Hands On!

Prologue
Sent to my mother from Sachin’s momvia text message
“Sachin -Not Out” (originally written by Sachin’s doctor)

A young and handsome boy called SACHIN was brought to our Emergency Room in an unconscious state, painted with blood all over his face and body, caused by a motorbike accident. With not much details of him, we started treating him immediately. He was given medicines to arrest the bleeding and was shifted for a full body CT scan. His CT scan showed severe brain injury which was irreversible.

His family members arrived. The toughest part of treating any patient is breaking the sad news to the family. We explained to Sachin’s parents about his critical condition and his poor chances of survival. The only option was to carry out a brain surgery to stop the bleeding in his brain. It was the only option against death. His family was extremely understanding and cooperative. Our only aim was to save Sachin, and his family was ready to support us in every possible way.

The news spread like fire that a young boy is admitted who is fighting for his life. Everyone in the hospital, including the staff and other patients, prayed for him. He underwent a brain surgery which lasted for 4 hours, the surgeon tried his best, but the result could be known only after two days. Normally any person with such a severe brain damage can only manage 24hours of life, but Sachin was a champ. He managed six days in ICU. He was kept on artificial breathing support.

On the 7th morning, an extremely sad news was awaiting us. His brain functioning had stopped completely, which is termed as brain death. It was a heart wrenching diagnosis and we knew that Champ had given up in the fight against death. We now had to confirm the brain death for which Sachin had to undergo the apnea test. It was tough for us to break the news of Sachin’s brain death to his family members. His family members understood the condition and the prognosis. His apnea test confirmed that he was brain dead, and the chance of his survival was zero percent. His other organs were functioning as he was still on ventilator.

His family had two options left. Either to wait for the other organs to die and carry on with the customary rituals, or to donate his organs to give a new lease of life to other people, and this would make Sachin a great champion.

The options were well explained to his family and they decided to donate his organs. It’s one of the wisest and toughest decisions one can make. Organ donation is one of the wisest donation one can do. Many people don’t favor organ donation as they consider it malpractice. But that’s not the case, there is a government organization to decide which organ goes where and these operations are transparent. Organs are strictly allotted as per the waiting list. Almost 18 people get a new lease of life because of one person’s donation, almost all organs can be donated as per the need.

We informed the organization about the organ donation and a team was formed to carry out the apnea test twice with a gap of 6hours in between. The apnea test is carried out twice because it is a government requirement to actually confirm brain death. On the eighth morning Sachin was taken to the operation theatre to retrieve his organs.
Two kidneys, Liver, and two corneas were donated.Both hands were donated to a young girl (hand transplantation is one of a kind in the world and it was for the first time in the world that a girl had received male hands).
Sachin was not out, he continues to live through six other people, and he’ll live in our hearts forever. Organ donation is the best donation one can ever do.

My Story
The above article was written by a doctor who was involved in Sachin’s treatment.

I am the girl who received Sachin’s hands. Grateful.This is what I feel everytime I look at my hands, which first belonged to Sachin. Today, even 17months post-transplant,not a day goes by without me thinking about Sachin and his parents. Sachin’s parents are no less than God’s blessing to my family because even during their grief, they thought about the other sick people and showed immense courage by donating their son’s organs.

The grief of losing such a young son is definitely an unfathomable emotion, but when I met his mother, she held my hands, Sachin’s hands. Tears trickled down her cheeks as she uttered,“My Sachin”. The fact that she could touch and feel my hands gave her some satisfaction that her son is still alive, and she said that they had willingly and whole heartedly donated his organs. She said she had lost her son, but she considered me as her own daughter and wanted me to live my life with hands.

Sachin’s parents will always be there in my prayers. Sachin’s hands, which are my hands now, gave me a second shot at life. And he truly is “Sachin Not Out” because he will continue to live through me, and through a few other people as well.

Abled to Differently-Abled

In 2016, I was this 18-year old engineering student who was fiercely independent, high spirited, and boisterous in her ways. I had dreams and aspirations like any other young engineering student had.

On 28th September 2016, within a few seconds, my life changed forever. I was traveling back to my college in a Volvo bus after a short holiday with my parents in Pune. At around 4.30 am, the driver’s rash and irresponsible driving led to the bus overturning. It was dragged for around 100 meters. In this nearly fatal accident, both my forearms got caught between the shattered window and the rugged road, and I sustained agonizing and horrendous crush injuries on both my hands.

My right hand was completely crushed below the elbow, and my left hand was dangling through some muscles and skin. I was oblivious to the condition of my hands as my head was throbbing and there was blood smeared all over me. The smell of blood was nauseating, and that smell would haunt me in the coming months.

I was taken to a primary health center, and then to Kasturba Hospital in Manipal. I was directly wheeled in to the operation theatre from the trauma center. When I finally regained my consciousness, I was in the ICU. A few of my relatives were already there,but I still had no idea about my hands. I was desperate to see my parents,and almost everyone who came to meet me had desolate faces and didn’t utter a single word. My parents arrived after some time and my mother was courageous enough to tell me that everything will be okay. I was covered completely with bedspreads so I couldn’t see what had actually happened to me.

Next day, when two nurses came to give me a sponge bath,is when I saw my right hand. It was heavily bandaged onlyup to the elbow level. I couldn’t believe my eyes. It felt as if someone had turned a knife in my stomach. My left hand was also bandaged right from my shoulder till my knuckles. All of my five left fingers were intact but I couldn’t feel them. I was blank for a few minutes. But then I thought, ‘okay I’ve lost my dominant hand, but I still have one hand and both my legs are also there so I will get out of all this soon’. Little did I know that another storm was on its way.

That same evening, I developed a high fever. My left fingers had turned blue. Blood circulation had almost stopped, and my left hand was infected. When my fever didn’t come down, I was rushed to the operation theatre. I had no idea what was going on.

The next day when I opened my eyes, I was in the ICU already and my parents were standing beside my bed. My mother said, “Whatever we are about to tell you, I want you to know that your father and I will always be there for you, and we will support you in every possible way. Both your arms have been amputated just a few inches below the elbows.” Those words felt like a hard slap right on my face. Yes, I did know about my right arm, but the loss of my left arm was extremely shocking. I just couldn’t digest the reality. I couldn’t cry either because that’s how shocked I was. I always thought that you could work your way out of any problem, but the loss of both my handschallenged that notion.

Over the next few days, many relatives and friends came to visit, but they were too stunned to say anything. After one week in ICU, I was shifted to a private ward. I could barely walk because of the various injuries, and my right leg was bandaged from right below my hip till my ankle.

That’s when a lot of negative comments started pouring in. People pitied my parents as I was their only child. As if having a sibling would have made the situation better. A few went to even greater lengths by suggestingmy parents try for another child. I was appalled by such type of negativity that came from people who I thought were my well-wishers.

Over the next few days, I realized the gravity of my situation as I couldn’t do the most basic tasks, such as wiping my nose, feeding myself or even wiping my butt. I couldn’t even sit by myself. I had to rely on my mother to accomplish my every little activity and need. I’m so grateful to have had my mother by my side during that time.

A few days later, a senior resident came to dress my stumps. As the gauze roll unraveled, instead of my forearms, I saw my stumps for the first time.

At that point I felt that I was condemned to a life I would never choose. Tears started rolling down my cheeks for the first time since the accident. It was the lowest point of my life. I couldn’t picture my future without hands. My parents too had tears in their eyes. I told them to leave me alone as all I could see was despair and wretchedness. My mother said that she could bear to see me without hands, but she couldn’t bear to live without me. With or without hands – she would always love me. Only parents can love their child unconditionally and expect nothing in return.

I was discharged on the day of Diwali after one month in the hospital. At the airport,I couldn’t see the faces of people, all I could see was their hands. For the first time in my life, I actually felt a deep longing for something so basic, something that everyone had but I didn’t – Hands.

Seeing my stumps every morning when I woke up was agonizing. The scars on my body always reminded me of the accident. I just couldn’t picture myself amounting to something ever. My brain couldn’t shut down the negativity.
I took some time to get adjusted to my body without forearms. It took me two months to look at myself in the mirror. And trust me, seeing myself that way was just the beginning of some of the toughest things I had to do. I decided that giving up on myself and indulging in self-pity was not an optionanymore. The best part was that my parents refused to treat me any less of a person even when I didn’t have hands. And this was the turning point of my life.

Hand Transplant? A Very Rare Surgery

I started undergoing physical therapy for my weak legs and shoulders. Slowly, I started walking without anybody’s support. Time did alleviate my physical pain, but I had to take charge of my mental health. I decided to toughen up because wallowing in self-pity would rot me from inside. I had lost my hands, butI had not lost my will and spirit to live. I trained my toes to operate my phone, laptop, TV,remote, and kindle too. Similarly, I trained my stumps to flip pages of books and newspapers. Little things like these kept me going.

hand on

Obviously, nothing in my 18 years had prepared me to deal with such a situation. But my parents were hell bent on getting my life back on track, and ensuring that I led an independent life. My mother always googled articles and information related to prosthetic hands and a bilateral hand transplantation. For me, in the longer run, hand transplantation seemed to be the best option.

Till 2016, only 3 successful bilateral hand transplants had been carried out in Amrita hospital, Kochi, under the leadership of Dr. SubramaniaIyer. In December 2016, I met Dr. Iyer to consult about the hand transplant procedure. Dr. Iyer told me that there should be a gap of atleast 8-10months between the accident and the transplantfor the body to heal completely. He took me through the pros and cons of undergoing the transplant. In the meanwhile, he advised me to use prosthetic hands for a few months.

The Prosthetic Hands Experiment

The prospect of using prosthetic handsmade me cry more than the time I had lost my hands. For me, accepting the loss of forearms was easier than accepting prostheses.
But my parents convinced me to give them a try. I broke down after wearing them for the first time. Though they provided some assistance, they were heavy, uncomfortable, manly,had less functional strength, and they had hooks and belts and had no feminine feature whatsoever. I was told that I could do 60% of my daily activities, but I never reached even 6%. Not very useful.

Then I tried the myo-electric prosthesis. In this type of prosthesis, a person uses their muscles to stimulate the electrodes, which in turn perform the opening and closing function of the hands. The only positive thing was appearance but, since they were battery operated,I couldn’t put them in water. So,I could never carry out any personal hygiene related activities.

Bilateral amputees face unique challenges with basic grooming, self-care and activities of daily living contributing to significant disability and dependence. I personally feel that prosthetic hand is of more use to a unilateral amputee.

This would mean that I would have to depend on my mom or someone for the rest of my life. This was not ok with me.I always looked at the bright side, but I had my own share of frustration and low days. There would be days when I couldn’t see light at the end of the tunnel, when I doubted my own inner strength and my ability to overcome my disability. There were a few times when I cried my heart out in front of my parents. I shared my deepest fears and my anxiety with them. They patiently listened to me and told me that they believed in me. They saw hope in me even on the days I couldn’t see any hope.

The disappointment of prosthetic hands only strengthened my determination and will power to opt for a bilateral hand transplant. My decision of undergoing hand transplantation was surrounded by demoralizing words and odious attitude of many people (including doctors) who felt that such a surgery was complex in nature and there was a high probability of it failing. The so-called well-wishers believed that I’d spend the rest of my life being confined to my room. A few people have actually told me that leading my life with ‘lakdi ke haath’ is the only solution for my inadequacy. But no amount of discouragement or harsh words could deter me from my decision.

Transplant

In June 2017, along with my parents, I visited Amrita hospital. There were counseling sessions with doctors and a transplant counselor. I agreed to take immunosuppressants for the rest of my life (which is a must in any organ transplantation) and I also agreed to stay in Kochi for 2 years after the surgery to undergo rigorous hand therapy. Based on the positive test results and counseling sessions, I was declared eligible to undergo hand transplant surgery.

I visited Kochi in August 2017 to meet Dr. Iyer and to register my name on the Kerala organ donation site. By sheer luck, a suitable donor match on the day of registration itself! This was a miracle for me. Our prayers were heard!

The reason it was a big surprise was that, in general, people are ready to donate internal organs of their loved ones upon their death, butthey are reluctant to donate hands because they are visible external organs. Before the transplant, Dr. Iyer asked me whether I had any qualms about the new hands I was about to get. They were male hands. Did I have a problem? No way!!I needed hands, I was lucky to be getting them and my second shot at life.
Finally, on 9th August 2017, after almost 14 hours of surgery, I became the first person in Asia to receive a bilateral above-elbow hand transplant, and the first girl to receive male hands in the entire world!

hand on

With Dr. Iyer& my entire team of saviors

On the early morning of 10th August, almost one year after my accident, I felt complete again. I cannot express the happiness I felt when I saw my hands for the first time,or express the amount of gratitude I felt for Sachin (my donor) and his parents. They will always be there in my prayers.

My new hands

My new hands

There were so many other setbacks along the way, but I managed to turn those setbacks into a comeback through grit, determination and perseverance. At times it does seem like you’ve been unfairly heaped with adversity, but the trick is to operate as if you have every advantage in the world. You will always have doubters and a colossal collection of critics and naysayers who will shout ‘I told you so’ at every little mistake you commit. The noise will never go away, but only you can figure out a way to push forward with your goals and lean on people who believe in you.

Before & After

Before & After

Post-transplant – Joys & Difficulties

The first three months after the transplant were a breeze, though I had to wear splints and slings to support the weight of my new hands, which was something like this.

hand on

But I was extremely happy because I had hands… they were everything that I had hoped, yearned and longed for. That’s why no amount of neck and shoulder pain caused by the slings could make me unhappy. But, after 3 months, I had to face a few complications which tested my resolve.

Human body tends to reject transplanted organs as they are a foreign body. To avoid rejection, any solid organ transplantation recipient is given immunosuppressant drugs for the rest of his/her life. As anticipated, I had to face recurring rejections for a few consecutive weeks, which eventually subsided as I was given extra doses of steroids. The above picture is from one of the rejection episodes I faced and methylprednisolone (steroid) is being administered through IV.

As I was taking immunosuppressant drugs, I contracted infections like CMV, liver fungal infection and PTLD. They are a cause for concern and can be fatal if proper medical care is not given. CMV caused a lot of ulcers in my colon, which led to incessant vomiting and severe diarrhea for two months.

I got PTLD (post-transplant lymphoproliferative disorder) which is a disease that causes the cells of the lymphatic system to grow excessively and may partly be attributed to the higher doses of immunosuppressants. During my treatment, there were times when doctors told me that if the situation ever came down to my life or my hands, they would have to amputate my hands again to save my life.

It took me 3 months to be cleared of PTLD. At times,I felt I couldn’t take it anymore and wanted to give up. But my mother was a constant source of motivation. She has an unparalleled sense of determination and courage that has twice brought me back from beyond the grave. It was equally tough for my father. After working for 10-11 hours a day, he would come back to an empty house (I, along with mom, stayed in Kochi for almost 15months). When my health had hit rock bottom, he used to come to Kochi once in 2 weeks.

Present & Future

hand on

The last two and a half years have been really tough for my parents as I am their only child, but even today they encourage me to pursue my dreams and follow my heart. It’s a blessing to have such parents. I have transformed more as an individual since the accident than I had ever in my entire life before the accident. This life altering accident and transplantation has made me believe in the power of will power and determination.This accident couldn’t take away my will power, grit and determination, and these are the qualities that helped me turn my biggest setback into an even greater comeback. It also became quite clear to me as I was sick for a long time that the love, support and concern from family and friends, is of utmost importance.

hand on

I don’t have words to describe how grateful I am for the unceasing work that doctors, therapists, nurses and other medical staff put in just so that I could be independent.They make the world a better place and I’m forever indebted to them.

hand on

It has been almost 3 years since my transplant and I can do about 85% of my day to day work, which includes eating, dressing up, and all personal hygiene related activities. I can even write! In fact, I have written all semester papers with my own hands, and my present handwriting matches my previous handwriting! This makes me believe that our bodies can tolerate almost anything, it’s our minds that we have to convince.”

5 Comments

  1. Anmol Singh · July 2, 2020 Reply

    Its a brilliant job done by the community . I wish my body could alos be used in such a way..

  2. Santhanam Rajagopalan · July 3, 2020 Reply

    Simply superb, salute to the courage and patience to bear situation salute wishing u good luck stay safe

  3. Kannika Jain · July 27, 2020 Reply

    Dear Shreya, god bless you & ur parents, doctors, caretakers & esp. ur donor & his family.
    You are a blessed one.

  4. Sunetra · August 16, 2020 Reply

    You are an epitome of willpower and determination Shreya!! Best wishes to you and heartfelt salute to Sachin’s exemplary parents

  5. Greeshm Mariya · August 16, 2020 Reply

    Your story is a real inspiration to many. Iam so proud of your parents and sachin’s family.

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