Clot in my lung almost claimed my life

Agnes Khamisi, a clinical application specialist, was misdiagnosed and almost died of deep vein thrombosis, a blood clot stuck in her legs. PHOTO| COURTESY

When Agnes Khamisi noticed that her legs were swollen, she knew from her background as a critical care nurse that it might be a blood clot.

Knowing that she was a frequent traveller with lots of long-haul flights and immobility (factors that put her at risk), she immediately had a doctor check it out. He dismissed it.

"I told every doctor I saw this could be deep vein thrombosis (a clot in the leg), but none listened to me," she recalls, noting that her suggestions were dismissed as overthinking things based on her experiences in critical care.

She wishes she had sought specialist care earlier, because in the three months she persevered the health complaints, things went from bad to worse.

It began with a swelling of the legs that was initially dismissed by doctors as a consequence of trotting about in high heels. However, a change to more practical shoes did not help. Instead, the symptoms piled on one after another – chest pain that a doctor (mis)diagnosed as pneumonia, then difficulty walking (especially climbing the stairs), and breathlessness at the slightest exhaustion, that saw her collapse in a heap and rushed to hospital.

Initial tests showed her blood sugar was not over the recommended limit, nor was she having a heart attack. However, there was very little oxygen in her blood.

More tests at a bigger hospital were more dismal: One of her lungs was completely blocked, with no flow of blood; the other had only 10 per cent flow of blood and the main artery was blocked too.

There was barely any blood flowing into her lungs. She was having a pulmonary embolism (a blood clot in her lungs). It begins as a clot in the legs, which moves up to the lungs where it becomes fatal.

THROMBOLYSIS

She had one big clot that went all the way down her right leg, with other smaller ones all over her body.

She needed thrombolysis (process of introducing a substance that breaks and disintegrates clots in the body), but in her circles, a thrombolysis prescription is like being handed a death sentence. She survived the two doses.

According to Dr Harun Otieno, an interventional cardiologist and vice chair of the Kenya Society of Thrombosis and Haemostasis, thrombotic-related disorders such as stroke, heart attacks and venous thromboembolism (VTE) are on the rise in Kenya, and when patients die suddenly, they likely died from a thrombotic disorder.

Many of these deaths can be prevented, but they are often misdiagnosed.

"Pulmonary embolism is fatal is because it is often misdiagnosed. When someone comes in with a cough, chest pain, sudden difficulty breathing, or sudden fainting, it could be anything: an infection, heart problem or something else. People are treated for these other non-life-threatening conditions, when they could be having pulmonary embolism."

The risk factors for developing a clot are hospitalisation, immobility, cancer, orthopaedic (hip or knee) surgery, obesity, pregnancy (due to reduced mobility, and the body's tendency to control bleeding), hormonal contraceptives, and varicose veins. The most common sign is sudden pain and swelling in one leg. An ultrasound of the legs can detect a clot in the deep veins.

As she marked World Thrombosis Day on Saturday, three years after a brush with pulmonary embolism, Mrs Khamisi wished doctors would hear patients out. If doctors had listened to her, the clot could have been caught and dealt with earlier before it became life-threatening.

She survived, but others are not as lucky. She also wishes that every hospital would have a point-of-care ultrasound device, to catch clots early and accurately.

To reduce risks of clotting, she wears thrombolytic stockings, has upped her activity and is keener about what she eats. She also takes aspirin every day to keep her blood thin and reduce chances of another clot by half.