John Obiko, 24, suffers from a nerve disease that has completely transformed his life and left him dependent on his family.
He shared his story with Sunday Magazine during an interview in Lang’ata, Nairobi.
I woke up on the 15th February feeling exhausted. I remember dragging myself through my morning chores as I got ready for work. It was my first job after graduation and I had been there for two months only and I didn’t want to be late. But I didn’t even make it.
The more I walked, the weaker I got. And I had persistent twitching in my left eye. I thought it was some kind of flu and decided to go back home to rest. When I woke up at around 4 pm the fatigue was even worse. And the twitching in my eye persisted. I also had double vision. I called my parents and they suggested that I replace my glasses.
I went to an optician and tests indicated I was okay. The optician referred me for more tests at Aga Khan Hospital.
They said that my symptoms pointed to something serious. By the time we got to Aga Khan, I couldn’t walk. Also, I had developed throat complications and I couldn’t swallow anything, not even my saliva.
I also experienced shortness of breath and started throwing up. Whenever I drank water, it came out through my nose. All this happened in one day and I got so scared, not knowing what was happening to me. Doctors at Aga Khan performed various tests and all were negative.
The following morning, they took some fluid from my spine which they tested and found that I had Guillain-Barre syndrome, a rare disorder in which your body’s immune system attacks your nerves.
Doctors said that my condition was progressing very fast and that I needed to be admitted immediately. My family needed to pay Sh1 million as a deposit before doctors could start the treatment which was to cost Sh2 million.
Fortunately, I already had health insurance and I was able to pay the amount. That same day, I slid into a coma and woke up in ICU two months later. I was on life support since I couldn’t breathe on my own.
I woke up towards the end of April in intense pain. I couldn’t talk or feel any part of my body.
Though my eyes were wide open, I couldn’t see anything. Doctors had to seal my eyes with pieces of cotton to prevent my eyeballs from cracking since they were very dry and artificial tears weren’t helping.
I stayed in the hospital for another two months and doctors performed plasma exchange to clean my blood and put me on other medications to regenerate my nerves. All the while, I was on life support since I couldn’t breathe on my own yet.
My stay at the hospital was proving too expensive and doctors yielded to discharging us in June so that I would be cared for at home. Our hospital bill was high and it was worrying my parents. Since I was still on life support, my parents were advised to turn my room at home into an ICU.
I needed all ICU equipment including a special hospital bed and all the machines I had used in the hospital which were donated by my parents’ friends. Doctors came to inspect my room before I was discharged and said it was okay. I also needed a critical care nurse who was paid Sh5,000 a day.
My parents also enlisted the services of a physiotherapist who was paid Sh3,000 every day. Between June and August, my parents parted with Sh1 million for these services plus medication. From August to date, we have been spending Sh500,000 every month on my home care.
But my health has improved immensely and I had my tracheostomy and my feeding tubes were removed since I can now swallow and breathe on my own. I can also see and move my head. The only thing I am struggling with is my hands. I don’t have grip. I can’t hold anything. I also can’t feel my toes and I have this constant pain all over my body.
Additionally, I suffer from insomnia but sometimes I oversleep. I am also battling severe constipation and urine retention where I feel my bladder full but nothing comes out.
Apart from daily medication, I still have physiotherapy sessions to strengthen my limbs and stimulate my nerves as they regenerate. My biggest prayer is to walk again, go back to work in perfect health and regain my independence.
Well-wishers willing to help Obiko can forward contributions to Paybill 781975.