Walk With Me
I was born in Kandy to middle class parents, and am the oldest among three siblings. Even though they were of modest means my parents made sure that my sister, brother, and I were always well provided for. I was schooled in Good Shepherd convent in Kandy. Even as my school was a Catholic school and I was a Buddhist I never found it a problem. As a matter of fact most of my friends were Catholic, some were Tamil, some Muslim, but we all got along quite well.
My school years, as most of my life were joyous ones. Yes, I suffered because of my health, but I never was one to sit back and let an illness control me. However, there were times that my health kept me from doing what I wanted to. I loved athletics and swimming, but I never could finish a 100-meter dash or a more than a few laps in the pool.A visit to the doctor was almost a weekly occurrence,inhaler my life companion.Sports were beyond me but there were always other activities to keep me active. I was a member of the choir, a school prefect, junior bandleader, a member of the Interact Club, and a member of the Science Society. Even these were not easy, everything that was normal to most was a struggle for me,
but I did what I loved and enjoyed it thanks to my companion,
After completing school I moved to Colombo to start my Bachelor’s degree in Computing at the Singapore Informatics. Soon after I moved back to Kandy to teach. A few months in to teaching I received an offer to continue my education in Sydney Australia. So in 2007 I left for Sydney to attend the University of New South Wales where I completed a graduate Diploma in Computing.
After moving to Sydney, my condition got progressively worse. Perhaps it was the dry weather, perhaps it was the long hours of work and study, but the result was a more exhausted me. I found it hard to even climb stairs, things were getting worse and I really had no idea what was going on. While doing my Masters, I started working as an assistant at a school cafeteria, then as a function waitress for the same company where I sometimes worked opto16 hours straight. At the same time I worked at a KFC outlet as well where I started as a Store Assistant and was later promoted to Assistant Store Manager within few months. My days were quite full. I used to wake up at 6 in the morning go to work at KFC; then at 4 in the afternoon to classes straight after work; and from there to my other job. It was not an easy life, but I enjoyed it because I knew I was being independent and taking the burden off my parents.
During winter the weather became even dryer and breathing got harder and harder. I felt as if my nose was not functioning at all, and I always had to breathe with my mouth. Running behind to catch a bus became a problem. So I always made it a point to start walking 30 mins before the bus comes. Even the 10-minute walk to the university became a problem, and I had to resort to taking the bus. Even walking from one building to another was becoming difficult for me as the campus was on a hill. So I used my Staff ID to get on the elevator and crossed from building to building till I reached the top. Now I was feeling as if I was losing mobility, the freedom to go where I wanted when I wanted. This to me was quite devastating. I could not even carry groceries up to my apartment.Realistically I was lost; I had no idea what was happening, but I knew there was something very wrong and it was only getting worse.
In 2009 I returned to Sri Lanka and started to work as a lecturer at a leading private university. While working there I continued my MBA from Edith Cowan University in Western Australia. Now, my condition had deteriorated further to a point that I could not even climb one flight of steps without panting. Activities like dancing that I enjoyed quite a bit were no longer an option because I had to stop and take a break every few minutes.
Many things I enjoyed were now just a “something I did back then.”
One day in 2010, the lift was out of service, and I had to rush up 3 stories to reach my class, as I did not want to be late to class and set a bad example to my students. As soon as I greeted the students and started the lecture I felt out of breath and suddenly everything became a blur. The students were scrambling to help me asking, “Miss are you alright? Do you need water? You are going blue.” I took the bottle and took a few gulps of water and hurried back to the staff room. My colleague helped me by rubbing my chest because I was suffocating. After I got a bit better, I called my cousin and with my mother went to see a doctor at a leading hospital in Colombo. So the doctor checked me and asked, “did you have breakfast?” I said “just my tea.” He wanted to know exactly what happened so I said, “My heart started pounding super-fast, and I couldn’t breathe at all. Then my body went blue and everything around me became a blur.” His response to this was, “you have experienced palpitations. That is because you have severe gastric [acid reflux]. So you need to make sure you eat all meals properly and on time.” When a doctor says that how can you disagree; and my mother was like “the doctor must be right look at your size you don’t eat that’s the main reason for all your illnesses.” I knew this just did not make sense so I consulted another doctor, but to my disbelief, the diagnosis was the same.So now my life was tied to Gaviscon, my new best friend. Wherever I went, Gaviscon went with me.
In October 2010, I went to visit my sister who was residing in Singapore and went to tour both Singapore and Malaysia. While in Malaysia at an amusement park, another such incident happened as I boarded a roller coaster. Thankfully I was let off due to my cousin’s insistence.
After getting back I finally went to see an Ear, Nose, and Throat Specialist. The diagnosis this time was that the right side of my nose was blocked and that was why I was breathing from my mouth. I was ecstatic. I felt I finally found what was wrong with me. I had my surgery on the 26th December, and I remember thinking while in bed on the 31st December that 2011 was when I would get my life back, or rather the life I never really got in the first place. My sister got engaged a week after in January.
I was still not a 100%, but the doctor’s response was that since I had been breathing from the mouth all my life I now needed to train my nose to breathe, similar to doing physiotherapy for a broken leg. He then introduced my next companion, the water bottle. His instruction was to take a sip of water if I found it hard to breath from my mouth.
I ended up gulping down about 6 liters of water per day!
My sister got married in June, and thanks to the surgery and my new companion I was able to help by planning the wedding. She then moved to the US to start the next chapter of her life, and I felt I too was starting a new chapter, a happier healthier one. After all I could breathe better! So, I started my own Event Management Company, and as always, I took it upon myself to make sure everything was perfect. This was a hectic time for me. I completed my MBA, and I travelled frequently to see my sister in the US and to the UK to see my brother. I still had problems breathing but my companion the water bottle helped, so things seemed better.
In 2012 while on a call with a friend, my pulse suddenly started to rise, and I felt my fingers were going numb. I went to search for Gaviscon, but before I could reach it my hands had gone completely numb. I voice dialled my neighbour who then called the Medi-Call service. The doctor’s diagnosis this time around was severe acid reflux due to cheese! So now it was a healthy diet and whenever I had palpitations, it was a yoghurt and Gaviscon. Oh, and also water when I could not breath.
By the end of 2013, I started to work as a Project Manager for an IT firm. My office was on the third floor and again there was no elevator! I could only walk a few flights before I had to take a 5-minute break. The water helped, but it was not enough. With all this I still did my other jobs as well: my event management business and lecturing. No matter how busy I was I made it a point to go home to Kandy every Friday and see my parents and get back to Colombo by Monday.
Things again got worse on a trip I made to London in 2014 where I once almost blacked out. It was during this time I also got involved with the Educate Lanka Foundation led by Manjula Dissanayake, together with whom I organized and even participated a Charity Walk in Colombo to raise funds and awareness for the organization. But my condition got worse over the next twelve months. In August of 2015 when I was in the US with my parents, another episode happened whilst we were travelling.
So I resolved to go and see a pulmonologist or a cardiologist as soon as I reached Sri Lanka because with all these diagnosis and the proceeding medications, my condition really was not improving. So I went to see my family doctor and got a letter from him to see a cardiologist.
The cardiologist realized that there was some sort of an abnormality in my pulse and finally decided to perform an echocardiogram to investigate it.
The doctor was then able to diagnose my condition immediately as an Ostium Secondum Atrial Septal Defect or in laymen’s terms a hole-in-the heart.
He also discovered that due to this condition my pulmonary pressure was unusually high as well. I was then referred to specialists in Colombo for further testing where after confirming the diagnosis one of the doctors handed me, for the lack of better words, a death sentence as well. Quite bluntly he said that my condition couldn’t be treated anywhere in the world, and even refused to give me an Oxygen prescription to travel to another country to get a second opinion. Hence, I travelled back to Kandy to the same cardiologist who initially diagnosed me, and from him, I got the Oxygen prescription and the rest of the documents needed to travel to the US.
The doctors at Johns Hopkins confirmed the diagnosis, and went on to add that the condition was irreversible as the damage was too extensive. According to them, the pressure in the right side of my heart is much higher than the left, and as a matter of fact far higher than they have ever seen in any other patient. Due to this abnormality it is only a matter of time until the right side seizes to function entirely. The worst part of it is that, no one knows when that day would be. This is why the doctors have said that a heart and lung transplant is my only hope. However, the cost is a main caveat as they initially estimated it to be in the range of $600,000 to $1 million.
This is why my sister Charuni, her husband Kanishka, my parents and brother, my friends, and I started the Walk With Shavi campaign. The responses we got were nothing short of astonishing. Within the first week we were almost at $100,000, and to date we have surpassed $300,000!
I am so very thankful to everyone who has joined me in my walk. It truly is a special feeling to receive the compassion of a complete stranger, a person who has never met you, spoken to you, or even heard of you before.
I am not the only Sri Lankan fighting a life and death battle because of this condition; I am merely one person who was blessed enough to come to the US for another chance and was blessed enough to be in the company of people who were in a position to help me. I have been receiving many emails from others back home that are suffering from pulmonary issues asking me to ask my doctor if their medications are correct.