The ordeal of getting treatment abroad

Rachael Uwimana travelled to India for a diagnosis of her heart problem

“Your heart is fine. You may just be stressed or suffering from anxiety,” the doctor at Mulago Heart Institute told Rachel Uwimana after the checkup. She had been referred to Mulago Heart Institute by Jinja Regional Referral Hospital following several palpitations and attacks.

But this young woman knew for a fact that she was not suffering from stress her sponsors were giving her enough upkeep, she was eating well, her grades were good, she had happy friends and excellent tutors at Jinja Nursing School where she was pursuing a course in nursing.

Uwimana’s heart problems started in 2007 after she was diagnosed with hypertension. Her condition seemed to worsen each passing day.

When she visited Mulago in 2008, the doctors found “nothing wrong” with her heart, so she reported back to the doctors at Jinja hospital.

“The doctors then started treating me for whatever symptoms appeared. If it was hypertension, I got treatment for that, and if it was hypotension or palpitations or fever, I got treatment for that,” Uwimana recalls of her toughest period at school. This went on until the time she completed her course in 2011.

Immediately after school, she got a job with an NGO in Hoima District. The first two months on the job were a nightmare. She suffered several attacks, and this was when the doctors at Kyangwali Health Centre aised her to make use of her medical insurance and see a cardiologist.

In October 2011, she went to Kadic Hospital for an ECG test, but the machine was down. She, however, managed to see a cardiologist, who informed her that she had rheumatic heart disease.

“I started treatment an injection every fortnight, for up to two months, but when I went back for a review, there was no change,” Uwimana says. It was now January 2012 and her insurance had not been renewed yet. She went to Mulago, where she presented her medical records from Kadic. The doctors rubbished everything.

“Much as I got confused by this, I was relieved by the fact that at least I did not have to get the injection again,” she says. “The doctors insisted it was hypo and hypertension and aised me to review my diet.”

Between March and April of the same year, her palpitations increased and in July, she was put on alter monitoring – a 24-hour surveillance of the heart. Her doctor at Mulago then asked that she gets an Electrophysiology study (test to understand where the abnormality in the heart is).

“This could only be done in South Africa or India. I needed $5,000 [about Shs13m] to go to India and yet my insurance could not cater for it, neither could my salary nor my parents.” She had one fallback option – writing to Educate, the NGO that sponsored her nursing course. She had built some good relations, so the fundraising drive kicked off immediately in December 2012 and by March 2013, they had collected the money. This was, however, only enough to cater for one person. So this meant Uwimana would travel alone, with no caretaker.

Because she was a Congolese refugee, Uwimana found trouble getting a visa to India, so she spoke to the United Nations High Commission for Refugees to write her a recommendation. She also went to the Jehovah’s Witness offices, a faith she belongs to, to liaise with the branch in India to get her visa clearance.

Global Health City, Chennai, had been recommended by Mulago doctors. When Uwimana arrived at the hospital, she was taken straight to the emergency ward because she was “fainting off”. She spent seven hours in the emergency room.

“I had heard of weird stories in Indian hospitals, so I was worried about my organs being stolen. Good enough during the operation the next day, I was semi-conscious,” she says.

“After the Electrophysiology study, I got an attack. The doctors were not amused, because they wanted the attack to happen during the surgery, so they could find out the problem,” she recalls. She would spend the next 48 hours in the Intensive Care Unit.

Her intended three-week stay in India extended to four weeks, and yet the doctors still found nothing. They suggested because of her background she could probably be suffering from a psychological problem, so they assigned her a psychiatrist, but she was fine.

The doctors then assured her that there was a problem, but they could not tell what it was.

“They asked me to stay longer for more tests and studies, but of course I had run out of funds. So I came back home, but with a belief that I was well,” she says.
The doctors in India had also suggested that she gets a satellite device attached to her heart so they could monitor it, but there was no money. When she asked about the device in Mulago, they told her it could be got in South Africa at $1,500 (about Shs3.9m).

“I have seen the top most cardiologists in the country, neurosurgeons, gone to different hospitals, but each always has a different take. Not that the doctors have failed, but they do not have means to help explain my heart problem.”

“The heart institute at Mulago is strong with experienced and dedicated doctors, but there are no machines to aid their work. Imagine every ECG and ECO test has to be done in Mulago. At least each referral should have one, to save costs.”

Uwimana adds that it would have saved her much if Mulago had the machine for the Electrophysiology study, then she would only have to go to India for treatment or surgery.

Drugs have become part of her menu, and she won’t go to places alone because anytime she could get an attack. The doctors say they have an idea of what ails her, but wish they only had the machines to be sure.

Evelyn Adikini had rheumatic heart surgery at Mulago

Evelyn Adikini is two months pregnant and she is excited about it. She also cannot help sharing the fact that she can lift two 20-litre jerrycans beyond five metres. Five years ago, she could not even dream of doing this.

She sits at Mulago Heart Institute, waiting for her doctor who is about to prescribe a new drug that will not affect her pregnancy.

This young woman was first diagnosed with a heart problem in Primary Six when she started losing weight. A first check up at St. Francis Tororo Clinic revealed that she had a problem with her liver. But when her condition did not change, she went for a second X-ray and this was when the heart problem was discovered.

When Adikini visited Mulago, the doctors told her she had rheumatic heart disease, so she began treatment. Her condition seemed to stabilise, but in 2007, she had a terrible attack after receiving bad news.

“Plan, an NGO, had offered to fund my operation, but they said they could not, so when my brother called to give me the bad news, he just asked me to go home. When I heard that, I thought somebody had probably died,” she says.

When she went back to Mulago, her doctor told her that if the operation was not done by 2009, she would not make it. She needed Shs50m to fund the treatment, but she did not have even a quarter of the amount needed. She was already spending so much on medicine.

The doctors at Mulago had also told her that her condition was special and surgery could only be done in South Korea.

Little did she know that the stars would shine on her that very year. And so on March 31, Adikini was operated on by a team of 21 doctors funded by Hwan Sung. Sixteen of them were South Korean doctors and the rest were from Mulago. Among the Ugandan doctors was Dr John Omangino, the director of Mulago Heart Institute.

Some of the machines the doctors used were brought in by the doctors, since at the time, the institute lacked a fully-fledged team to handle the operation.
One of the doctors who worked on Adikini says they indeed lacked equipment, and that the operation was more of a test exercise by the South Korean team, to see how ready the Mulago doctors were for heart operations.

Asked if she would consider the surgery successful, Adikini says, “Definitely! My life was saved, and my trust in the hospital increased because I was the first person with this condition to be operated on at Mulago.”

Besides the slight paralysis she has in her right leg after the last attack she got before surgery, the mother-to-be seems happier, and would recommend anyone for surgery at the national referral hospital.

“I think most people just fear to be operated on by African doctors. I know a friend’s mother who says African hands have bad luck, so she would not dare put her life in the hands of an African doctor. But I know about three people who have had operations in India and other countries, and they have not made it,” she says.

A doctor at Mulago Heart Institute who preferred not to be named says they have since acquired some of the equipment for carrying out rheumatic heart disease, although they still lack some of the essential ones such as the sizers (machines used to measure that position where the heart is placed).

He adds that the operations costs about $12,000 (about Shs31m) the valves alone cost $2,000 (about Shs5.2m).
“Most of the equipment is there, and when we have the valves, we do carry out the operations, but when we don’t, we send our patients for operations abroad. It is like running a four-wheel car and you only have three wheels,” the doctor says.

SOURCE: Daily Monitor

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