Activist pushes on after surgery

 

Before a rare disorder, compounded by misdiagnosis, gradually stole Martin Njuguna’s ability to walk from late 2018, he was an entrepreneur and an activist who took part in numerous protests in Nairobi.

One of the most notable protests Njuguna took part in was in 2013 when he and other activists burnt 221 coffins outside Parliament. The group was protesting the decision by lawmakers to increase their salaries.

Months later, Njuguna and other protesters released pigs outside Parliament, letting a sow and its young ones lick blood poured on the tarmac.

“I can’t count the protests I’ve been involved in. Anywhere you’ve seen Boniface Mwangi, I was around,” he says.

“We work a lot with Boniface. We are the people behind the scenes in most of the protests he leads. We are the guys pulling the strings and the logistics.”

Njuguna uses “we” to refer to himself and Irene Kui, his wife of 21 years.

“We have been teargassed,” Njuguna says, adding that he has also helped organise photo exhibitions around the country.

But it will take a while before Njuguna returns to the streets.

He cannot stand up without a prop because of a disorder that weakened his legs. He has even undergone surgery.

On the flipside, the disorder has offered Njuguna an opportunity to compare Kenya’s health system with India’s. He finds ours wanting. 

Four times during the interview, the phrase “it is a joke” cropped up as he discussed the country’s health system.

Njuguna’s main activity is a business he runs with his wife, with whom he has two sons aged 20 and 14.

“We are event organisers. We do a lot of social marketing and our clients are mostly non-governmental organisations,” Njuguna said.

The Sunday Nation spoke to Njuguna and his wife at their home in Tigoni, Kiambu county, on Wednesday morning. 

Njuguna was officially registered on Tuesday as a disabled person with the National Council for Persons with Disabilities “after a lengthy process”.

He cannot tell his story without emphasising the need for a patient to seek a second opinion whenever a doctor recommends a certain life-changing procedure.

“There is nothing wrong with seeking that kind of opinion,” he says.

“Had I not gone to India to get another expert’s opinion, I probably would be dead. If I remained here and allowed doctors (at one hospital in Nairobi) to remove a suspected tumour, what would have happened?” he asked.

The signs started when Njuguna was taking part in 21-kilometre Lewa Marathon on June 30, 2018. 

It was the first of many marathons the couple would run in East Africa.

After Njuguna crossed the 15-kilometre mark, his right leg became weak, though he recovered days later. 

The problem, however, kept recurring. After the end-year festivities, Njuguna and Kui decided to seek a medical expert’s opinion. 

That is when the long journey of consultations began.

The first doctor said the problem was due to a slip of a disc in the backbone.

The second said there was no slipped disc; that the only noticeable thing was a swelling near the spinal cord.

“Since there were two medical opinions, we needed a third,” he said.

The third doctor agreed with the second one. Njuguna was then referred to a neurologist.

The fourth doctor, a neurologist, said the problem might have been caused by trauma, infection or a tumour. 

He ruled out the first two but to test for a tumour, Njuguna’s back had to be opened up surgically to remove flesh from the swollen part.

The procedure involved removing some bones in his spine to reach the target area. 

Njuguna knew the risks and rejected the surgery option.

“Since someone advised us to go to India, we reasoned that the problem appeared too big for Kenya,” he recalled.

That is why Njuguna flew to India, where tests done at Fortis Hospital finally uncovered the truth. It was not cancer.

“Their magnetic resonance imaging (MRI) machines are very powerful. They make ours look like a joke,” he said.

Njuguna had spinal dural arteriovenous fistula. This is a rare condition in which an artery, which takes blood from the heart, flows directly into a vein. 

Veins normally take blood to the heart. They have thinner walls than arteries. 

Due to pressure mismatch, a vein swelled, pressing the spinal cord and constraining nerves.

“It could have happened anywhere along the spine and affected any part of my body. In this case, it affected my lower limbs,” Njuguna said.

He underwent a seven-hour surgery on June 13, 2019. It involved cutting and sealing the vessels that were running into each other. 

The surgery was by the use of delicately operated microscopic equipment.

Months after the operation, the side of his face that had started degenerating began healing. 

Before the surgery, one of Njuguna’s eye had become smaller than the other while one side of his mouth was sagging.

His legs also began improving. Through therapy, motion is returning to his feet. Njuguna can now move his toes but still has a long way to recovery.

“I can’t stand by myself and have to lean on something. Once up, I cannot take a step without holding on to something. That is limiting in many ways,” he said. 

At the time of the surgery, Njuguna was confined to a wheelchair. He says the first thing he will do once he gets back to his feet is ride a bicycle. 

Njuguna says his faith has seen him through.

“I strongly believe in God. He cannot give me more than I can handle,” he said. 

Despite his medical condition, Njuguna is still running the business, and is always on phone or laptop.

“He worked till minutes to the surgery. Had it not been for the anaesthesia, he would have continued working ,” Kui said.

As Njuguna recovers, he has a lot to say to the government as far as healthcare is concerned.

“The Ministry of Health is synonymous with scandals. The medical equipment leasing is a joke. The government bought equipment that half our hospitals cannot even use. We need to come together as citizens and demand more from the government,” Njuguna said. 

“I was lucky because I could go to India. Tens of thousands of people do not have that option. If you can, please get insurance for it will be of great help in critical times.”    BY DAILY NATION