Kidney disease almost killed me due to treatment delay - survivor

In 2016, Muthoni had just travelled back from a business trip in Uganda when she noticed that her feet had swollen and she developed a persistent headache.

A medical check-up showed that her blood pressure was high and she was put on drugs to manage it. This was not a big deal for her.

Muthoni had lived with hypertension for a decade and drugs always made her better when it flared. This time, however, it was not the same.

The symptoms only got worse and one day she woke up and could not see. Her sister rushed her back to the hospital where medics sent her for more tests.

That was the day her life changed forever.

The tests indicated she had Stage 5 kidney disease. Muthoni presented the results to the physician who had treated her for as long as she had had hypertension.

The doctor sent her for an ultra sound test. It confirmed the diagnosis. The doctor referred the patient to Kenyatta National Hospital.

“I had never thought about kidney failure before. I never even knew anybody who suffered from it. My family and I did not know what to do or where to start,” Muthoni said.

“At KNH, more tests were done and the doctor told me, ‘The tests show you are sick, Grace’. He told my family to go home because I needed to be admitted immediately”.

The doctor explained that said she’d be immediately put on a catheter and dialysis done soonest possible, instructing her family to debate on who would donate a kidney to her.

They stared at him in shock as they had all thought the visit was just a normal medical check-up and had hoped the earlier tests were wrong.

Muthoni told the doctor that she needed time to go home and 'sleep on it’ but he was adamant that she needed to start treatment.

He even took the time to call her family aside and explain to them that she was not as healthy on the inside as she looked on the outside and explained the consequences of not starting treatment early.

But Muthoni stubbornly left, believing that her faith in God would make her better in a non-surgical way.

“I did not know how I’d get better, I just knew I would. That’s the trouble with us believers. You want God to work the way you want Him to,” she said with a chuckle.

Just a few days later, Muthoni fell terribly ill and now required a wheelchair to move around. The disease was overwhelming her body.

Failure to get treatment caused Uremia, a buildup of toxins in her blood as her kidneys were no longer able to filter toxins out through urine. Thi  is often a sign of end-stage kidney disease.

The mother of two was rushed to Murang’a Level 5 hospital where medics convinced her to start dialysis and immediately booked her a bed at the renal unit started by former Governor Mwangi wa Iria in 2015.

With the many cases of kidney failure in the region, it took the intervention of the medics and some county officials to help her get an immediate slot.

With dialysis, her body grew stronger but the four-hour sessions were too strong, leaving her feeling sick and weak.

“I’d see other patients finish their sessions, put on their jackets and go but for me, I’d go home sick and my blood pressure would shoot up,” Muthoni said.

After six months, the temporary catheter started infecting her body and she was referred back to KNH for a permanent one to be inserted.

“We found the same doctor we had found earlier and he asked my family why they had not sought a kidney for me and we all looked at him like he must know that it can’t be bought from a shop”.

The catheter itself cost Sh200,000.

The sickness sunk Muthoni deeper in her faith but she was still not ready to consider a surgery.

Friends who would normally pass by subsided and at some point, she was hit with the realisation that she was facing death.

Her church friends and clergymen encouraged her to explore the transplant option and helped organise a harambee to raise the Sh4 million needed for the surgery.

“I still did not know where to get a donor. I never asked anybody to donate one. I’d not even know how to ask but the fundraiser jolted my family to debate the issue seriously,” she said.

There were four willing donors, two brothers, a friend and a niece and all were viable. They settled on her brother.

The journey was long and grueling and required months of tests and preparations. By then, her skin had noticeably darkened due to the sickness.

Numerous tests indicated she developed kidney disease a decade ago, when she started battling hypertension.

“Had I had the test when I started getting hypertension, my kidneys would possibly have been saved. My advice to anybody who has hypertension or diabetes is to keep having kidney tests so that renal disease is handled early enough”.

Muthoni underwent days of counselling prior to the operation that lasted 13 hours before being put in seclusion for days. Her brother was discharged in a week.

Since then, Muthoni always visits the renal unit in Murang’a hospital to encourage other patients.

“Had I found somebody to guide me through the process, it would not have been as difficult as it was. Donating a kidney to someone does not negatively change your life but it saves somebody else’s”.

Her advice to families with patients with chronic illnesses is to support them whole-heartedly.

She said the cost of drugs after the transplant is too high and discourages some patients from undergoing the surgery.

“I require drugs worth Sh40,000 each month and I have to struggle to get them yet NHIF would pay Sh80,000 for my dialysis. I don’t know what logic the government uses to abandon us when we get better. Many families are struggling financially with renal diseases”.