Hand Transplant Recipient (above elbow) who can now write exams and cook by herself
Musings of a hand transplant recipient
I was fumbling with my prosthetic hand, trying unsuccessfully to brush my teeth. After dropping my brush for the ninth time in my failed attempts with my unwieldy prosthetic arms, I cried out in frustration, “It would have been better if I had died in the bus accident.” I could see the hurt and pain on my mother’s face hearing my bitter remark but all she quietly said was, “Being alive is truly a blessing and honestly, I’ll always be grateful to see my daughter alive, despite the fact that she lost both her forearms in the accident.”
My mother has an unparalleled sense of optimism and it was this very optimism of hers that made me believe in the possibility that one day I will get a bilateral hand transplant and brush my teeth without dropping my brush umpteen number of times. I decided to undergo hand transplant as my prosthetic hands were a huge disappointment and I could not picture myself using them for the rest of my life.
Almost one year after the accident, I finally underwent a bilateral above elbow hand transplantation. Even though I was the first female in the world to receive male hands, I had no apprehensions at all, as all I wanted was to have hands again, to be independent again and to feel complete again. Yes, I had to undergo intensive rehabilitation to gain functionality in my new hands and I had to make the commitment of taking immunosuppressants for the rest of my life but today it all feels worth it.
To be honest, there have been a few instances during therapy when I used to feel dejected and demotivated when I could not get the desired results. In retrospect, those were the days that challenged me and pushed me to work harder. Those were the times that helped me realise how resilient I am.
It has been three years since I received the gift of new arms. Today, I not only can brush my teeth without any fiascos, I am able to do most of my day to day activities without anybody’s help. I can bathe, dress myself, eat, cook and I have written all my semester exams by myself. In fact, my handwriting matches my previous handwriting. This clearly shows that our body can tolerate almost anything, it is the mind that we have to convince.
Having a transplant can truly be a life changing experience. Personally, it has taught me patience, courage, determination and resilience. All of this has been possible due to the donation of those hands by a family that was brave at the time of their loss and could look beyond their grief to help someone else. This has given me a second shot at life.
Seeing my hands for the first time after the surgery is the best moment I’ve ever experienced in the 22 years of my life. Yes, undergoing a transplant is messy, complicated, and frustrating but the post-transplant experience is amazing, wonderful and above everything else it feels epic as I get to see my miracle every day.
Kidney Transplant Recipient who has decided to lead a full life
Life is an incredible adventure
Being a creative person, I have always loved to write, sing, play the guitar and compose songs. I have felt equally passionate about sports and adventure and in general, strongly believe in living life to the fullest.
In 2006, when I was studying to complete graduation, life took an unexpected turn as I was diagnosed with kidney failure. I had always led a healthy and ailment-free life and therefore it came as a huge shock to me and my family. I had to quit my MBA studies halfway as my health kept deteriorating.
Unable to bear the pain of watching her dauntless and spirited brother’s life getting derailed and spirits dampened, my beloved sister, Chhaya willed to donate her kidney in August 2007. The transplant took place in KEM Hospital (a Government hospital in Mumbai).
She gifted me a second chance at life and I decided that come what may, this new life had to become more meaningful to me, than before. I started pursuing writing and completed courses in mass communication, journalism, radio jockeying and script writing. Presently, I work for an ad agency as a creative writer.
As a living tribute to my sister, in 2012, I founded an NGO in her name, called ‘Chhaya Kidney Foundation’.
Around this time, I met someone incredibly special – Aarti, also a kidney recipient, who had received the gift of life from her mother. Both of us had been working closely on some campaigns for promoting organ donation and soon, the friendship turned into a fascinating, ‘Jab we Met’, kind of a love story. With the blessings of our families, we decided to get married, thereby becoming the First Kidney Transplant couple in the world. This record is held in the Limca Book of records.
I would like to call myself as an ardent fitness enthusiast and I make sure that my daily routines include playing badminton, exercises and running. Since 2012, every year, I have participated in the National Transplant Games and have won Gold, thrice. In 2019, I had the honour of representing India at World Transplant Games, 2019, at Newcastle, UK. In 2019, I challenged myself further by scaling the ‘Kalasubai Shikhar’, considered as Maharashtra’s Mount Everest.
I have entirely dedicated himself to promoting organ donation, including a few songs that were composed and sung by me, while playing the guitar. I have also written a few books including ‘SALAAM ZINDAGI’, about kidney recipients, ‘सैराट नावाचं वादळ’ (criticism of the Marathi movie ‘Sairaat’, which was published by the movie’s director). I am now writing a book on kidney recipients who have completed more than 20, 30 and 40 years of transplant.
I recently celebrated 13 years of kidney transplant in August 2020.
“मै जिंदगी का साथ निभाता चला गया, हर फिक्र को धुवे में उडाता चला गया”
(I just kept going along with life, kept making every worry disappear into thin air like smoke). This is my favourite song and also my guiding philosophy in life”
Kidney Transplant Recipient after 17 long years on dialysis
A day without laughter is a day wasted
My tryst with kidney disease began in 2001 when I was diagnosed with MPGN (Membranoproliferative Glomerulonephritis). Having completed an MBA in marketing from one of the top institutes in Mumbai, I had risen quickly to an important role in my organization. I lost this job overnight, in 2002 after I started dialysis.
I then decided to start my own advertising agency, which ran well for 3-4 years. Due to some erroneous business decisions, it ran into losses and I had to start from scratch. I joined a Digital Agency at a beginner level as that was the best job that came my way. I worked hard and won accolades for the work. I soon rose to be in the strategy function and started reporting directly to the MD of the company.
I managed all this while on late night dialysis, after putting in a full day’s work. Looking back, despite the constraints, one might say, I did well and bagged many prestigious accounts for my organisation. My work at the company has won a few international awards in Digital and Internet Marketing.
For me, being surrounded by nature and going on hiking were always a passion. In 2008 I founded V Hikerz which is presently one of the more active hiking groups in Mumbai, specializing in the Sahyadris. Photography was the other passion, which I pursued and have been very well appreciated for.
By 2013, I had hands on experience in all areas of Digital Marketing Strategy and was well known in the industry. I then decided to venture out by myself and started consulting smaller and mid-sized corporates for their Digital Marketing Requirements.
Juggling a demanding career, my love for hiking, nature photography and my haemodialysis was most definitely tough, but I hung in there and managed to strike a balance for 17 long years.
In June 2019, I finally saw the light at the end of the tunnel. I underwent an ABO incompatible kidney transplant, wherein my mother donated a kidney and blessed me a renewed lease of life.
I am now associated myself with Amar Gandhi Foundation, managed by my nephrologists and I have been driving the activities of the Foundation.
I was very well appreciated for my contribution to helping patients during the COVID Crisis. I single-handedly managed to create a comprehensive set of transport options for patients (not only kidney) to reach hospitals during the lock down. This was done for many cities all over India and managed only by using phone and email.
I have continued peer counselling for others with kidney failure, thus making a huge difference to lives of several kidney patients, all over.
Heart Transplant Recipient who now runs her own company and puts her heart into her work
How I cheated death..
I was diagnosed with congenital cardiomyopathy when I was 16 years old. As a child, I rarely fell ill even with common childhood ailments, and here I was, faced with something that seemed to have no known cure. To say that I was terrified would be putting it mildly.
My parents and I were clutching on to the hope that the slow rate of progression of my myopathy might mean that I would remain symptom free until I reached my forties at least. The fact that I was leading a relatively normal life, even months after the doctors had offered such a grim prognosis, lulled me and my family further into a sense of security.
This was shattered on the evening of December 18, 2012, when I suffered a stroke due to the impaired functioning of my heart. Unable to speak, and with my right side paralysed, the gravity of my illness was brought home to us with sickening force. Although I recovered almost miraculously from the stroke, with only a minimal deficit in the functioning of the fingers of my right hand and right toes, the horror of that episode left me mentally shattered. It took me many months to regain some semblance of confidence and put the fears of another stroke occurring behind me.
After the stroke, my condition steadily declined. I suffered from breathlessness, fatigue and severe headaches. My heart functioned at only 25% of its normal capacity. It all came to a head on the 16th Oct, 2013, when I collapsed and had to be rushed to Holy Family Hospital, Mumbai. I had no pulse, no blood pressure and no heartbeat!
The cardiac team under Dr Brian Pinto battled heroically to revive me even when all hope seemed lost, and after 45 minutes, they managed to get my heart beating again. Miraculously, even though my brain had been deprived of oxygen for so long, I showed no deficit after this episode. As per Dr Brian Pinto, my heart was deteriorating rapidly, and my only chance 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.
A preliminary meeting with Dr. Balakrishnan filled us with hope. Here was a doctor who inspired trust and confidence. Dr. Suresh Rao, with his kind eyes and gentle demeanor did much to reassure us and allay our fears. In an alien city, under the most trying of circumstances, the hospital became our home, and the entire cardiac team our family. Not for an instance did we feel alone or hopeless.
On the morning of 16th June 2014, God worked his miracle. A heart that was a match for me had become available. In the midst of our joy, we sent up a prayer for the family of the donor for their incredible bravery and generosity in the midst of their grief.
The operation lasted for 6 hours, and at precisely 10.30 pm, the new heart started beating in my chest.
Our hearts are filled with gratitude to the wonderful doctors who held our hand throughout this difficult journey, and who showed us time and again that they were not just men of medicine doing their jobs, but kind, empathetic and selfless human beings above all else. Hvovi is living a healthy and active life. She trained herself in Transplant Coordination from MOHAN Foundation and works towards organ donation advocacy. Hvovi has also co-founded a company that counsels and offers solutions to students aspiring to study abroad. Her mother Armaity says, “Hvovi loves her work and has become a workaholic. She puts in upto 10 hours of work on many days. But she loves what she is doing and enjoys her weekends with friends and family. We are just grateful for all this”.
Coping with Kidney disease – on Peritoneal Dialysis
My new normal: Life on Peritoneal Dialysis
“The first step towards getting somewhere is to decide you’re not going to stay where you are.” – JP Morgan
When one is dealing with a chronic disease, one learns to celebrate small victories and every setback helps you become a stronger person.
After multiple vascular access failures, I had serious apprehensions for next access. A well-wisher suggested that I try peritoneal dialysis. I was skeptical, but since I had no real alternatives, I decided to explore this option.
I decided to meet Dr. Georgi Abraham and his team in Chennai. After they found me fit, I was operated upon and in a couple of weeks, my dialysis started. I got excellent training by a peritoneal dialysis technologist and I was ready to go!
The training included everything from sterilising the peritoneal dialysis space, washing of hands, cleaning the catheter site, dressing to giving oneself injections. Only after the team is convinced that the patient has understood the process clearly, that he/she is allowed to do the peritoneal dialysis independently.
Today, I have completed more than 6 months on CAPD (Continuous ambulatory peritoneal dialysis). I do three exchanges a day and try and lead an active life.
I highly recommend peritoneal dialysis as I have noticed positive changes ever since I started it. I have fewer blood pressure crashes, my parameters are stable and I have less fluid and dietary restrictions. The best part about peritoneal dialyis is the independence it gives and the confidence it instils in you about taking your health and care in your own hands.
During these uncertain COVID times, Peritoneal Dialysis comes as a boon, as you can do the dialysis at home. If a person is unwell, the caretaker can do the dialysis for them. Discussing with your physician and exploring the option of peritoneal dialysis seems to be a great way to resolve the issues of shortage of dialysis beds, infrequent dialysis and frequent hospital visitations.