Esther Mwangi: 'One minute I was fine, the next, I had a swollen leg'

When 43-year-old Esther Mwangi started her journey from Nakuru to Nairobi one early morning in 2019, her mind was occupied by her errands once she arrived in the city.

But as the journey came to an end, she felt an overwhelming sensation in her leg that she had never felt before. 

“It was at exactly 6:15am when we had just arrived in Nairobi. It felt like my left leg was heavier than the other. Some of my fellow travelers who noticed my distress pointed out that my leg was swollen,” Esther narrates. 

“They were curious to know what was ailing me. Maybe they were God sent. I told them, I had just noticed the swelling myself. Driven by humanity, they looked for scissors and cut out my trousers and access my leg because within a few minutes, the pain had spread to the rest of my body and I started having breathing difficulties,” she says.

With the help of other good Samaritans, Esther was rushed to a nearby facility.

“Within a few seconds, I was turned into an invalid. This left me dumbfounded. Upon arrival at the health facility, doctors were shocked to see my left swollen leg. It was almost the size of a gumboot. I was rushed for an ultrasound test which confirmed that I had deep vein thrombosis (DVT),” Esther recalls.

Hearing about the condition for the first time, she didn’t know what it was. 

“I was also curious to understand what the cause was,” Esther says. 

According to Dr Kibet Shikuku, a Hemato-Pathologist at The Nairobi West Hospital, DVT is a condition that occurs when an abnormal blood clot (thrombus) forms in one or more of the deep veins in the body, usually in the legs, which causes leg pain or swelling.

“Blood clots may form in veins if the vein is injured, a disorder causes the blood to clot, or something slows the return of blood to the heart,” Dr Shikuku says.

He explains that because the human system is interconnected, DVT and cancer are commonly related conditions.

“Cancer cells can trigger the overproduction of blood clots, making your body prone to DVT. The link between blood clots and a cancer prognosis results from this imbalance. Too much clotting increases the risk of poor circulation or a pulmonary embolism, which is when the blood clots shrink and travel toward the lungs,” Dr Shikuku says.

He adds that women are especially at risk for blood clots during pregnancy, childbirth, and the three months after delivery. 

“During pregnancy, a woman’s blood clots more easily to lessen blood loss during labour and delivery. Pregnant women may also experience less blood flow to the legs later in pregnancy because the blood vessels around the pelvis are pressed upon by the growing baby,” Dr Shikuku expounds.

He adds that certain conditions, inheritance factors, infections like HIV, and abnormality of enzymes can also result in DVT. 

“This disorder can be prevented through, medics’ prescription of medicines such as anticoagulants or blood thinner, and pregnant women should visit medical facilities now and again for follow-up because they are at risk. Physiotherapy for those people who are always immobile is important and wearing compression stockings to improve blood flow in one’s legs is crucial,” Dr Shikuku recommends.

According to the National Blood Clot Alliance (NBCA), a US Non-Profit Organisation, DVTs do not discriminate and they affect people of all ages, races, and genders one of the most important things you can do to prevent blood clots is to know if you are of risk.

“Cancer and cancer treatments, pregnancy which includes the postpartum period, use of hormone replacement therapy containing estrogen, obesity, age of 55 and use of birth control methods are some of the major risk factors,” the NBCA states. 

The organisation lists symptoms of DVT in the leg or arm as swelling, pain/tenderness not caused by injury, skin that is warm to touch and discolouration of the skin. When it goes to a point of reaching the lungs, symptoms include difficulty in breathing, chest pain that worsens with a deep breath or lying down, and coughing faster than a normal or irregular heartbeat, according to the NBCA. 

“Black or African American people have up to 60 per cent higher rates of life-threatening blood clots than white people,” the NBCA adds. 

Following Esther’s diagnosis, medics ruled that she had to be admitted to the facility because the clot had reached her lungs, almost getting route into the heart -- and, according to experts, when the clot is almost in the heart, it’s risky and one can lose his or her precious life within a short period.

“What next after being diagnosed with this clotting condition?’ That was kind of a question that was ringing in my mind now and again. I settled on calling my family to inform them that my day’s activities had unfortunately stopped following a chronic condition that had attacked me. My father didn’t it -- he said that maybe I got an accident and others argued that I was bitten by a poisonous insect but, later on, after confirming the facts, they believed I was sick and I needed help,” she adds.

Esther narrates that she was admitted to the facility for five days.

“Doctors told me that if I took the medicine as prescribed, I would heal from the condition and that within few weeks, my swollen leg would be okay and I could live a normal life,” she says.

Back at home with her family, she took the drugs as prescribed.  

“My first mission was to do research and learn more about the condition. Did it exist in my family? I found out that my aunt who lives in Migori was a survivor of DVT. I started to accept that I had the condition so the new was taking my daily medication and managing life challenges that come especially when you are battling with a chronic condition,” Esther says.

She explains that when some of her friends learned that she had a ‘strange’ condition that had made her leg swell, they shunned her and were even at the forefront, spreading myths and misconceptions regarding DVT.

“They said that I was cursed for stealing someone’s property. Others claimed the disease was linked to witchcraft,” Esther recalls.

“Having this condition will automatically affect you negatively, especially for a person has no one else to help put food on the table. I am single and blessed with two children. Feeding them is not easy. I have to look for ways to pay rent and food while managing the conditions amid other necessities. I tell you it’s a challenge,” she says. 

She adds that the medication she takes to manage the signs that come with the condition costs Sh200 daily. In a week, she spends Sh1,400. 

“I can wake up well and the next few minutes, I am unwell. Sometimes the symptoms disappear but they come back -- the swollen leg with blue discolouration, breathing difficulties and muscle cramps are some of the major signs that are giving me sleepless nights,” Esther narrates. 

“I cannot walk long distances and climbing stairs is so difficult. I also have to abstain from certain things -- taking beverages with caffeine or medication with steroids is a big ‘no’,” she says.

After living with this chronic condition for years now, I got in touch with NBCA which focuses on building awareness and building community among people who are affected by blood clots or at increased risk for blood clots.

“It’s through this organisation I have learned complex facts surrounding it. I have paid back to society by educating them on the condition because it’s one of the top misunderstood diseases,” Esther says.

“In our village, a good number of people have the same condition. To reduce the number of deaths -- because it’s a fact this condition kills -- advocacy for early treatment and checkups is the solution. I’m happy to be one of the certified Thrombasaddors in Kenya and I have used this opportunity to teach a good number of people in our society and outskirts more about the condition,” she adds. 

She says that she has hope that she will recover and live a normal life.

“I have a message to the government in connection with this condition. For the years I have been living with this condition, I can say a good number of medics don’t understand much about it. They confuse it with other blood conditions and so the government should do advocacy and train more doctors on this condition which I can call a ‘neglected one’ despite it being as common as cancer. It is hurting lives and careers,” Esther says.

She says that creating awareness about the condition will reduce misconceptions and stigma in society. 

“We should all understand that blood clots don’t discriminate and affect all ages, races, and genders,” Esther says.