The 20th century was very interesting for mankind. Research in all areas including medicine, technology, and manufacturing changed the way we live. For example, people can now buy things from their phones and get them delivered at home through online shopping. Furthermore, people can return the goods if they are delivered damaged.
Unfortunately, that doesn’t hold true for human life. Being born healthy or with ailments is still totally out of our control, and that is exactly what happened in my case. My parents were so excited and happy with my birth. However, the joy was short-lived when the doctors told them that I may have a heart deformity by birth, which may be cured only through surgical intervention.
Thus began my journey in this world full of uncertainty, limitations, and ill health.
As it is said in layman’s terms, I had a hole in my heart at birth, but medically it was VSD (Ventricular Septal Defect). The treatment commenced and I was immediately put on medications for prevention of heart failure. Further tests at 1 and a half years tests suggested that I needed a ventricular correction surgery which was performed when I was 2 years old.
Things were quite normal even then. My parents identified a kindergarten not too far from where we lived, which was a lively and extremely child-friendly place. The kindergarten teachers took extra care of me and by no means did they ever make me feel out of place.
I participated in races and dance as a toddler and in KG I joined dancing which I loved. But during on Doctor’s visit, he informed my parents that I had to restrict extreme physical activities which immediately brought my dance classes to a grinding halt. I was however allowed to continue activities in physical training, aerobics, and karate. My medical condition did not affect my daily life.
But it was about to get much worse.
Deterioration
In 4th grade I had a syncopal episode. I was rushed to the hospital and I learnt that I was suffering from a rare disease called Pulmonary Hypertension after the closure of VSD at an early age.
School restarted, but things were different. It was difficult to aceept that I could do what others could. I was banned from physical training, aerobics, and karate sessions and was allowed to use the elevator for going to class.
Kids can be mean. They would stare at me when I would not do any exercise and mocked me for the black marks that covered the majority of my lower body from the abdomen to the toes. The doctors attributed that as a side effect of the medicines that I was prescribed.
Their barbs had an adverse psychological impact on me. I started wearing stockings to hide the marks.
Talk of Transplant
At the onset of summer in 2011, we took a trip to Canada with close family. One of my uncles who happened to be an experienced cardiologist who suggested that heart (and lung) transplant was the only option that would help me address an anatomical ailment of my heart. For reasons unexplained, my father decided to wait till I turned twenty (I was already 14 years old).
In the second year of junior college, the cardiologist advised me to take the elevator to go to the classroom, and not climb stairs. A medical certificate was made but rejected by the college. I was accused of not informing the college about my health condition before taking admission which impacted me drastically and I kept thinking about my disabilities and medical condition. I had to climb stairs to attend lectures and it was no less than scaling Mt. Everest for me. However, my willpower made me get through all such limitations.
In 2016, we took a trip to Macau, where I did the tower walk on the 69th floor along with my father. Despite knowing my health condition, I took the risk and enjoyed one of the most thrilling experiences of my life.
Meanwhile I was advised to meet a transplant doctor. My parents and I visited transplant doctors in Chennai and Mumbai who performed a series of tests on me and concluded that there is no urgency for a transplant.
As a new beginning, I decided to take admission in one of Mumbai’s finest hospitality colleges and chose to pursue B. Sc. in Hospitality Studies.
The most crucial part of the second year was industrial training. I remember the day I got to know that I was not selected for the internship due to my health condition. Two such incidents had taken place. I started questioning my ability and the acceptance of the industry of my condition if I had to take up hospitality as my career. In the third interview, I was selected and given a chance to gain hands-on experience at a 5-star hotel.
The training began. While in the bakery department, I was mainly required to refill the breakfast and lunch buffet, which required tons of stamina, pushing and pulling the cart, refilling breakfast dishes, and making sure the bakery counters had enough provision.
Everything was going smoothly until the day I had a follow-up visit with my cardiologist. My heart pressure had increased again, my lips had turned purple and I also had swelling on my feet, which was a clear sign of impending heart failure. I was advised to stop my salt intake for seven days and was also given high dosage diuretics.
With all this going on, I somehow managed to go to work until one day I blacked out and was rushed to the doctor’s clinic. 2D Echo and ECG results showed that I had heart failure. I was suffering from severe pulmonary hypertension and that I had a syncopal attack due to increased stress levels and discussed the possible treatments. A mutual decision was taken for an inhaled Prostacyclin drug which was available only in Singapore and Hong Kong and not yet approved in the USA. The drug was expensive and had to be taken with a nebulizer. Till the time the drug could be procured, I was put on complete bed rest and a soft diet due to the swelling on my lips and chin. My condition was so severe that I could not bathe by myself or even walk 50 meters. My intern and student life had come to an abrupt halt. By no means was I allowed to go to work or college, or for that matter even move out of the house.
It was a difficult time and a transition period for me as I readied to battle the dark days that lay ahead of me. The time had come now to see a transplant doctor.
Meeting the Doctor
In May 2018, my parents and I flew to Chennai to meet Dr. Sandeep Attawar and his team at Gleneagles Global Health City. They performed a transplant work up to know the severity of my condition. My registration for a combined heart-lung transplant was done for the state of Tamil Nadu under TRANSTAN (Transplant Authority of Tamil Nadu). The final results of the test would be discussed once the transplant team examined all the reports.
Once when my mother was cleaning the cupboard, she found a white little teddy bear who has a pink and white striped frock and standing ears. I decided to name her Alexia. She helped ride out all the dark times.
Thoughts of the transplant being done kept crossing my mind. What were once distant thoughts now seemed to be shaping into reality which scared the hell out of me. I was anxious, sad, terrified, all at the same time. I discovered that my lungs also needed a transplant along with my heart, which troubled me more as I had read about the low success rates of a dual heart and lung transplant. Getting through days was not easy; I cried my heart out one night. I had never imagined dealing with such circumstances at such a young age.
The final year of college was going to commence, but within a week of joining, I discovered that it was not turning out to be feasible. I was missing out on a lot of studies, as my frequency of attending classes had decreased. I was slowly getting into a state of depression, but I had not discussed it with anyone.
We visited the doctors in Chennai. The decision was made. The transplant had to be done soon. My parents and I discussed it and confirmed that we would temporarily shift to Chennai from October.
We landed in Chennai on October 4th, 2018 and I was taken for an echocardiogram. Additional medicines were prescribed, and I was advised to start physiotherapy. My name was activated in the transplant list.
Whilst waiting, I received 2 “dry runs” for transplant but it did not work out. I spent Diwali in the hospital along with my parents. I got discharged, but I was weak and had lost weight. My total liquid intake was limited to 800 ml per day.
Every year, I used to visit Mount Mary church in Mumbai on Christmas and go out with my friends. In 2018, I was in a different place, away from my friends, but I had a very special friend around, my mother. The two of us went out for lunch. I have always believed that even if I suffered from a chronic illness, I would not allow my illness to take over me. Being ill didn’t mean that I could not do things or go out and enjoy myself, provided I did not stress myself.
I rang in the New Year with the hope of getting better and starting a new journey, and on January 14, 2019, my wish came true! I got a call that donor organs are available. Quickly, the preparations began. My mother was all alone, as my father was in Mumbai for his job. Mom was anxious and nervous while signing the consent. She was told that I will be taken in the operation theatre alive, but what the outcome will be, no one knew. Knowing that I may not make it, broke her heart. She cried, but also made herself strong and believed that I would come out of it alive and well. The roots were reseeding, and a new life was birthing.
I underwent a Combined Heart and Bilateral Lung Transplant at the age of 20. A whole new life was born after a 10-hour SUCCESSFUL surgery. I was sedated for the first two days, and I had various tubes running through my body. I hallucinated about bizarre things, which is pretty normal in such a condition.
Post-Transplant
I felt grateful and alive! All seemed to be looking up until January 30, 2019, when I felt breathless and developed a fever. There was rejection in the lungs. The treatment began, and I was kept under strict isolation for 21 days. I celebrated my 21st birthday in the ICU.
After a long stay of 48 days in the hospital, on March 2, 2019, I was discharged and allowed to go home in Chennai. In between my treatment for the lung rejection continued. I was 6 months post-transplant when I was allowed to come back to Mumbai!
It was Diwali and I compared how my previous Diwali was when I counted every day as a new gift and this year, I had received the gift of life.
I took my first trip post-transplant to Udaipur in December, 2019 and celebrated my first transplant anniversary in January, 2020.
The most talked about pandemic, the COVID -19 had set in. Luckily, it was a boon for me as I rejoined my studies after 2 years and graduated in July, 2021.
I have started a small business of making handmade chocolates, cards and bookmarks.
I am glad that my positive attitude and willpower made me more courageous. I have never felt this healthy before, as I had ill health since I was a child. I would often wonder how it felt to climb stairs without getting breathless and how to stay in the kitchen for a long time without getting dizzy. My thoughts have turned into reality as I can now see how beautiful it is to do things without having much difficulty and restrictions.
The marks on my legs have faded, the stretch marks have reduced, and the color of my lips has changed which is unbelievable.
Teddy bear therapy and chromotherapy (color therapy) have helped me to cope up with all the alterations in life.
With each heartbeat and the breath I take, it will remind me of the most noble gift humankind has to offer which is “Organ Donation”.
