Hvovi’s Heart

My daughter, Hvovi Minocherhomji had been diagnosed with irregular heartbeats called arrythymia as a child when she was in school standard 8th. Luckily, school life was relatively symptom free. She was on medication and managed well with it for a few years. Fatigue and dark spells were common but not enough to restrict her daily life.

After completing her SSC she went to a college in town where the daily train commute was for 20 minutes and two railway bridges had to be climbed while going and coming. Slowly fatigue started setting in and she used to get breathless frequently. With time, in 2011, when she was 19 years old, the illness progressed into congenital cardiomyopathy. Our family’s first reaction was disbelief. How could this beautiful, strong, seemingly healthy child, who never even suffered from common childhood ailments, be as desperately ill as the doctors were saying she was?

The sheer terror we felt on first hearing about her condition from the doctors slowly receded as months passed without her exhibiting any of the symptoms we had been told to expect. Hers was a progressive disease with no known cure. We were, however, clutching on to the hope that the slow rate of progression of her myopathy might mean that she would remain symptom free until she reached her forties at least. We were also told by doctors that the disease takes time to progress. The fact that she was leading a relatively normal life even months after the doctors had offered such a grim prognosis lulled us into a further sense of security.

This was shattered on the evening of December 18, 2012 when she suffered a stroke due to the impaired functioning of her heart. Unable to speak, and with her right side paralysed, the gravity of her illness was brought home to us with sickening force. Although she recovered almost miraculously from the stroke with only a minimal deficit in the functioning of the fingers of her right hand, the horror of that episode left her mentally shattered. It took her many months to regain some semblance of confidence and put the fears of another stroke occurring behind her.

After the stroke, Hvovi’s condition steadily declined. She suffered from breathlessness, fatigue and severe headaches. Her heart functioned at only 25% of its normal capacity. At an age where she should have been spreading her wings and discovering life and all it had to offer, it was incredibly hard to see my daughter confined to her bed, each day a struggle that left her exhausted and despairing.

This was when, in desperation, we first looked at the idea of a heart transplant for her. At that time, however, we were convinced that successful transplants were only carried out abroad, and that the wait for an organ after being placed on the organ recipient list could be extremely long. Add to that the logistics of moving bag and baggage to a foreign country where we knew no one, for an unspecified period of time, and the expenses involved, which would be phenomenal. The very idea was overwhelming, and seemed totally impossible.

It all came to a head on the 9th of October 2013. That afternoon she had completed her final Bcom exams and we were out celebrating with family. It was she who insisted on going out for lunch thank god for that for had we been at home she would have most probably been asleep and secondly we would have been far away from any hospital. The place where we were for lunch was a two minute walk from the hospital. Just as she finished her soup she said “daddy I am not feeling good” and collapsed. With the help of the hotel staff we carried to the car and in seconds we were at the hospital.

When she collapsed and had to be rushed to Holy Family Hospital. She had no pulse, no blood pressure and no heartbeat. The cardiac team under Dr. Brian Pinto battled heroically to revive her even when all hope seemed lost, and after 45 minutes, they managed to get her heart beating again. Again, miraculously, even though her brain had been deprived of oxygen for so long, she showed no deficit after this episode.

We were bluntly informed by the doctors that my daughter had not more than a few weeks to live, as her heart was deteriorating extremely rapidly. Her only chance, as per Dr. Brian Pinto, was a heart transplant. He strongly recommended the Fortis Malar Hospital in Chennai, where they had an excellent transplant team headed by Dr. Balakrishnan, whom he knew personally.

With our backs to the wall, and having no other options whatsoever apart from helplessly standing by and watching my daughter die, it suddenly seemed a very easy decision to make. No matter how scary the thought of a transplant seemed, the alternative was scarier.

A preliminary meeting with Dr. Balakrishnan filled us with hope. Here was a doctor who inspired trust and confidence. Within a week, we flew down again with my daughter and completed the formalities and tests necessary to get her enrolled on the recipients list of the Tamil Nadu Government organ donation program.

In an alien city, under the most trying of circumstances, Fortis Malar became our home, and the entire cardiac team our family. Not for an instant did we feel alone and hopeless. The kindness of strangers, who gravitated together bound by common suffering, alleviated our fears and helped us on this most difficult journey.

The most emotionally draining part of the whole experience was the wait for word from the hospital regarding availability of a suitable heart. As each day dawned, we were filled with hope that today would be the day we would receive the news we so eagerly awaited. As each day drew to an end without that much awaited phone call from the hospital, we were filled with despair. Yet another had day gone, with my daughter’s condition worsening by the day. Would it be too late for her by the time a heart became available?

Apart from her deteriorating physical condition, Hvovi had become extremely fragile emotionally. She was close to breaking point. Wracked by homesickness, her frail body ravaged by illness, she lost the hope and courage she had held on to all through the last two years. Her condition was worsening by the day. She was pleading with us to take her home, unable to bear her suffering, ready to face the certain outcome of returning without the transplant.

Just when it seemed that we were all at breaking point and ready to abandon all hope, God worked his miracle. At 5 am on the morning of June 19th, 2014 the hospital called. A heart that seemed to be a match for my daughter had become available.

By 7 am, we were at the hospital. Another candidate for a heart transplant, an elderly doctor with the same blood group (O +ve) had also been called. The heart would be given either to him or to my daughter, whichever of the two proved a better match. Blood was drawn from both for the test. The wait was agonising. What if the other person was a better match for the donor heart? Would we be sent back home to wait until another heart became available? Would my daughter be able to survive until then?

We were weak with relief when the doctors informed us that the heart was a perfect match for Hvovi, and that the transplant would be carried out after a team from Fortis hospital went to the Government Hospital to harvest the heart from the cadaver. In the midst of our joy, we sent up a prayer for the aspirant who had been sent back to continue the wait for another heart.

The recovery of the heart from the donor cadaver took much longer than expected. The heart is always the last organ to be harvested, it can be removed from the cadaver only after all the other organs to be donated, like the liver, kidneys, and eyes have been removed. A hospital in Vellore had been allotted the liver and the team of doctors from that hospital had been held up due to some reason. It was late evening by the time the donated heart reached Fortis Malar Hospital.

It was then that we saw another miracle take place. The longer the period between harvesting of the donated heart and the transplant, the lesser the chances of success. The time lapse between harvest and transplant should be minimal in order to prevent the tissue of the donated heart from dying before it reaches the donee. The donee hospital was 13 kms away from Fortis Malar Hospital. It was 6 pm in the evening, peak traffic time, along the most congested stretch of road in all of Chennai, a journey that would take 45 minutes to an hour in the normal course. With each minute that the harvested heart took to reach my daughter, the odds of a successful transplant would diminish.

That was when Chennai showed what a big heart it has. The Traffic Police Dept was authorised by the Tamil Nadu Govt. to create what is called a ‘Green Corridor’ all along the 13 km route that the ambulance transporting the heart would take to reach Fortis Malar Hospital. Traffic cops armed with walkie talkies were stationed at short intervals all along the route to make sure that all signals which the ambulance was approaching were turned green. Peak hour Chennai traffic was halted along the route for 45 minutes to allow the ambulance to pass without hindrance.

A journey that would have taken 45 minutes under normal peak hour conditions at that time of the evening was completed in 13 minutes flat. Three agencies – the Chennai Traffic Police Dept., the Chennai Police Dept., and the Govt.Of Tamil Nadu, along with the wonderful people of this city, came together to ensure that the heart reached my daughter, a girl who was not even a resident of Chennai, in the shortest possible time.

It is impossible to describe our feelings when the ambulance, sirens screaming, drew up to the hospital with the heart that would save my daughter’s life. Amidst applause from the gathered press and general public, the heart was rushed up in its special container to the operation theatre where my daughter lay sedated and prepared for the transplant.

The operation lasted for five hours. At precisely 10.30, the new heart started beating for the first time in my daughter’s chest.

Now it was time for a new terror – rejection of the alien organ implanted into her body. The first few hours and days after the transplant were very crucial. Would her body accept the new heart? It would be unbearable if after all she had been through, her body would not accept it, and she showed signs of rejection of the new organ. Rejection and fear of infection were what we feared at this stage. Because of the high dosage of immunosuppressant drugs she was on to prevent rejection, her body was extremely vulnerable to any infection. She now lacked the ability to fight any infection at all. Even a normally common infection could prove fatal for her.

The morning after the transplant, the effects of the anaesthesia wore off, and even though she was in intense pain, my daughter shed tears of happiness at the prospect of freedom from the life of pain and illness she had been leading. She hadn’t cried as much in the years of ill health and suffering as she did on the day after the transplant. Her tears just wouldn’t stop. These were tears of hope, and relief, that the unrelenting nightmare of the last two years had ended.

Her happiness, and ours, wouldn’t have been possible without the supreme act of selflessness performed by the mother of a 23 year old boy killed in a road accident in Chennai. In her deepest hour of grief, this brave lady gave the gift of life to desperately ill people by deciding to donate her brain-dead son’s liver, kidneys, eyes and heart.

All the wonderful work being carried out by the Tamil Nadu Govt Organ Transplant Program, and the efforts of the various agencies towards making the Program a success would be in vain if it were not for the generosity of ordinary people like the boy’s mother who, putting their own grief aside brought light into the life of others.

Hvovi has a long road to walk yet. She will be on medication all her life in order to battle rejection of the transplanted heart. Utmost care will have to be taken to avoid even innocuous infections like colds. But each day that she steps out living the life she had been robbed of for the last few years, is nothing short of a miracle. Our hearts are filled with gratefulness. To the wonderful doctors, to the hospital, to the city of Chennai, and most of all to the boy whose heart beats in my daughter’s chest, and to the strong, lovely lady who is his mother.

We were back in Mumbai post transplant after a month the Doctors and the total care taken by the hospital in Chennai was an eye opener for us the dedication of the doctors’ towards such patients the entire cardiac unit looking after transplants is continuously on their toes walking every step with you. The Doctors take the trouble to keep in touch with Hvovi find out how she is doing. A group called Braveheartzz has been formed by the transplant patients and their family on Whats App to give courage and answer all the doubts of transplant patients.

Hvovi is now doing her MCom through Mumbai University she wants to work for the cause of organ donation, but unfortunately in Mumbai there seems to be little scope. She has completed a one month course with MOHAN Foundation in Chennai as a transplant Coordinator. The experience was wonderful for her and it has further strengthened her resolve to work in this field. She has met a few Doctors of various hospitals in Mumbai and is exploring the same.

We have spoken to a lot of patients and helped ease their fears with regard to the heart transplant. On our visits to Chennai we interact with the patients and their relatives who are waiting for a transplant or who have had a transplant. It’s our way of giving back to the world what the world has given us.