It has now been a week since my diagnosis with bilateral pulmonary embolism and I've started to feel more normal. So naturally, I'm starting to think about running. Or rather not thinking about actually running, but thinking about whether I should be thinking about running. There doesn't seem to be a lot of guidance about when to resume normal activity but a lot of "listen to your body" type talk. Much as I'd like to think that I'm good at listening to my body please consider the evidence:
Exhibit A
I had chest pain, dizziness, and nausea two miles into a gentle jog the day my symptoms started that forced me to sit down on the edge of the path. I had run to the end of a dock from my car and then back past it in the opposite direction so I was now less than a mile from my car. Did I listen to my body and walk back, or did I decide to continue on to make it up to six miles? Guess!
Exhibit B
When chest pain and shortness of breath woke me the following night I went to the local doctor-on-call service and explained my symptoms. When I was prescribed antibiotics and steroids for an infection I knew I didn't have, I still didn't listen to my body and go across the road to the ED and instead sat in traffic on the M50 for 1.5hrs each way and walked around a factory all day most probably with multiple blood clots in my lungs.
Exhibit C
It took five more days of chest pain before I finally went to the ED and even then I felt like I was making it up and wasting someone's time. This is at the exact same time as knowing deep down that something was terribly wrong!
All of the above I submit as evidence that although I once considered myself really good at listening to my body, this is no longer the case. So how then, do I begin to reclaim my fitness without overdoing it?
Two days ago I walked three miles slowly with my daughter. I felt fine during and after it, but then had a terrible night and was convinced I had a new clot.
Yesterday I did nothing, partially to do with having two visitors and partially to do with the fact that it rained cats and dogs all day.
Today I again walked three miles with my daughter. This time I took a break at the halfway point to catch my breath and really pulled back on the uphill when I started to feel some chest discomfort. Is this listening to my body? When does that turn into weakness?
As far as running is concerned, I don't think I will try until the chest pain at rest has resolved and until I get a CT scan of my pelvis and abdomen as I want to know that there isn't anything else lurking in there before I shake everything around too much.
Tomorrow? Four miles walking maybe?
Showing posts with label DOAC. Show all posts
Showing posts with label DOAC. Show all posts
Tuesday, 5 November 2019
Monday, 4 November 2019
VTE, PE, DVT and treatment myths
*Disclaimer: All subjects discussed are from the perspective of my own experience as a healthcare professional, and now as a patient. These are my individual experiences and opinions and not intended as medical advice.
So what is pulmonary embolism (PE)?
A PE occurs when a blood clot or embolism breaks off from somewhere within the veins, travels through one side of the heart, and lodges in the blood vessels of the lungs. These clots can be small and block off a small area of the blood supply, or large and/or numerous, shutting down much of the blood flow. This is a problem as we humans need oxygen to reach every tissue in our bodies in order to survive!
PE is usually as a result of a deep venous thrombosis (DVT) forming somewhere in the veins, usually the legs, but possibly the arms, or somewhere within the abdomen or pelvis. As the flow in the veins is in general from the outermost tips back towards the heart, then a clot breaking off will travel through the right chambers of the heart and into the network of vessels in the lungs where they lodge. The combined disease encompassing PE and DVT is called venous thromboembolism (VTE)
What causes VTE
There are known risk factors for VTE including surgery, trauma, immobilisation, cancer, pregnancy, long-haul flights as well as a genetic predisposition to clotting. The hormone oestrogen can also play a part in some embolic events and hormonal contraceptives or hormone replacement therapy (HRT) can be implicated if no other cause can be found - of note: pregnancy has a far higher risk for VTE than either hormonal contraceptives or HRT.
Current treatment
The current best practice is immediate anticoagulation (blood thinners) in order to prevent further clotting, to maximise flow around the clot and to allow the body to reabsorb the clot over a period of months and years. There are more invasive treatments available to directly dissolve and remove the clot using medication delivered over a catheter, however, this is not generally the first line of treatment and is still largely experimental.
Treatment myths
Unfortunately, during my admission, I was informed by junior doctors on several occasions that the treatment would dissolve my PE. At this point, I was receiving low molecular weight heparin. I am now on a direct oral anticoagulant (DOAC.) While both are effective at preventing more clots, they do not dissolve any but the smallest clots, and this is not a claim made by the drug companies (and believe me they would if they could!)
Clot, whether it is in the legs or the lungs is reabsorbed over time (or not) by the body. Sometimes it resolves fully, other times the body creates channels through the clot preserving some or all function if not form, and yet other times the clot becomes hard and impervious, stable but visible decades later.
By the way, none of the above is a criticism of junior doctors. I don't think they came about their incorrect information off their own bat. They are either not being informed or being given incorrect information.
My healthcare experience
I spent seventeen years in healthcare, working predominantly in imaging of the veins and arteries. Part of my job was imaging DVT, both for initial diagnosis, and then to monitor progress during treatment. This was where it frequently became obvious that patients were being told that their treatment was going to, or already had, dissolved their clot. How shocked they then were when there was still obvious clot in their veins, as expected when they returned for a follow-up scan. So are doctors genuinely unaware of the efficacy of the treatments they are administering or do they think patients just don't want to know?
So what is pulmonary embolism (PE)?
A PE occurs when a blood clot or embolism breaks off from somewhere within the veins, travels through one side of the heart, and lodges in the blood vessels of the lungs. These clots can be small and block off a small area of the blood supply, or large and/or numerous, shutting down much of the blood flow. This is a problem as we humans need oxygen to reach every tissue in our bodies in order to survive!
PE is usually as a result of a deep venous thrombosis (DVT) forming somewhere in the veins, usually the legs, but possibly the arms, or somewhere within the abdomen or pelvis. As the flow in the veins is in general from the outermost tips back towards the heart, then a clot breaking off will travel through the right chambers of the heart and into the network of vessels in the lungs where they lodge. The combined disease encompassing PE and DVT is called venous thromboembolism (VTE)
What causes VTE
There are known risk factors for VTE including surgery, trauma, immobilisation, cancer, pregnancy, long-haul flights as well as a genetic predisposition to clotting. The hormone oestrogen can also play a part in some embolic events and hormonal contraceptives or hormone replacement therapy (HRT) can be implicated if no other cause can be found - of note: pregnancy has a far higher risk for VTE than either hormonal contraceptives or HRT.
Current treatment
The current best practice is immediate anticoagulation (blood thinners) in order to prevent further clotting, to maximise flow around the clot and to allow the body to reabsorb the clot over a period of months and years. There are more invasive treatments available to directly dissolve and remove the clot using medication delivered over a catheter, however, this is not generally the first line of treatment and is still largely experimental.
Treatment myths
Unfortunately, during my admission, I was informed by junior doctors on several occasions that the treatment would dissolve my PE. At this point, I was receiving low molecular weight heparin. I am now on a direct oral anticoagulant (DOAC.) While both are effective at preventing more clots, they do not dissolve any but the smallest clots, and this is not a claim made by the drug companies (and believe me they would if they could!)
Clot, whether it is in the legs or the lungs is reabsorbed over time (or not) by the body. Sometimes it resolves fully, other times the body creates channels through the clot preserving some or all function if not form, and yet other times the clot becomes hard and impervious, stable but visible decades later.
By the way, none of the above is a criticism of junior doctors. I don't think they came about their incorrect information off their own bat. They are either not being informed or being given incorrect information.
My healthcare experience
I spent seventeen years in healthcare, working predominantly in imaging of the veins and arteries. Part of my job was imaging DVT, both for initial diagnosis, and then to monitor progress during treatment. This was where it frequently became obvious that patients were being told that their treatment was going to, or already had, dissolved their clot. How shocked they then were when there was still obvious clot in their veins, as expected when they returned for a follow-up scan. So are doctors genuinely unaware of the efficacy of the treatments they are administering or do they think patients just don't want to know?
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