Brian Tumwebaze was born and raised in Fort Portal District. In 2009, he started working with Uganda Funeral Services as pallbearer and rose through the ranks until he attained the position of field supervisor in 2015.
That year in June, he got a job as a monitoring assistant at ABC Imaging in the United Arab Emirates.
Last year, July 25 started out like any normal work day until he developed a cough.
“When I started coughing, within a few minutes I had chest pain and could not breathe,’ he says. Tumwebaze was rushed to the nearest hospital unconscious. The next day he regained consciousness and recalls one of the doctors telling him that he needed to be transferred to the Iranian Hospital immediately.
Tests were carried out and it was discovered that he was suffering from cardiac rupture of the sinas of the vasalva.
“I did not understand what this meant so one of the cardiologists explained that I was suffering from a tear between the heart and the aorta with a tumor inside the heart,” he shares. Tumwebaze says the doctors told him his heart was functioning at only 20 per cent.
“Because of this, everything would make me tired. I could only lie in bed. Even talking made me tired. The doctors told me that mine was a rare case”, he says. Tumwebaze was told he had to undergo open heart surgery. As if the news of his fatal heart condition wasn’t bad enough, he received the news of his termination from work while laying on that hospital bed.
Pathius Mugisha, Brian’s best friend and workmate was by his bedside through the tough times.
“Brian is a very friendly person and even when he was in pain, he still smiled. He smiled at his visitors, caretakers, doctors, nurses and other patients which encouraged most of us as we were taking care of him”, he says.
Making the decision
“I came to terms with it and decided to undergo open heart surgery,” Tumwebaze says.
After a month and two weeks, he was scheduled to undergo surgery.
“I called and informed my family in Uganda about my condition. They were filled with so many questions considering that I had not been home in three years.
Luckily, he had an aunt who lived in a city close to the hospital. She went to the hospital to check on him and kept his family updated.
It was a team of seven doctors and the surgery that was meant to take eight hours lasted 16 hours.
Everything was going on well until his heart stopped completely. It was swollen, outside the chest and chest was still open. At this point, the doctors were not sure whether he was dead or alive.
“I was unconscious for three days and when I regained consciousness, I was in a lot of pain. I was cautioned not to do anything because any slight movement could cost me my life,” he adds. Tumwebaze was told his heart was functioning slowly like a baby’s and that a pacemaker to help it function had been inserted.
Living on a pace maker
Dr Peter Lwabi, a cardiologist at Mulago Heart Institute describes a pacemaker as a small battery that is placed in the left side of the chest to help control one’s heartbeat. He explains that a pacemaker has two components; a generator/ battery and leads (wires) that help adjust the heart rate. The pacemaker basically commands the heart to help it pump blood.
“The pacemaker generator runs for eight to 10 years and has to be replaced after that. One can get a pacemaker when they get a heart block and the heart muscle cannot respond thus the artificial battery”, the doctor says.
The cost of health
Tumwebaze recovered consciousness, only to be faced with a the huge medical bill.
“My total bill for the three months that I was in hospital was Shs300 million; which my family could not afford. Thankfully, the bill was cleared by the hospital staff, my doctors and good Samaritans,” he shares.
Leaving the hospital
Tumwebaze was discharged in September 2018 weighing 30kilogrammes. A week later, he suffered food poisoning and was rushed to the hospital. The pace maker battery also needed programming.
“I received treatment and it is at this moment that the doctors advised that I return home to Uganda so that I could receive all the homecare that I needed. I decided to return home because I had no money and my employer had not paid me or even given me any benefits”.
In October 2018, he arrived at Entebbe Airport and was immediately rushed to Entebbe Hospital because he was weak and required immediate attention.
Violet Kabacaki, Tumwebze’ cousin was there to pick him up at the airport.
“When he returned from Dubai I picked him up from the airport. I was overwhelmed by what I saw. He had lost weight, was unable to walk, was coughing and he couldn’t breathe well. We rushed him to Entebbe Hospital where he was put on oxygen and advised to take him to the heart institute at Mulago Hospital.”
Tumwebaze then went to Kampala and stayed there for a while because he was required to visit Mulago Heart Institute twice or thrice a week and then go to Nairobi for programming.
Dr Lwabi, notes that Tumwebaze’s pacemaker is not a common type in Uganda thus the need for programming in Nairobi.
Coping while at home
Life has not been easy for Tumwebaze since he returned home. He is still unemployed and yet the bills keep piling.
“I do not wear closed shoes because there is a lot of heat in my feet. Some people at home think my condition is as a result of witchcraft. I have seen most of friends walk away because they feel my situation is draining them. I cannot get too emotional as a change in my emotions can lead to a heart attack. Last month alone I suffered four heart attacks in less than two weeks”, he shares.
Every time he visits a cardiologist, Tumwebaze needs more than Shs3million, drugs for a month cost Shs1million and monthly visits to Nairobi for programming cost Shs2million or more.
Despite all this, Tumwebaze is grateful for a second chance at life.
“I would like people to look at me as an instrument of hope and nothing less,” he says cheerily.
About the disease
A sinus of Valsalva aneurysm is a rare cardiac anomaly that may be congenital or acquired; a coexisting cardiac lesion might be present. If the aneurysm ruptures, it causes acute symptoms of dyspnoea. Echocardiography and cardiac magnetic resonance imaging are useful for diagnosis. The treatment of choice is surgery. Uncorrected, the rupture almost invariably causes deterioration in heart function.