Cancer survivor still hopeful after four heart operations

Monday August 27 2018

Despite her condition, Kanyonyozi is positive

Despite her condition, Kanyonyozi is positive about life and believes that the health system has not let her down at all. PHOTO by Beatrice Nakibuuka 


She lost count of the number of pricks she has received. She is not even sure about the number of times she has been to hospital yet she has not lost hope in the Ugandan health system because it has sustained her.
Healing from leukemia left her with an enlarged heart that became a chronic problem. Her room is air conditioned and she must take blood thinners for the rest of her life. Despite the problem, Abigail Kanyonyozi (23) is a jovial, cheerful and positive girl who believes she can achieve anything in life.
Her story dates back to October 25, 2003 when she was diagnosed with leukemia. She was eight years and everything was normal until her mother noticed that the plasters in the first aid kit get used up rather quickly.

She would bleed profusely after a minor cut and after some time, then she started developing bruises all over her body. This prompted her mother Linda Mugisha Tumusiime to take her to Kampala Medical Chambers, where the doctor said she had a bleeding problem but was not sure which one it was.
After a bone marrow test at Rubaga Hospital, she was diagnosed with lymphoblastic leukemia which was very aggressive and needed serious, immediate treatment. The family was advised on possible countries where the operation could be done; they zeroed in on South Africa which offered the cheapest treatment of $20,000 (about Shs36m).
Mugisha says, “My child was one of the children that suffered cancer from the high voltage power lines that run above the school she attended at the time. I am thankful that her cancer was diagnosed early enough giving us a chance to seek immediate treatment more so because it was an aggressive type that would destroy body cells quickly.”

Getting treatment
Before going to South Africa, she was first admitted to Uganda Cancer Institute (UCI) to get resuscitation. She was very sick with a high fever and deterioration so she had to get treatment first to enable her to reach South Africa alive.
“On November 4, 2003 we moved to South Africa. While on the plane, she bled profusely but was able to make it there. Unfortunately, the driver we got pretended to know the hospital when we handed him the paper with its name,” Mugisha shares, “He instead drove us around Pretoria and it did not help matters that we also had no bearing of the place. then told the driver to ask at a fuel station for the hospital’s location only to be directed to another hospital”

They were however, directed to Mary Potter Oncology centre in Pretoria despite the fact that they were meant to be in Johannesburg. With her condition deteriorating, they settled here and their doctor flew from Johannesburg to Pretoria.
In hospital, her veins had collapsed from over bleeding and could not receive any intravenous treatment that day but oral painkillers. On the next day, the veins were still weak yet she had to start her treatment. The doctors then inserted a catheter directly to the heart to enable her receive chemotherapy.

Search for money
“At first we thought it was going to be easy, following the estimation of the cost for Abigail’s treatment. Unfortunately, after three weeks I ran out of money because she was in the Intensive Care Unit from the time we arrived at the hospital,” Mugisha shares, “ I had no hope of receiving money from anywhere thus left her in hospital and returned home.” On returning, Mugisha found that Abigail’s father had organised a fundraising drive dubbed ‘Save Abigail’ and family, friends, and strangers contributed to the cause.
“I had left her in the hands of God because she had no caretaker except the nurses at the hospital. I feared she would be removed from the ICU and she asks for me yet I had to look for money,” she adds, “After a week, we had gathered some money to sustain us for a while and returned but the drive continued. Thankfully, the nurses had taken good care of her as I found her playing and was able to sit up.”

The after effects
The treatment, however, affected her so badly that she lost her hair, coughed blood and her skin broke. In April 2004, she was on remission as the cancer cells were invisible but she was still on oral chemotherapy.
Kanyonyozi returned to school right after chemotherapy but faced stigma from her classmates because she was bald and very skinny; no child wanted to associate with her. “I then tried to counsel her classmates so she could study in a more conducive environment. Throughout her primary school life, she kept fainting and continually grew thinner despite eating well,” Mugisha says.
However, she tells of a relapse in her daughter’s situation, “Dr Ssali did an x-ray, he found that the chemotherapy enlarged the left part of her heart leading to a leakage, weakened the left heart muscles that blood would not be pumped to other body parts. They were not receiving enough oxygen thus the fainting.”

Story of hope
“In primary,” Kanyonyozi recalls, “the library became my companion during the sports activities as I could not participate.”
She was then referred to Uganda Heart Institute in June 2004 as an outpatient and the medication given was to strengthen the heart and also make it heal from the enlargement. Two months later, she became very sick with shortness of breath, swollen feet and was diagnosed with cardiomyopathy (disease of the heart muscles) and admitted.
In hospital, her room had to be air conditioned and would only sleep in a propped up position to breathe well. But even when her health was not at its best, she always said she was fine.

Hospital, pricks
“Every time I went to hospital, I would get several pricks that I lost count and got used to the pain. Whenever I would see other patients, I would see myself as better than them because I believed they were in more pain,” she says.
Upon recovery, she started periodic review at the institute and in 2009, the heart failed; the medicines were not effective anymore. The feet also got swollen and the heart could not pump enough blood for the body thus was she referred to India for surgery.
“I had to come back from Thailand where I had gotten a scholarship the previous year as my daughter needed about $ 24,000 (about Shs49.6m) for the operation to replace her damaged valve in India. We had a public fundraising because the money was more than we could raise,” Mugisha says, “Dr Vivek Jawali, a cardiothoracic and vascular surgeon at Fortis Hospital in India said the valve could not be replaced but required a new artificial St Jude heart valve. That meant we needed more money and I am thankful that the colleagues I was studying with also fundraised for her.”
The operation was a success but when they returned to Uganda Heart Institute, Kanyonyozi was still weak and sickly and the heart had not improved, according to Dr Peter Lwabi, a consultant cardiologist at Mulago hospital. She needed a device inserted in the heart to strengthen it and coordinate the heartbeat.
“After a year, she was flown back to India because the heart was failing again. Before the surgery, one of the doctors cautioned me on my decision for another surgery.

He tried to discourage me saying that she would not live passed two months,” Mugisha says, “The surgery was, however, a success and a pacemaker was inserted in her heart.” She had to ask for a salary advance worth Shs13m to clear the debt.
Upon return, Dr Lwabi realised that the heart needed a generator because the pacemaker did not harmonise with the heartbeat well. In 2014, she underwent another operation to connect a generator to her heart which resuscitated her life.

She now has to get the generator replaced every four years and lives on blood thinners so that she does not bleed out and that the blood does not get too thick to pass through the St Jude valve so that it continues functioning properly. Yet in all this, Kanyonyozi is hopeful.