‘They would prick me with needles everyday to take a blood sample,’ Marwa Al Mamari, points out, stretching out her hands and showing me the needle marks. Atuf, Marwa’s elder brother, looks at her indulgently. ‘Yeah, she has no blood left in her, they have taken it all out,’ he teases her fondly. They both burst out laughing.
Seated in their modest family home in Umm Al Quwain, the Omani siblings try hard to lighten the sombre mood in the room. Their smiles belie years of physical pain and emotional trauma following a disturbing diagnosis about Marwa’s heart. The only way she could live was to get a new heart through a transplant.
Dressed in a black abaya, a coat of fresh brown lipstick over her lips, 22-year-old Marwa’s slender fingers often unconsciously cover her pearly whites bound together by a set of steel braces. Her dark eyes are ready to well out as she recalls years of frequent hospital stays, agonising medical procedures and the enormous amount of medications that went behind her successful heart transplant in 2015 at the German Heart Center, Berlin (DHZB).
‘Even today when I wake up, the first thing that comes to my mind are hospital scenes – doctors, nurses, drips, syringes… then I am jolted back to reality that I am finally home, alive with a donor heart,’ Marwa’s voice trails off.
On the eve of World Heart Day on September 29, Marwa’s miraculous heart transplant story brings hope to millions of heart patients worldwide.
Cardiovascular disease is the leading cause of death and disability today. According to the World Heart Federation 17.5 million people die globally every year from cardiovascular disease. In the UAE too about 30 per cent of deaths occur due to cardiovascular disease.
For Marwa, life turned upside down six years ago. In 2012 aged only 16, the grade 10 student of a local school in Umm Al Quwain found that she had abruptly started losing weight drastically. ‘From leading an active life like any other teenager of her age she unexpectedly started feeling extreme exhaustion. So tired was she that she could not muster the strength to go even to school,’ Atuf says.
A battery of medical tests at Al Mafraq Hospital, Abu Dhabi, revealed that Marwa had dilated cardiomyopathy. A progressive disease, in this condition the heart muscle becomes weak as a result of which the heart is unable to pump efficiently. She was put on several medications and recommended for further treatments even as doctors closely monitored her condition with regular follow-up visits.
Youngest among seven siblings, Marwa’s life-threatening diagnosis shocked and shattered her family. ‘Marwa was healthy and had always been a cheerful girl, adored by her friends and teachers,’ shares Atuf. ‘But after her diagnosis she was no longer going to school or meeting her friends. Her life revolved around clinics. This made her anxious. She dreaded each hospital visit. Seeing her suffer we were all deeply impacted.’
Dilated cardiomyopathy puts patients at greater risk of heart failure. Medications alone could not support Marwa’s heart and she was advised to be fitted with a pacemaker (a small device fitted in the chest to regulate the heartbeat). ‘I had always disliked visiting hospitals and here I was in and out of a hospital ward, undergoing various tests, eating loads of medicines and still not feeling any better,’ says Marwa. Due to several health complications Marwa could not be fitted with a pacemaker. Around this time the family was hit by yet another tragedy when Marwa and Atuf lost their father, a watchman at a school, to cancer. ‘I would just cry for days, heartbroken with life. Finally, it was my mum who pulled me out of the constant misery. Her steely resolve gave me the strength to pick up the pieces of my life. She wanted me to be well and in the face of our double misfortune, she kept us all together,’ says Marwa.
By now doctors in Dubai advised the Mamari family that the only way to save Marwa was to replace her weak heart with a new one from a donor.
Dr Rakesh Suri, chair of Thoracic and Cardiovascular Surgery at Cleveland Clinic, Abu Dhabi, says heart transplants are typically reserved for patients who have tried medications or other surgeries, but their conditions haven’t sufficiently improved. ‘These patients are suffering from end-stage heart failure and need a new heart, without this they would die,’ he adds.
To the moderately educated Mamari family with limited financial resources, a heart transplant was unheard of and unimaginable. The cost of a heart transplant is around $ 1.4 million (Dh5.1 million), as per a 2017 study by Milliman, US-based actuarial firm. ‘By no means could we muster the money for the transplant. So, we sought help from many people and institutions. But nothing was working out until in a generous move, the Dubai Health Authority with the help of the office of The Crown Prince of Dubai, agreed to sponsor Marwa’s heart transplant in Germany,’ says Atuf. The first heart transplant in the UAE was performed only in 2017 by a team of doctors at the Cleveland Clinic, Abu Dhabi.
A few months later Marwa along with her mother flew to Germany in the hope of a transplant. She was admitted in a hospital in Berlin. One of the first steps in the heart transplant process is a heart evaluation.
The evaluation would involve several cardiovascular and general health tests such as echocardiogram, electrocardiogram, heart catheterisation, pulmonary function tests, cancer screening, urine analysis and a host of blood tests. Depending on the results of their heart evaluation patients are placed in a heart transplant category.
Status 1a is considered for those in urgent need (they require intensive care hospitalisation); status 1 b patients are dependent on mechanical assist-devices, they can be in the home or in the hospital; and status 2 patients are those stable on oral medications. As Marwa was not an intensive care patient at that time she was put on the organ waiting list.
According to statistics by the German Organ Transplantation Foundation, on December 31, 2016, there were 10,128 people on the waiting list for an organ in Germany. On an average, three people die daily because no compatible organ becomes available in time due to the mismatch between organ demand and organ donations.
‘Being in a new country, away from home, it was hugely disappointing to know that the organ transplant would not happen immediately. I had pinned all my hopes on getting a new heart and being able to get my life back,’ recalls Marwa. The doctors decided to implant a left heart support system type Heart Ware, considered a bridge until the heart transplant.
The silver lining for Marwa was that the doctors encouraged her to try her best to live a normal life. In Berlin, a green city of gardens and lakes, Marwa found a new lease of life. ‘I had some unforgettable experiences living in Berlin. The most memorable was seeing and touching snow for the first time. Going for walks in the big gardens, occasional cinema outings and making new friends, all made me very optimistic about life,’ she says.
The picturesque surroundings ignited in her a deep desire to capture the scenic city in her camera. Seeing her interest in photography the family gifted her a Canon professional camera. ‘As months went by I witnessed different seasons in the city and had learnt a smattering of German. I was more confident to venture out and loved clicking the beautiful landscapes and portraits of my new friends,’ says Marwa.
The family took turns to be with Marwa, when their mother had to fly back to the UAE. Between frequent hospital visits and discovering life in Berlin months turned to years. As Marwa needed to take several medicines and undergo frequent blood tests to monitor her condition the wait for the organ transplant seemed never ending as they had already been on the list for over two years. Surgeons need to transplant a donor heart within a certain amount of time. So, the patient on the transplant list needs to be near the hospital, able to reach within four hours.
Then the unthinkable happened. One day in early 2015 Marwa suddenly collapsed. She was rushed in an unconscious state to the hospital emergency. She had suffered a brain stroke. ‘I received a distraught call from my mother that Marwa is lifeless. It was a stressful time for the entire family. We thought we had lost her,’ recalls Atuf, who was in the UAE at that time. The doctors had to perform a brain surgery to restore her health. ‘This incident completely shocked me. I was ill for a long time and stayed in hospital for many weeks. There were frequent blood tests, one blood sample was taken every day. I was tired and started getting hopeless,’ Marwa laments.
The stroke made Marwa in need of an urgent heart transplant. Her doctors did not want to lose any more time. Around this time, due to several medications she was consuming, she started experiencing mood swings. ‘She changed a lot. Her confidence and optimism was low. We were all praying every day for the heart transplant to turn things around for her,’ says Atuf.
Four months later, in April 2015 out of the blue when they least expected it, a call came from the hospital. ‘You need to rush here, we have found a donor heart for Marwa,’ recalls Atuf. Suddenly everything began to move rapidly. Marwa swiftly reached the hospital with her mother. The doctors conducted a final evaluation to determine her health before the surgery on April 4, 2015 – two weeks before her 19th birthday.
‘All heart transplant operations vary in time, depending on the complexity of the patient’s condition. For the first heart transplant conducted in Cleveland in December 2017, the patient was in the operating room for six hours. The donor heart started beating immediately after implantation,’ says Dr Suri, who was part of the team of the doctors who conducted the milestone surgery in the UAE.
Both Marwa and Atuf cannot recall the exact duration of the transplant. All they recollect is that it was a long and anxious day. For Marwa it felt like a dream she was waking in and out of. ‘One minute I was rushing to the hospital for my much-awaited surgery, the reason I had come to Germany three years ago and the next moment I was in the ICU for post-operative care. For days I was tired and felt drowsy,’ she reminisces.
Even after the transplant when the patient leaves the hospital they are closely monitored by the transplant team. The most crucial aspect is a sign or a symptom of organ rejection that doctors want to evaluate. These could include shortness of breath, fever, fatigue, scanty urination and poor weight gain. Follow up tests include blood tests, echocardiograms, electrocardiograms and heart biopsies. ‘Unfortunately for Marwa the following months after the transplant on several occasions there were signs of heart rejection. In panic we would rush her to the hospital. We did not want to lose her again,’ says Atuf.
The complications and their subsequent treatment prolonged Marwa’s stay in Germany. ‘The biggest learning for us was that the heart transplant was not a cure. It is just the only option to stay alive and one that came with its own set of struggles,’ sighs Marwa, who had to continue living close to the hospital in Germany for doctors to keep a check on her condition. After many years of living away from home she was physically and mentally tired. The only way for her to be back home in the UAE was to continue receiving quality post-operative care.
In 2017, through Al Jalila Foundation’s A’awen programme Marwa was able to fly back with an assurance of receiving post-operative treatment in the Cleveland Clinic, Abu Dhabi. ‘When the Al Jalila Foundation stepped in to support me to receive the best care for my condition in the UAE I was yet again filled with hope. This meant I could live with my extended family and be at home,’ says Marwa. As part of her post-operation treatment plan she underwent regular follow-ups including blood tests and heart biopsies at the Cleveland Clinic.
‘As part of post-operative care, the transplant patient needs to receive immunosuppression medications to lower their immune system so that their body does not reject the transplanted organ. They require regular assessments to monitor immunosuppression medications and imaging studies which confirm that they are on the track of recovery and are not rejecting the new organ,’ explains Dr Bashir Sankari, chief of the Surgical Specialties Institute in Cleveland Clinic, Abu Dhabi.
As their bodies gradually regain strength, transplant patients are advised to eat healthy, exercise regularly and avoid close contact with people who have infections. The intense follow ups for the first year post transplantation drop later on to a quarterly visit. Most patients who receive a heart transplant go on to enjoy a high quality of life and can live for many more years, according to doctors. It’s important that they stay healthy, eat well and exercise.
Three years after her transplant, Marwa today lives with her family in Umm Al Quwain. The past years have been tumultuous for the young girl. When teenagers her age are busy excelling in school and making career plans, Marwa takes at least 10 medicines every day and keeps a close check on her health. Surrounded by her little nephews and nieces, chatting with us in her living room she tells us that she is eternally grateful to the unknown person whose heart beats inside her and hopes to do many things in future. ‘I want to complete my studies and I have already started my education from home. I have re-connected with my childhood friends and we chat a lot on WhatsApp. I continue my photography and post my clicks on my instagram account. But besides all this I am really taking each day as it comes.’