I have often had moments of despair when I have questioned the existence of humanity and goodness in the world. Having a congenital heart disease and pulmonary hypertension right from when I was born has certainly not made my life easy. It gave me a gloomy outlook on everything.
The silver lining to this chronic medical condition was my job. I loved my job and often told friends “I was born to do this!” They would chuckle but know in their hearts that it was true. I worked hard to not stress and work out regularly to keep my pulmonary hypertension in check. And this worked just fine for me until the age of 27.
When a chronic cough progressed to breathlessness to sleeplessness to the inability to walk, I had to write to my boss with a heavy heart to inform him that I would be off for a few weeks. Those few weeks turned into a month and eventually into a year. A lot changed in my life during that year off from work. A few hospital visits, a few hospital admissions, a few scares and finally the doctor uttering those 20 words which rattled my world – “You will need a double heart/lung transplant and we need to put you on the organ waiting list right away. Without the transplant, you might only have 16-18 months left.”
Pre-transplant phase:
I was soon referred to my transplant unit which itself was uncomfortable with awkward ‘hellos’ and serious attempts by people around to lighten things up. Referral to a transfer unit is both a relief and a scare.
The elephant in the room was “Am I fit for a transplant surgery?” And thus began my series of never-ending tests which are termed as the ‘pre-transplant work up.’ I began visiting St. Vincent hospital every 6 weeks for 2-3 days filled with needles, syringes, pills and claustrophobic machines. With every new test or intervention, I would hold my breath praying the findings are ‘normal.’
By God’s grace I completed all my assessments without any complications. The last leg of the pre-transplant workup was meeting the transplant surgeons who need to assess whether they would be able to technically conduct the surgery considering my unique anatomy and what would be the probability of finding the right match of organs for me. They take these calls based on years of knowledge and experience but for you, it is a 50-50 chance of making it to the ‘list.’ I remember having uncontrollable tears of joy when I made it to the list finally on 12th Mar 2017.
The final day
After six months of an unbearably long wait time, I made it to the top of the waitlist and was lucky enough to find an HLA match. The surgery day was like a bag of mixed emotions. Nervousness, excitement for a new life, fear regarding the outcome, and anticipation of the pain – all of these consumed my mind!
Life after the transplant
Recovering from the trauma of such a double heart/lung transplant was not easy. The physiotherapy, breathing exercises and baby steps were stressful. There were many nights where I was unable to sleep because of the pain from the surgical wounds and all the exercises, but the fear of not waking up at all still kept me going. My friends and family that were around me not only motivated me but seeing them around gave me new reasons to get through this every day. I resumed work about 5 months after my surgery and I feel every new day is an exciting challenge. I have begun to admire the support my work colleagues extended to me during this time of crisis. No doubt they say your colleagues are your extended family!
Today after 20 months from the day when the doctor told me I might live only 16-18 months, I can cycle 6 miles at a stretch or sprint for 2 miles and my joy knows no bounds. Not a day passes when I am not thankful for the greater good in this life. It is only when you are in the shoes of someone in need, that you appreciate the beauty of the charitable.
I am sharing this today in the hopes that my experience will inspire everyone who is healthy and fit enough, to pledging their organs for donation. It’s the best way to give back to this world even when you are gone. It truly is a life-changing gift.
I am forever thankful to my donor and his/her family for making the decision to do something noble that lets me breathe every day!
