed on the call to 999, who sent an ambulance.
The ambulance repeated many of the tests and felt that there was no need to go into hospital for any other tests. However, a further warning symptom was missed here and the paramedics failed to correctly refer on to a hospital. The ECG showed clearly an irregularity with the V2 reading, indicating possible right ventricular hypertrophy, and as the right side of the heart is linked to the pumping of blood to the respiratory system, it should have been a clear indication of the need for further quick investigation of the lungs, with one possible cause of the straining of the heart being a clot in the lung.
Over the weekend, on the evening of the 19th, I finally managed to get the first full night’s rest, albeit in three parts:
- A 3.5-hour stint in a lying position but with the torso completely elevated (as in a sitting position), where breathing was normal and no coughing,
- An approximately 1.5 hours section where I attempted to lie flat but had to manage the acute pain from the barb-like intense pains, which I thought were caused by involuntary contraction of intercostal muscles. I managed to final find a pressure point between 4th and 5th ribs counting from below, and when the pain was too strong, a solid downward pressure seemed to provide some relief. However, it was not a practical long-term solution so I eventually had to give up. Attempting to return to the previous position was extremely difficult because of the position of the chest muscles and their reluctance to willingly cede. Working through excruciating pain, I managed to, in about 15 minutes, be back at my previous position. Another 5 minutes to regulate my breathing
- 5 hours approximately of rest in the semi-seated position with a headrest.
On Monday 20th, on reporting back to the local practice GP, he initially suggested that we should remain on a monitoring track. I offered to send an electronic copy of the ECG especially to further investigate the V2 and possible hypertrophy, but he turned down that offer, saying that at some point in the future, it could be added to my patient record. Again, an opportunity to use scientific data to analyse the situation, was discarded. I felt at this stage that I was in an echo-chamber of doctors repeating the same thing: it’s Covid, stay at home, rest and isolate.
In the early afternoon the doctor had a change of heart. He called me back and said that based on the repeated blood in sputum incidents, he was recommending I go into hospital to get an X-ray done. He said that, notwithstanding the risk of contamination in a hospital environment, because the department did not involve any contact with Covid patients, I would be in a relatively low-risk area. We agreed that the benefits of the diagnostics outweighed the risks.
The X-ray exam happened as planned, with minimal contact with people or surfaces, although I did get the drop-off point wrong and found myself having to walk a huge distance and thinking that I would pass out due to lack of breath!
The hospital said 3 days to get the results to my doctor but because they saw something which worried them, the result was already available the next day, the 21st April. I called in to my GP to report that I had now coughed up, for the first time, sputum with dark blood. He chased the exam and three problem areas were noted: an infection in the lower left lung, possible liquid in the same region which was causing the shortness of breath and a shadow over the heart. Immediately he prescribed more antibiotics, this time Doxycycline, as he felt that the new infection, needed attention. He also recommended a CT scan. Here I also felt that a further opportunity was missed and the doctor should have insisted on admission to A&E in order to get an immediate CT scan. The symptoms and the possible causal links were clear, and having now had the chance to investigate further on the web, it was clear that the doctor had finally made the link to possible causes, but was still not taking (in my opinion) sufficiently fast action.
I waited anxiously for a call regarding my CT scan. After several hours, with no contact received, I called the hospital and was told that someone had tried to contact me, clearly to the incorrect number as my mobile had never left my side. As a backup, because they failed to reach me, the hospital had also sent me a letter that arrived on Thursday 23rd, two days later. After a few more calls, a date for blood tests and CT scan was set for three days later, which according to the doctor was quick, relative to the 14-day period within which the test could be booked. However, we wonder whether those three days, in conjunction with the previous three days, might not have cost me dearly.
The next day I got a call from the respiratory specialist at my local doctor’s surgery, following up. Clearly, the gravity of my situation had now been recognised and I sensed some concern about the speed with which the practice as a whole had reacted. There was nothing new to discuss, other than the fact that I was coughing up more blood in the sputum, mostly in the morning.
During the three days of waiting, I tried to work on four things:
- Pain management, identifying whether Ibuprofen was better than Excedrin (which cannot really be taken at night due to caffeine content), and including position of the body, especially when 24 hours of the day are practically in a sitting or lying position
- Breathing: starting to practice breathing exercises to slow breathing renew lung capacity and reduce panic, when sudden pain attacks or bouts of coughing bring on breathlessness and a sense of loss of control
- Mental management: not thinking too much about possible causes of the X-ray results (lung cancer was one distinct option based on the symptoms I had
- Putting some administrative affairs in order, in particular accounting and legal reporting requirements for the company, in case I had to go into hospital
At the same time, I continued to monitor the amount of blood I was coughing up each day/morning (quantity the same, worryingly dark), the clamminess of my body (which seemed to be gradually improving), and the discomfort felt during the night (which seemed to be improving because for two nights I had been able to sleep for 8-9 hours uninterrupted in a semi-seated position – maybe the memories of many overnight trips on an airplane was coming back!).
The three day wait for the CT scan was interminable. I knew the result would be serious, it was simply the degree of seriousness that was left to be defined. Pneumonia at the “simplest” end, cancer at the other.
When I arrived at the hospital blood tests and CT scan were very quick. Half an hour to complete both. Then an almost two hour wait as they tried to find a specialist to interpret the results. Based on what they saw of the chest and abdominal CT scan, the doctors decided to do a further CT scan of the pelvic area.
Close behind cancer in the hierarchy of dangers was DVT (deep vein thrombosis) and PE (pulmonary embolism). In my case, that is the way the dice rolled. After decades of long-haul global travel, being a million-miler on several airlines and doing dozens of flights a year, it seemed as though Coronavirus forcing me to remain in bed, with little or no movement (because I simply could not breathe), combined with the advice to self-isolate, meaning that I could not go outside the house to take any exercise, had caused a deep vein thrombosis (DVT) which had risen to my lungs. They found a clot in my right leg, a large one in my left lung and several in my right lung.
What I still cannot understand is that in all the literature, and our household has received a fair amount via the post and from hospital, no mention is ever made of watching for symptoms such as coughing up blood, or an increase in chest pain. Given that it is known that most Covid-19 deaths result from respiratory complications, to this day I cannot understand why there is not more medical literature, made available to the general public in much the same way as washing one’s hands or keeping one’s distance, about symptoms pointing to severe conditions that might be caused by Coronavirus. In the absence of these alerts being general, then one must assume that GPs must be the ones who are required (as would be expected anyway given their profession) to establish the link between symptoms and potentially serious conditions. As I lay in the hospital to which I had now been admitted, it struck me how doctors had failed to establish this link quickly enough, despite all the obvious signs.
The irony of the situation, which did not escape me, was that over the course of the next 24 hours, I spent time in a highly contagious ward, exposed to at least 6 people who (while admittedly more than 3 metres away from me), all tested positive for Covid-19, and so I was now a high risk case, either for a re-incidence or as a carrier. So I had been hammered by Covid, failed by the (lack of) speed of the system, and yet remained at risk of contaminating myself and others further. How, I asked myself, can the system be patient-centric if it has so many failings?
The hospital stay was fortunately short, a little more than 24 hours, during which time I even managed to get some work done as my family had brought me my overhead-compartment compliant travel suitcase with clothes, toiletries and essential items such as a laptop! It would be remiss of me not to mention how impressed I was with the hygiene procedures I observed in the hospital while I was there: proper and continuous use of PPE, regular and full disinfecting of the ward (including removing curtains to be washed and the bleach clean of each bed area after a patient departure), adherence to separation of beds within the ward to about 3-4 metres, and a complete isolation (no one was permitted to leave the ward for any reason, until discharged or moved to another one).
An initial anticoagulant injection, probably heparin, was given to start the anticoagulation process. As the hospitals knew I was married to a pharmacist, they fully expected us to take the decision about whether to move to Warfarin or to a DOAC. We really felt that the decision was being transferred fully to us, as patients-carers, although in the end the doctor’s opinion and that of my wife were pretty much the same. I will now have to take Apixaban for several months, until it is possible to test again and see if the body has managed to break down the clots. Time will tell whether my body is able to fully recover or what permanent damage remains. Only in some months will we be able to see more clearly what lifestyle choices and constraints will be necessary. And only when we know that, will we be able to tell whether the several missed opportunities by the health system will have a permanent impact on my quality of life.
Non-exhaustive list of my coronavirus symptoms
- Fever: DAYS 1-3, for three days at the beginning of the illness, treated with paracetamol, liquids
- Persistent dry cough or at least three intense coughing episodes in a 24-hour period: DAYS 1-28. Throughout, much more intense for the first two weeks, so much so that it caused muscle pains including in my lower back which had seized up from the coughing spasms. Bouts of coughing continue even at the time of publishing this article, six weeks after the start of the illness;
- Shortness of breath: DAYS 7-21 approximately, caused by each coughing fit, and requiring complete immobilisation or lying down, to allow the body’s breathing to stabilise. Also caused by any activity beyond 3-4 steps, so walking up a flight of stairs would cause a shortness of breath that required lying down to recover. Also DAYS 30-37 approximately, when I suffered a pulmonary embolism (see below);
- Tiredness/lethargy: Throughout, most acute in DAYS 3-21, and DAYS 30-40. Only managed to recover the ability to concentrate on tasks for a 8-9 hour day (which is nonetheless much less than what I would normally work) after about DAY 16, then dipped and this limited capacity only returned after I was released from hospital around DAY 40. Even then, I often need to take a quick rest in the afternoon to recoup my strength;
- Headaches: twice during the illness, unusual as I rarely get headaches;
- Sputum/phlegm: may seem contradictory given that one of the main symptoms is a dry cough, but I had both, a period at the start and between DAYS 25-35, of dry coughing, but a period in the middle between DAYS 10 and 23 where I was treated for a secondary infection using Amoxicillin (did not work) and Clarithromycin (which did clear up the infection)
- Persistent pain or pressure in the chest: around DAYS 14-21 where nothing beyond shallow breathing was possible. Often woke up in the night feeling shortness of breath. Then unbelievable chest pains (I imagine similar to being stabbed repeatedly with a knife in the chest, an experience that fortunately I have not endured), between days 30 and 40, which in hindsight was due to the pulmonary embolism, the symptoms of which the doctors did not diagnose or identify quickly;
- Muscle aches and pain: WEEKS 2-4, ongoing. Initially caused by coughing, but then pain in upper and lower left arms, shoulder, right gluteus maximus, lower back, and both legs. Treated with anti-inflammatory cream that offered limited relief. Around day 30, a dramatic increase in pain in my left chest and abdomen, that later everyone concluded was related to the pulmonary embolism but which at the time was attributed to Covid-19;
- Bluish lips or face: noticed twice by my children, at the time we thought I was simply cold;
- Diarrhoea: WEEK 2, two incidents, bowel movement took about one week to return to normal;
- Loss of smell and taste: did not experience, although did experience a significant loss of appetite during DAYS 3-17 approximately
Some general considerations
Coronavirus or Covid-19 has changed the world. And it has changed some of us. But has it changed everyone?
I saw a post on Facebook the other day which made me so angry. Someone in a home spa, with a glass of wine. The lack of sensitivity of that post, the ultimate egotism, was staggering. Knowing that the majority of people live in apartments without access to outside space and there are families whose children have not been able to leave a small enclosed space for months, and parents have nowhere to look but at the façade of another building, how could the person be so insensitive? And knowing that some people would be facing terrible situations, from serious health to death, some unable to mourn the passing of a family member, how could the person be so callous? Now is the time to celebrate these positive things in our lives in a serene fashion, and to give thanks for health and livelihood, not to show up others who might be facing challenges. And the post reminded me of the real estate agent who was bragging online about still closing dozens of deals despite the crisis, while thousands of tourist businesses were folding. And the developer who continued, unashamedly, to promote his projects and developments under the guise that it was an “economic responsibility” to keep the country going, i.e. to break the law and market while others respected the sensitivity of the moment.
I did not even bother to respond or react to the spa post, because I fully understand that it is impossible for anyone who is not affected by a health problem to know what it is like to live with one. Why worry if there is no reason to worry? Why be concerned if there is no cause for it? Life is to be lived, and fortunately the majority of people will be unaffected by this virus.
But let no one be in doubt, Covid-19, or Coronavirus, has not only highlighted divisions between social classes and the way they access treatment, between races and the way that their survival ratios are higher or lower, between countries in the way their citizens are more or less accepting of rules, but also underscored the huge division between those people and families who are healthy and those who have to live and deal with serious health issues.
Perhaps Covid-19 will be the catalyst for a greater understanding of the role of carers, both formal and informal. Perhaps Coronavirus will encourage cross-border collaboration on vaccine development and R&D (although, sadly, I see no such indication based on news reporting to date). And hopefully this recounting of an absolutely turbulent two months fighting Covid will help others look out for the right symptoms and force their medical professionals to act swiftly in accordance with the symptoms.
The author hopes readers stay safe and wishes those affected by Covid a full recovery.