Liver Transplant – my 2nd LIFE …

I am alive today because a Donor’s Parents decided to Donate All Organs of their son, a victim of a fatal road accident. With God’s grace I received his deceased liver on July 14, 2012 in Apollo Hospitals, Chennai.

In 1978, I sustained a serious injury to my thigh bone in a road accident that left my femur (left) completely crushed. I had to undergo a complex surgery which required blood transfusions and doctors believe that I got infected with Hepatitis C infection because of these transfusions.

I was working as an Engineer/Aircraft Maintenance Professional in an overseas company since 1990.  This infection was detected during a routine company medical check-up in 1995. Me and my family could not accept the recommended allopathic treatment for Hepatitis C in view of many uncertainties and serious side-effects related to its treatment. For the next 17 years, I travelled to India, 3-4 times a year to undergo various laboratory tests and scans, for consultations and to pursue other alternative system of medicine treatments – Homeopathic and/or Ayurvedic. In addition to these treatments, I was also following a restricted diet and leading a disciplined/regulated lifestyle. The tests and scans revealed that I had Cirrhosis of liver & my laboratory parameters were all abnormal. I also suffered from edema in legs, and blood with sneezing and stool. These frequent travels took its toll – physically, mentally and financially.

A CT scan done in March 2012 showed three tumors in the liver. Doctors told us in no uncertain terms that unless I get a new liver, chances of me making it more than a few months was very bleak. It was an absolute shock for the entire family.  I had not expected this to happen to me and so soon. Just thinking of ‘liver transplant’ and the questions that arouse– when, where, how and what other options do I have, all contributed to the darkest period of my life that lasted for 100 days – “waiting for a suitable donor”.

In April 2012, as advised by Dr. Ravi, I got admitted in Apollo Hospitals, Chennai where many other advanced laboratory tests, and a variety of scans were conducted to check my health status and to find out if liver transplantation was a feasible and viable option for me. After reviewing the lab tests and scan results, the doctors advised urgent liver transplant surgery.

I then registered with the ‘Chennai State Transplant Coordination Authority’ and my name was put on the long ‘waiting list’ of Apollo Hospitals, Chennai.

Waiting, Hoping, Wishing, Inquiring, Contacting, and Praying, … was virtually the daily routine. My health was fast deteriorating which was physically noticeable and was clearly evident in various laboratory reports and scans.  Time was running out, adding to the existing stress and anxiety.  Any transplant happening at the hospital used to make us think:

– When would I get a call from the hospital for the transplant

– Why was I not shortlisted for this surgery

– Where am I in the waiting list

– How critical my condition has become

– What are the sizes of the liver tumors

– How close am I to my last day ….

During this agonizing wait, I received FIVE calls from Apollo Hospital of a possible suitable donor being available.  Every time, I would get admitted in the hospital, once I even flew to Hyderabad with my family but always returned without receiving a transplant.  The reasons were:

– Immediate family members consented for Organ Donation but some distant relative intervened

– Liver was marginal and transplant would not have been so beneficial …

– Potential donor’s case was medico-legal and the police did not give the clearance …

Each return without the transplant being done added to our stress, pain and anxiety with questions looming in front – what and what next.

I was in constant touch with doctors who were reviewing my lab tests and scans and kept myself updated. It was very demanding and challenging to keep myself fit and ready for surgery because the call could come any day. I experienced severe gum swelling due to dental cavity infection- surgery was flagged ‘on-hold’ for two weeks in view of the infection. I was administered sensitive albumin serum, via intravenous drip, as this parameter had dropped to unsafe levels. As the size of the tumors in the liver had increased significantly since their detection in Mar 2012, TACE- (Trans Arterial Chemoembolization for liver cancer) was performed, to possibly gain a few extra days.

To ensure that we don’t miss out on single chance of donor availability (in view of flight schedules/delays in the process of travel from either Delhi or Abu Dhabi), we decided to camp in Chennai.  We rented a fully furnished 2 bedroom flat. I also purchased a second-hand car to eliminate the delays and possible infection while travelling in the most unreliable city radio cabs. We never had reasons to get medical insurance for ourselves, in view of the nature of my job.  All these added up to significant financial strain on our savings.

It was fate that my liver transplant was destined to take place on July 14, 2012, donated by the parents of a young boy (19 years old) following a fatal road accident.

I was pushed into the OT for a 12-14 hour long surgery, I woke up partially conscious in the ICU with large number of tubes running from neck, abdomen, hands, surrounded by a lot of gadgets and monitors, vein compressors on both the legs, and ventilator mask tightly covered to my face. In the ICU, two to three sisters were constantly busy, and doctors of various specialties visited me frequently. There used to be frequent long discussions amongst the doctors and nursing staff, outside the glass cubical of ICU regarding my reports, scans and records spread out on a tall table.  My whole abdomen was covered with tight 8-10 inches wide bandage.  Even today, almost 8 years after the transplant, the ICU scene is still etched in my memory and is very vivid.

On the second day in the ICU, a low dose of immunosuppressant was started. On the third day, the dose was increased which caused convulsions that left me with ‘out of the world’ almost unimaginable feelings of fear. My hands and legs were tied to the bed to prevent involuntary movements. The nursing staff and the doctors would rush in and out of ICU to handle this emergency. I underwent a lot of abnormal and a different kind of mental turbulence, watching myself collapse like this because I had not thought or imagined that there could be such kind of post-transplant complications. Luckily for me, the medical team treating me could manage and control these episodes within 24-36 hours.  But, for my family this was a nightmarish experience.

I had to be put on the ventilator twice as my blood parameters and liver function tests were not stabilizing. It was an awful experience when oral liquid diet was started as I felt extreme nausea and bloating. After 5-7 days of my stay in the ICU, walking for the first time was attempted with the help of 4 nursing staff, supporting me and carrying all the paraphernalia … drain bags, tubes, oxygen cylinder etc. I was in tears to see myself in such a frail and helpless condition. Often the cardiologist would visit me to review my heart function by looking at me ECG rand x-ray reports. These visits would plague me with fearful thoughts, “soon the doctors will declare that my liver function tests are normal, but the patient has succumbed to heart failure”.

Normally the patients are discharged from the ICU within 5-6 days post liver transplant surgery and are advised to go home (specially prepared for a liver transplant patient) rather than shift to the ward to avoid the risk of infection. But in view of the number of serious complications that I had developed after my surgery, I was discharged after 12 days from the ICU. At one point, I had even developed ICU sickness and wanted to run away from the ICU.

Home ICU …

One room in a two-bedroom flat was converted into an ICU after fumigation with utmost attention given to cleanliness and visitors were completely prohibited.  Next one month at home was rather tough and painful with daily blood and other samples being drawn, daily wound dressing, physiotherapy instituted when even sitting and turning was so challenging. Oral medicines were given in bulk – the number sometimes close to 30.

Gradually I started walking, the stitches were removed, started having daily bath and dietary changes were introduced keeping in line with the diet of a post-transplant liver recipient. Every 3-5 days, I had to go to the hospital for a follow-up. My wife and daughters had a hard time managing & keeping my routine that included maintaining strict hygiene, dietary restrictions, following medicine protocol, regular testing and coordinating with doctors for my follow-up.

75 days after my surgery, once the doctors were sure that I was making satisfactory recovery, I was permitted to leave for Abu Dhabi. We were given a lot of verbal instructions, a detailed medical prescription, diet restrictions, schedule of lab tests, a routine of physical exercises, and follow up.  We were also advised under which conditions we must contact the doctors immediately.  I consider myself very lucky that within the validity of my resident visa (180 days), I with my wife landed in Abu Dhabi, and we thanked the Almighty for His finest blessings that my transplant was a success.

In the beginning, I was not sure whether I would be able to perform my normal field and training functions in my company, where I was employed.  Questions like how I will manage to keep myself infection free (in view of the immunosuppressant which are still continuing) and follow rest, diet and mandatory exercises as advised.  But gradually, with the support of my Company Directors and my family, things started to settle down sooner than expected. 

We used to visit Chennai for a six monthly, and a yearly check-up and for review.  On completion of one year of my liver transplantation, I underwent incisional hernia repair that had developed post-surgery.

We solemnized the wedding of our 2nd daughter with gusto in Feb 2014. I am enjoying every day of my 2nd life and feeling blessed to be given a second lease of life, due to the exceptional, unconditional and magnanimous gesture of one donor family who in their moment of grief decided to donate the organs of their son thereby giving me and many others “the Gift of Life”. Getting a new liver, having successfully undergone the surgery with all its good and not so good moments and still be able to maintain normal good health is NOTHING BUT GOD’s blessings.

We returned to India, post my retirement in 2015.  Having received a Gift of Life, me and my wife felt highly motivated to contribute to the cause of organ donation.  With this in mind, we attended, “Angles of Change” – Volunteers for Organ Donation Programme conducted by MOHAN Foundation in the Foundations office in Gurugram in 2016. Since then we are actively volunteering our TIME, Effort and Energy to promote this cause.  Till date, we have motivated hundreds of individuals to pledge for organ donation and get their Donor Cards.  We have also guided and supported, close to 30 patients suffering from end-stage organ failure, by sharing our experience, and helping them to decide to go in for life-saving organ transplant surgery. 

Mr Naval Kishore Aggarwal

Thoughts on my 3rd Transplantversary

By Shreya Siddanagowder, Bilateral Hand Transplant recipient

9th August, 2020

The toughest thing in the world is to see yourself beyond what other people think about you; but if you are able to do it then it’s the most beautiful thing you will ever experience.

Four years ago, I was lying on a hospital bed with both my forearms amputated and my stumps, bandaged. My entire right leg was in a cast, my abdomen was filled with bruises and abrasions but my heart ached way more than my injured body.  “People like Shreya are so scary to look at”, remarked a visitor unsparingly. That sentence stung me and for the first time, I felt inadequate.

It has been 3 years since my hand transplant and I don’t feel inadequate anymore. Losing hands was supposed to be a permanent loss, but it was not so in my case. I can even hold a 30 second plank. It feels amazing to see that my transplanted hands can take my body weight and I still have metal implants in my arms! I have even written my semester exams with my transplanted hand. This was an unexpected achievement by any hand transplant recipient. When I had decided to embark on this journey of hand transplant, I did not know to what extent my transplant would be successful. Hand transplants are relatively new, rare and the advancement is still being understood. As the level of transplantation (above elbow in my case) was higher, I needed longer period of rehabilitation, tremendous patience and commitment.

It has literally taken blood, sweat, tears, pain and countless hours of therapy for my transplant to become successful, but all that has been totally worth it. It is liberating to be independent again. Your body can tolerate almost anything; it’s your mind that you have to convince. People always focus on what is going on below the neck so much that they often forget what is above. It is always mind over body. This was possible because of my donor and his parents, who decided to donate their son’s organs during their grief. He is still alive through 7 people, including me. They have given me a second chance in life and I am going to live it the best I can, for as long as I can.

‘’He who has a why to live can bear almost any how” – Friedrich Nietzsche.

This quote has resonated with me and I would always say this to myself on the days when I felt dejected and demotivated. Today, without any doubt I can say that I love myself because, I am mentally stronger and tougher and no accident could take away my will power, grit and determination. However bad your current situation may be, life eventually gets better and trust me when I say that because this is coming from a girl who, a few years back, was lying on a hospital bed without forearms; but today she has hands and is independent again. The last three years did give me a little perspective and the courage to see myself beyond what people thought about me.

And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in” – Haruki Murakami