The cause for Colleen’s blood clot is not clear, but as she reflects, like many things, good health is never fully appreciated until it disappears.
It was mid November 2017. I had just concluded the follow-up with my gynecologist to discuss the results from the hycosy scan, which showed that my woman parts looked normal and therefore my sporadic periods were likely due to hormonal imbalances for one reason or another. We decided to try birth control to, in essence, restart my system. I had been on the same form of birth control for two years when my husband and I were first married and I moved to the UK, and never experienced any complications or anything to indicate potential problems. So therefore, it seemed reasonable to try this approach. My husband and I had been trying for our second child for several years now, but unless the reason behind the sporadic periods was sorted, this goal would only be a pipe dream. Plus, it would also provide a very much appreciated break from constantly having to run to the toilet due to Aunt Flo showing up unexpected again.
I noticed that my right leg was slightly larger than my left. It didn’t look red or feel warm to the touch, just extremely painful, so again I attributed this to my injury
Fast-forward a few weeks. I was climbing in through the boot of the car since all the other four doors of the car were frozen shut. Our cat had his monthly fat club appointment at the vets, and I was keen not to miss it. Besides, I’m quite an active person, and thought to myself, “how hard could this be?” As I was climbing over into the driver’s seat, I could feel myself tweaking my right leg. The pain quickly subsided, and I thought nothing more of it. A few days later I felt a throbbing pain in my lower right side of my back. My husband, who suffers with lower back pain, gave me a massage and I took a few painkillers before bed. The pain gradually proceeded down my right leg over the next few days and I concluded it must have been due to pulling a muscle while climbing over the car seats. I called the GP, who advised it would be best to rest, and to follow up in person should the pain not subside. On the 22nd of December, I noticed that my right leg was slightly larger than my left. It didn’t look red or feel warm to the touch, just extremely painful, so again I attributed this to my injury. Besides, being that it was the Christmas holidays, seeing a GP would be next to impossible. The on Christmas Eve my groin was swollen and my right leg was red and warm to the touch. I called 111, and the man on the other side of the phone advised me to get to A&E as soon as possible.
At A&E I was fortunately seen very quickly. The triage nurse looked at my leg and groin, and a d-dimer blood test, which can determine if clots are present or not, was ordered. The results came back quickly, and indicated that yes, there was a clot. I was then transferred to Ambulatory Care to determine the next course of action.
By this time, my husband had notified my parents in the States. Some people may call it luck or fate, but my sister and her husband were with my parents at the time. My brother-in-law is an ER doctor, and runs the emergency room at one of the large hospitals in Los Angeles. He was curious as to my symptoms, and we held a video call while I was waiting in Ambulatory Care. He went over the tests that had been done, and said his main concern was that there was swelling in the groin area, which indicates more than just a DVT in the leg. He advised that the best course of action would be to immediately order a CT scan of the legs and the pelvis.
Based on the symptoms and especially the swollen groin – WHY was the scan being delayed for almost a week?
During this conversation, the consultant on duty arrived and advised that I would be given an injection of Dalteparin and sent home, with no further action required until the following week, when they would do a scan of my leg. As my brother-in-law was still on the phone, he asked to speak with her, and questioned why - based on the symptoms and especially the swollen groin – WHY was the scan being delayed for almost a week? The consultant’s reply was “it’s our policy.” I was discharged and sent home.
Of course, when I got home that night, my parents, along with my sister and brother-in-law, called. They were all very concerned and urged me to return to A&E in the morning. I agreed, and hung up. I wrapped a few last minute gifts to put under the tree and went to bed, wondering if I had made the right decision to leave the hospital.
The night before Christmas doesn’t offer much sleep for several reasons, one being the excitement that awakens children in the early hours of the morning. I wish this had been the only reason. But it was lovely being able to watch my daughter’s smile that morning and to enjoy homemade cinnamon rolls before heading back to A&E.
I was much more adamant about my care, having now a better understanding of what was going on. The consultant I saw on Christmas morning was much more attuned with the need to perform a CT scan, and I was wheeled in on a trolley, not knowing what to expect. The attendants were very helpful, and informed me I had to stay as still as possible during the scan. For those having had CT scans before, you will know that this can be difficult sometimes, as the pain one may experience when the dye is pushed into your veins can be excruciating based on the flow rate.
Fortunately the pain was minimal, and I was soon wheeled back to Ambulatory Care to wait for the results. Eventually the consultant returned with the news. It was an extensive clot, much worse than what had been anticipated.
A vascular consultant was asked to come to the hospital to analyze the scan results. There was extensive thrombosis involving the right common, superficial femoral vein. There was more thrombus in the right common and external iliac vein as well as the left external iliac vein. This thrombus also extended into the IVC above the L4 vertebral body. The IVC, or Inferior Vena Cave, is the largest vein in the human body and is essentially the main highway bringing de-oxygenated blood back to the heart.
When the vascular consultant arrived, he transferred me to another ward and placed me on a heparin drip. However, the most surprising news was that he needed to transfer me immediately to another hospital in London, one that had a bed available in the HDU, or High Dependency Unit. My daughter still comments today that she will never forget the Christmas when mummy had to take an ambulance to London. I most certainly will never forget it either.
I recall the doctors telling themselves they had never seen something like this before, and to ask the Senior Consultant to come and have a look
I was transferred to London and waited two days before the best team was in place to perform another scan and start Thrombolysis. This had been deemed the best course of action. Thrombolysis is a procedure by which clot-busting drugs are delivered by a catheter to the blockage site to break up extensive clots. There are many risks involved, hence why a bed in HDU was required. What I remember most from the procedure is the feeling of tubes being inserted into my legs from behind my knees. I also remember lying on my stomach for what seemed like eternity, as it had been discovered that the clot in my IVC was in fact a chronic blockage. Think of a rubber ball. I recall the doctors telling themselves they had never seen something like this before, and to ask the Senior Consultant to come and have a look. What it was that surprised them I am not entirely sure, but the thrombolysis was used instead to clear the other clots, while options for unblocking the IVC were to be discussed afterwards.
After two days the main clots had cleared and I was transferred to another ward to begin the recovery process. I was placed on Rivaroxaban, an anticoagulant that is usually the first go-to drug for patients with clots. I was eager to get up and move about, knowing that mobility is an important factor in preventing clots while in hospital. Mobility, and staying hydrated. However, on the 31st of December my right leg started to hurt again, and I noticed that my right thigh was larger than my left.
On the 3rd of January 2018, a scan was done on my right leg, which showed that the clot had redeveloped. Thrombolysis was started again on the 7th
of January. During this procedure, stents were inserted in the IVC to clear the chronic blockage. A total of 9 were used. Stents are like a metal mesh that is used to open up veins or arteries to increased blood flow. Many people have them and they are in a way, lifesavers. The thought behind inserting the stents was that clearing the chronic blockage would mean better blood flow, and therefore it would make it less likely for clots to redevelop.
Thrombolysis was stopped on the 12th of January. Unfortunately, this round of thrombolysis using clot-busting drugs had not cleared the entire clot. Another form of thrombolysis, called mechanical thrombectomy, was used on the 13th. This procedure involves basically hoovering out the clot with ultrasound, rotating device or high-speed fluid jet.
Yet, on the 15th of January, a scan revealed more clots. Perhaps my blood flow was still to slow. Also, since stents are foreign bodies, it is easier for the blood to stick to them and therefore form clots.
On the 16th of January, there was one more push of mechanical thrombectomy, and an AV fistula was fitted in my right groin. An AV, or Arteriovenous, fistula is a connection between an artery and a vein. The belief was that the AV fistula would create a high enough blood flow rate to make clotting difficult through the stents in the IVC, and therefore keeping the remaining veins clear.
I had been in hospital almost a month, and the final scan a few days later showed no evidence of clotting. I cannot explain the ecstatic feeling I had at the prospect of returning home finally. I had missed Christmas and my daughter’s 6th birthday, and I was adamant I was not going to miss anything else.
Of course, you never know what life is going to throw at you. Valentine’s day, Mother’s day and Easter were spent in hospital. Being a woman on serious amounts of various anticoagulants, there is an increased risk of some side effects, including increased monthly bleedings. Unfortunately in my case I was losing so much blood that several transfusions on each occasion were required. After some degree of trial and error with various hormonal options, and careful balancing given the potential risk of developing clots, this bleeding is now under control.
The main question of course is what caused the clot in the first place? While birth control is certainly a risk factor when it comes to DVT, why is it that I never experienced any leg swelling or pain when I was on it for two years when I was first married? One would think had birth control been the main culprit, a blood clot would have formed during this time as well.
I wonder if the injury sustained while climbing over the car seats contributed to the formation of the clots. Perhaps tweaking a vein. We had also gone on a car journey, and were stuck in traffic on the M25. The 2 ½ hour car trip turned into 4 ½ hours, and being stuck on the motorway makes it very difficult to get up and get moving.
I have been told that this chronic blockage could have also been considered a lifesaver, as it prevented the other clots from travelling to other parts of the body – the heart, head and lungs. It’s funny how things work out.
The other question is what was the chronic blockage, and when did this form? The chronic blockage was most likely a clot that somehow lodged itself in the IVC, and my body just adapted to form veins around it to get blood to the heart, hence why it wasn’t detected. One possibility is that this clot may have formed during pregnancy or post delivery. I have been told that pregnancy is like “birth control on steroids.” There is an increase in blood clots at this time, and I remember discussing with the health visitor how one leg was be bigger than the other a week after my daughter was born. I was given Dalteparin injections for 5 days as a precaution, and the swelling eventually went down and pain subsided, but there were no scans or tests done. Therefore, we can’t be certain if this was a clot or indeed if this was the start to the chronic blockage. Unfortunately we will never know. However, I have been told that this chronic blockage could have also been considered a lifesaver, as it prevented the other clots from travelling to other parts of the body – the heart, head and lungs. It’s funny how things work out.
Could this extensive clot have been the outcome of the perfect storm? Several blood tests were done to determine if there was a genetic reason like Lupus or Factor V that made me more susceptible to clots, but the tests results were negative. Perhaps the chronic blockage slowed the blood, the birth control made it sticky, and the immobility from the car journey or the tweaking of a vein made it clot. If one item had been missing, I might have never known about the risk of clots, aside from DVTs and PEs due to long flights.
For now I am just adapting to a new life. The doctors are moving me onto warfarin so I no longer have to take Tinzaparin, a low molecular weight heparin injection, which I have been taking twice daily for over a year. That has come with its own side effects, including causing a hematoma the size of a watermelon in my abdomen. Fortunately I still have my maternity clothes, which I never thought I would have the opportunity to use again. Granted, I do get funny looks, as the “baby” is quite lopsided. But is gradually getting smaller with time.
As for the clots, I still have that worry in the back of my mind and probably always will. Over time this will dissipate, but in the interim hopefully this story will help others. There is not much chat about clots, but being aware of the symptoms can save lives.