IN THE UAE

Marwa Al Ma­mari’s life turned up­side down when she was di­ag­nosed with a car­diac con­di­tion and had to un­dergo a heart trans­plant. On the eve of World Heart Day, Tessy Koshy meets the young woman in Umm Al Quwain to find out how she is re­cu­per­at­ing

Friday - - CONTENTS - PHO­TOS BY AIZA CASTILLO-DOMINGO

On the eve of World Heart Day, we speak to 22-year-old Marwa Al Ma­mari, who after a heart trans­plant says she’s tak­ing each day as it comes.

‘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 to­mor­row, 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, USbased 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 post­op­er­a­tive care.

In 2017, through Al Jalila Foun­da­tion’s A’awen pro­gramme Marwa was able to fly back with an as­sur­ance of re­ceiv­ing post­op­er­a­tive 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.’

‘When the Al Jalila Foun­da­tion stepped in to sup­port me to re­ceive the best care in the UAE, I was yet again filled with hope’

Marwa and her mother at a spe­cial event called Glam­our for Good at Palazzo Ver­sace Dubai. The event was spon­sored by Al Jalila Foun­da­tion

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