Five years ago, Denis Nsimbi suffered from unrelenting fatigue and backache. His condition deteriorated as doctors diagnosed him with one illness after the other until the formerly healthy bodybuilder became gravely ill.
Due to lack of proper diagnosis, his body shrank; all his bones are weak and brittle, and he attempts a few footsteps on crutches. Nsimbi shared his story full of anguish amidst hefty hospital bills with YUDAYA NANGONZI.
On this cold December morning at 9:40am, I find Denis Nsimbi lying in pain on his bed. Dressed in shorts in this one-roomed house, he struggles to sit upright to welcome a visitor – exposing his swollen hairy chest and feet. My arrival is just in time for his next dose of 10 tablets waiting on a plastic chair.
He asks for some minutes to swallow the medicine but on an empty stomach.
"I tried to eat some things but I am constantly throwing up yet I have to take my medicine. On a daily basis at 6am, I swallow 12 tablets and then 10 tablets at 10am. At about 3pm, I take another 10 and more 10 at 8pm before ending the day with another 10 tablets at 11pm," Nsimbi says as he opens a mineral water bottle with hibiscus juice to take his medicine.
"Whenever I tell friends and relatives on phone that I swallow at least 50 tablets daily, some hardly believe me. I thank God that you have come at the right time to witness the pain I go through. It is a tough one."
I help him return the remaining drugs in the cupboard but the drawers are full of drugs as if he runs a mini-pharmacy at home. Nsimbi has endured this routine for some time after doctors at various hospitals failed to reach a consensus on his ailment.
Sadly, most of the tablets are a mixture of strong painkillers and antibiotics to manage pain, not to heal. They include Tramadol, Eso-mega, Ferrolic, Diclofenac, Levofloxacin, and Agotram. He can't even miss these drugs by hours because excruciating pain sets in immediately in the bones, joints and the entire body.
HOW IT ALL STARTED
Nsimbi was in a gym five years ago when a minor back pain hit him. As a bodybuilder then, he was about 6ft tall and weighed about 97kg.
"I was always in the gym during daytime and worked as a bouncer at several clubs at night. So, the pain would occasionally come in the morning and by 1pm it would be gone," says the 31-year-old father of three who has since shrunk to 4ft and weighs about 37kg.
His body, which he had strengthened into a power-lifting machine, suddenly started failing him in frightening ways. He started with taking Diclofenac tablets to get some relief but the minor back pain resulted into more pain around his chest and spine. In an effort to safeguard his health and bodybuilding career, Nsimbi decided to visit a doctor who owns a private clinic at Mulago in 2016.
The doctor's findings were not comforting, leaving him puzzled.
"They scanned the body and did several tests but failed to diagnose the problem. The doctor only hinted that something is eating up my bones. This doctor recommended me to another doctor at Case Clinic to study my scans," he recalls.
Meanwhile, Nsimbi's initial hopefulness about his scenario continued to fade when he was asked to cough extra monies to investigate his health. At the private clinic, he had spent about Shs 300,000 while the doctor at Case asked to repeat the scans and other tests at Shs 1m.
This amount didn't include the consultation fee of Shs 100,000.
"Sincerely, I didn't have the money to repeat the scans. So, I left and never went back. The 'disease' continued to grow…I started losing height, slowly by end of 2016. I was in a lot of pain and my legs could no longer stand straight."
By mid-2017, his situation worsened. It was now visible to everyone that he has lost height. Devastated and isolated, Nsimbi decided to cut off communication from his gym counterparts and bouncers.
NEW INVESTIGATIONS
It is in 2018 and 2019 that things got out of hand. He became very short and eventually crippled, bedridden. His family pooled some resources and checked him at the Mulago hospital orthopaedic ward where doctors found that his bones had been decimated in an abnormal way.
They likened his condition to how germs eat up a tooth to the extent of it falling out. But doctors couldn't explain the cause, thus referring him to the Uganda Cancer Institute (UCI) for further management. Nsimbi was admitted at UCI for some time but doctors did not reach on a conclusive diagnosis.
"Doctors would say my situation is inexplicable. They would speak around my hospital bed during ward rounds that in medical school, they never learnt that a person can grow short," he says.
"I showed them photos of my former self and they were all shocked. They reasoned that a person can, maybe, get fractures in their bones but not lose height. So, they sent my scans to Aga Khan hospital in Nairobi but the doctors there also said that they had never encountered such a case."
In Nairobi, however, doctors requested that if possible, Nsimbi be flown out of the country and they monitor him physically. This new journey required a minimum of Shs 30m. Instead, his family gave up on this second option to investigate his ailing health after being told that his entire body was disfigured.
But no one could explain the cause. The only help they could offer at Mulago was to manage the resultant complications of his situation such as anaemia, fever, general body weakness, low appetite and acute ulcers, among others. His bones were constantly found with small holes and could not manufacture blood cells.
On his referral to Kiruddu hospital for continuous management, Nsimbi was also reminded that he would walk on crutches because the weakened bones could not rebuild due to the effects of the 'virus' eating him up.
LIFE MEANINGLESS
Looking at his three children aged twelve, six and three yet to be orphaned, Nsimbi says he could not help but shed tears at Kiruddu hospital. He was always on drips as the body could not support itself anymore. Thrice, he attempted to commit suicide until he was discharged from Kiruddu in July this year.
"My wife was supportive but being there without knowing what exactly is the problem is the worst. It is easier to be an HIV, sickle cell or diabetic patient on proper medication. For me, I didn't know and even the doctors are not helping yet I am in pain all the time."
After more than four years without posting a single picture on Facebook, he decided to give it a try hoping to get some sympathy from his friends and followers.
"On my first hospital photos in a sorry state, people started abusing me. They said I was a fraudster trying to con people. They called it a photoshop. You know it was unbelievable that I could look that way. So, it took time to convince people that actually it was true," he says.
He adds that social media also came with many insensitive comments. I reiterate by asking Nsimbi whether he once used steroids during his body building career.
"I swear upon the living God that I never used steroids throughout my time at the gym. I was naturally a tall man with a wide chest. Even the doctors told me this condition had nothing to do with my bodybuilding regime because it would have been detected early."
At the time of the interview, Nsimbi had just returned from Kisubi hospital where he was rushed in critical condition. Whenever a severe attack comes, he usually feels cold, weak, and the feet get swollen. His blood level had dropped to 4gm/dL [normal range is 11.0 to 16.0] but the hospital managed to raise it to at least 7gm/dL.
Despite the fact that he takes many drugs, Nsimbi is still lucky that recent tests show that his most crucial internal organs such as the kidneys are still intact.
FAMILY, WELL-WISHERS 'MAKE ME FEEL BETTER'
Until his condition, Nsimbi had been used to dealing with own hardships. By the time he was discharged from Kiruddu, he rented along Busabala road off Entebbe road but was behind on rent by almost a year.
It took the intervention of well-wishers online that collected money and paid up his rent arrears as well as support his family with foodstuffs during the total lockdown period.
In this fundraiser, a one Nalongo Namusisi unknown to him also offered his family free accommodation and electricity at her premises in Garuga off Entebbe road. Asked if this is a permanent offer, Nsimbi says that Namusisi generously gave an offer without a time frame.
"I got this offer of two separate single rooms for my family but I need to have an exit plan. Initially, I had some plots of land but sold them off and most household items to cater for my hospital bills. What I need now is to get a plot of land, build a house for my children and at least die in peace, well knowing that I have left my children with a permanent home. The truth is that I am sick and going to die sooner or later. I have no guarantee. Whenever I go to hospital, I have less hope of coming home alive," says the S3 dropout whose chances of returning to the job market are slim and living off public handouts.
He evokes memories of the 'good old life' as a bouncer that earned him at least Shs 30,000 a night. On a good day, he would get home with an extra Shs 100,000 and bad days Shs 50,000 in tips from clients.
He worked at clubs such as Buddies in Ntinda, Club Rouge, Amnesia, Shooters, 01 bar in Zana, defunct Club Silk, and Nyondo club. Today, it's his wife who is trying to make ends meet with her cosmetics shop in town. He commends her for keeping a jovial face throughout this trying moment.
Nsimbi also finds peace in his children that are also not bothered about his ailment as "they never ask about my situation. They just know that dad is sick, that is all."
As he bids me farewell on his plastic chair fitted with a pillow for comfort, Nsimbi wonders whether he will live the next day.
"Let me hope that by the time my story is published, I am still alive to read it."
nangonzi@observer.ug
Three days after this interview, Nsimbi's relative informed me that he was rushed again to Kisubi hospital with acute anaemia.
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