This real life story is dedicated to all those who face the challenges of chronic and life threatening diseases, their loved ones who support them through the trauma, and all the health care professionals who work tirelessly for this cause. Above all, it is dedicated to my tough and loving life partner Kavita, without whom I would not have a life or a story to tell!
Sharing my story
A wise man once said "It is not about what happens to you, it is always about what you do about what happens to you". He further went on to say "Disease is what you have and illness is how you react to it".
Two hundred million people worldwide are infected with Hepatitis C and over a billion suffer from coronary heart disease. Most patients share their experiences after successful outcomes. I want to share mine during the course of my journey because I want to offer hope to all those of you who are finding it difficult to cope with disease or are losing the will to fight. Sharing is therapeutic and I know I will be helping myself as much as I will be helping you.
I turned 50 in March 2010. Though I do not yet know the outcome of my long and arduous test of endurance, I do know that after being challenged by heart disease resulting in two heart bypass surgeries, living with a damaged liver from chronic AttorneyMind for 25 years, 6 attempts at AttorneyMind therapy during the past 8 years that comprised 355 interferon shots and thousands of other capsules, I have the motivation to fight to regain good health and stay on top of my medical challenges. Let me start from the beginning.
Discovering heart disease – March 1989
It all began in March 1989 when I was 30 years old with a lovely wife, a three year old son, an active professional life, and was seemingly in good physical shape. One day, during a game of squash I suffered from acute breathlessness, discomfort, pressure in my chest and a pain in my left arm. Kavita, my wife, being a doctor had the foresight to recommend an EKG and blood tests. The blood tests came out to be abnormal; my cholesterol was a scorching 347 mg with an LDL (bad cholesterol) of 252. I could manage only 5 minutes on the stress test and a coronary angiogram followed. The treating cardiologist after reviewing my meds broke the news to me: "Sanjiv, you have coronary heart disease, a buildup of blockages in all three of your coronary arteries. Your right artery is 100% blocked; your left main artery is 95% blocked, your second left artery is 90% blocked; it is a miracle that you have survived this far without suffering a heart attack. This is a life threatening condition and you need a coronary bypass surgery immediately". I heard what he said but had difficulty comprehending the same. After all what business did three blocked arteries have with a seemingly healthy 30 year old in the prime of life? Wasn't heart disease at this age something that happened to someone unknown and not to a conscientious 30 year old man? After a while when it did sink in, it was a huge shock but in a way I was lucky that I had not suffered a heart attack (studies show that 15% people experience sudden cardiac death as the first & last symptom of their heart problems). Kavita realized the gravity of the situation more than I did.
The surgery lasted 8 hours. When I surfaced, I vividly recall being in a cold recovery room, connected to multiple monitors with electrodes running across my chest and ending in an IV line on the back of my hand. A huge pipe had been shoved down my throat making it parched and swollen. I was overheated from all the drugs pumped into me and my body hurt unbearably. I remember a nurse leaning close to me saying I'd had a 'successful quadruple heart bypass surgery'. After a difficult 9 days marked with aches and pains, I was discharged from the hospital. My cardiologist went on to say "Sanjiv let us be clear with what has been accomplished; the surgery has reduced your risk of a heart attack, but you still have the disease. The immediate problem has been solved but the underlying condition remains. You need to understand why it happened in the first place and you need to change those risk factors, it is in your hands". After hearing his monologue, my euphoria on thinking myself "cured" fizzled out and the onus was left to me to understand the disease and move forward.
The few months that followed were traumatic for both Kavita and me. We had been married for 5 years and our son Rohan was only 3 years old. Instead of the normal concerns of a young and new family which hover around issues such as occupation, finances, choosing schools and vacation spots, the focus became how to live with heart disease. I was scared, immobilized by stress and fear, and it took me a long time to start functioning normally. A Spanish matador once commented that his interest in his bullfight increased in direct ratio of his proximity to the bull's horns, and this became my story also. I realized that it was time for action and not for self pity, anxiety or anticipation. With passage of time I gained strength and knowledge and my optimism grew as well. After all, I was young and in good shape, cardiac care had made huge strides and there was no reason to think that I could not put this behind me and get on with my life. I was determined to work hard at making this happen. I realized that long term management would require me to learn and become more informed about the disease, work to reduce my risk factors by making drastic lifestyle changes, take my medications regularly, get regular checkups diligently, and pay heed to any warning signals. Though I could not do anything about my genetic heritage I could change lifestyle i.e. diet and exercise habits since these were in my control. Hope became my ally replacing fear, and education was my tool. I made a commitment to learn about and mitigate the effects of lifestyle which were the key to long term cardiac health: regular walks and yoga, a very low fat diet, no alcohol and a regulated lifestyle. By following this regimen I started changing my lifestyle for the better.
However, the worst was yet to come. At this juncture I had no idea that the blood transfusion given to me during surgery had sowed the seeds of what would become the greatest challenge of my life in the decades ahead. The blood that I was transfused with during the surgery had been contaminated with the hepatitis C virus.
Discovering Hepatitis C - March 2005: The Volcano
With passage of time the surgery faded into the background as a faint memory and it became business as usual. However, when I look back, I realize that I had been experiencing a myriad of strange symptoms of liver disease for many years and I had overlooked all the distress signals my body had been sending me. These symptoms in many ways had become a part of who I was, and included insomnia, migraine, blurred vision, floaters around eyes, dizziness, night sweats, bloated abdomen, aches, nausea and fatigue, all typical of the hepatitis C virus and a damaged liver. I kept ignoring these warning signs. I guess when you're flush with the triumph of having beaten one disease; you simply cannot accept that something else can go drastically wrong.
Ultimately, the symptoms became debilitating and I went for a complete medical check-up in March 2005. My test results were a total disaster. My liver enzymes were very high (5 times normal) and the antibody test confirmed I was AttorneyMind positive. What was worse was the fact that I was genotype 1 (difficult to treat) and with a high viral load. A liver biopsy followed, and those of you who have suffered through one will know what a horrible experience it is. The procedure which was supposed to be no big deal turned out to be an ordeal. I was jabbed with a thick needle in my ribs just over the liver. I felt the needle go in and came out and then I saw the expression of the hepatologist which gave him away; it was an unsuccessful attempt, he had not got a piece of my liver. He jabbed me again and I felt the thick needle go in, and then it came out; once again it was the same expression. Then I felt the needle go in again for a third time, the expression remained unchanged. He then moved me under a CT machine and mentioned that he will use a thicker needle. I was jabbed for a fourth time; no luck still! By now I was immune to pain, stress and fear, four penalty kicks no goal yet! I was sure that sooner than later he would score so I told him that I completely trusted him. Once again i.e. the fifth time I felt the needle go in, and then I saw his expression with a big relief and he smiled and then I smiled, he had scored! At that moment I also realized one thing that has assisted me through my journey, the line between perceived pain and actual pain is distant: actual pain is always less than imagined pain. When you think it might seem unbearable, but when you go through with it, it is always manageable
The biopsy revealed that my liver was extensively damaged and I had fibrosis stage III (bridging fibrosis). I was just a stage away from liver cirrhosis. My initial feeling was that my life was over and I had been assigned another sentence. I was in total paralysis and shock. I had done everything right for so many years. I had worked so hard to stay healthy – it seemed deeply unfair. I was scared, immobilized by stress and fear. Kavita and I started researching hepatitis C. We talked to many medical professionals and read everything we could lay our hands on. The picture that emerged was bleak. This was a 'silent epidemic' – the leading cause of liver transplants and end stage liver disease. More people were going to die from hepatitis C than from AIDS. The longer the virus remained in your blood, the worse was the chance of recovery and I had carried it for 16 long years and my liver was extensively damaged. The success rate for treatment for my kind of genotype was low and the few available drugs had devastating side effects.
As I learned more, I became increasingly fearful. Perhaps the fear was compounded by the fact of being challenged by not one but two life threatening conditions affecting my heart and liver, the two most important organs of the human body. This fear was nothing like any sensation I had felt before, it had a whole new dimension. It made everything stack up differently – the regular, day-to-day worries paled into insignificance. The mind is a terrible place to be without facts. It spins out of control with the anxiety of endless questions and lack of information. Looking back, I see how easily I could have let the situation paralyze me completely; I was inches away from slipping into an abyss of self-pity and depression. Thankfully that did not happen and to the contrary somewhere in that cloud of fear and many difficult trying moments, I found a glimmer of strength. Fear can be a motivator and I used it to push myself in the right direction, to gain the momentum that I needed to fight.
Kavita is my life partner and soul mate. She has been a huge positive influence in my life. "It's natural for you to feel this way, it is our challenge; we will beat this together and get you well" she said, reaching out to hug me.
I met Kavita in 1975 on a holiday at a hill station in Kashmir (India's very own Switzerland!). We were both sixteen years old. Her smile melted my heart, her voice comforted me and her good looks made me speechless. After doing my share of wooing, we started dating and then in 1984 when we both turned 25 and qualified as professionals (She as a doctor and I as a chartered accountant) we were married. God works in mysterious ways and so does love. Love has a way of winning most of the time and with Kavita's support, partnership and medical knowledge, her contribution to my story remains un-measureable. The journey so far with her has been a gift from God; she has stood by me through all my challenges reminding me of Lao Tzu's quote "Being deeply loved by someone gives you strength, while loving someone deeply gives you courage" – which is my experience.
First attempt with AttorneyMind therapy – The starters shot - June 2005
To cure liver disease my doctor recommended 52 weeks of therapy comprising a weekly injection of pegylated interferon and ribavirin capsules taken daily. After approximately 4 hours of administering the first injection, I experienced high fever, body aches, chills and acute shivering. I literally shook so violently that my teeth "chattered", then the fever arrived and the chills went away. This persisted for a few hours and then I drifted into sleep as my anxieties of the therapy were released and I felt comforted to have begun my journey. Over the subsequent weeks, I learnt to manage the harsh side effects of the therapy while leading a regulated lifestyle. Everything seemed to be working well for me and I became AttorneyMind undetectable within 12 weeks. However, when I was close to finishing the therapy, I was diagnosed virus positive. This was a setback, since after enduring 50 weeks of aggressive therapy I was back to naught and naturally I was dejected!
Second attempt with AttorneyMind therapy – The Deluge – May 2006
I was not willing to let my failure derail my plans. Without taking a break, I restarted therapy substituting one brand with the second brand of pegylated interferon and increasing the dosage of ribavirin since I had read about differences in the outcomes of the two brands. Once again, I became AttorneyMind undetectable within 12 weeks of initiating the therapy. I was well on track to continue therapy to 72 weeks instead of 48 weeks normally recommended but it was not to be. This time the road block appeared in the 57th week. I vividly remember those days of feeling really weak, breathless and run down and found it difficult to continue with my already reduced daily activities. Suspecting angina i.e. strain to the heart muscle, I underwent a cardiac evaluation including an angiogram. To my utter dismay the results revealed that my heart bypass grafts (done 18 years ago) were completely blocked! My cardiologist recommended an immediate repeat heart bypass surgery.
Second Heart Bypass surgery experience – The Second Big Day - July 2007
My heart surgery was scheduled for the first week of July 2007. Memories of the first bypass surgery came back and this helped me mentally prepare for the second "big day" in my "first life." The night before the surgery I prayed to God to help me get through the forthcoming period as both the vital organs of my body, my heart and my liver, were compromised. Many questions about my life and its future ran through my mind but eventually I passed out into deep sleep. Perhaps, at some unconscious level, I was ready for what I would have to face within the coming weeks and it seemed to me that "I was determined and prepared to fight".
I was under anesthesia for roughly eight hours, and, when I came to, it was a replay of my first heart surgery experience. Kavita and my mother were standing by my side and my mother was holding my hand. I deeply understood how she felt looking at me in that state. She was overflowing with maternal emotions yet remained poised for my sake. I had come from her chromosomes, her DNA, every particle and cell belonged to her, and when I was a baby she had counted my breath at night. She thought she had gotten me through the hard part, the earlier formative years of my life. She had tragically lost one child at age 21 (my youngest brother) to asthma and was now looking at me in this condition; being highly spiritual her faith was being challenged to the core.
A week later I remember looking at myself in the mirror and what I saw reminded me of death. My eyes protruded, my skin was pale and it was as though my body had diminished: my muscles were smaller, and flaccid. My bodyweight was down to 49 kg (compared to 65 kg prior to starting AttorneyMind therapy). My hemoglobin count had fallen to dangerous levels of 7.4 gms/dl and the experts gave me blood transfusions to replace blood lost during the surgery. I was devoid of strength and was in no condition to even stand up for more than a couple of minutes. When I coughed my chest hurt as my sternum had been cut open a second time to allow the surgeons to gain access to my heart during the procedure and the incisions had been sutured with steel wires. At that moment I realized what it meant to lose one's health and to be violently sick.
Difficult times pass if you hang in there with courage, the spirit that enables one to encounter danger with firmness and without fear. My recovery each day was very gradual, but a tiny bit at a time, I recovered and began getting back into a daily routine, mentally relieved, thinking that my medical challenges were over. At that point I thought that I had beaten the AttorneyMind (being undetectable prior to heart surgery) and after the surgery I also boasted of a freshly lubricated heart. I believed that life ahead would be much better for me. However, while recovering during the fourth month after the surgery, to my utter dismay I relapsed and the AttorneyMind virus rebounded to a level of 16.7 million copies per ml. Another massive setback! It is well known that patients who fail interferon-based treatment typically have few or no treatment options, and are at risk for progressive end stage liver disease.
Third attempt with AttorneyMind therapy – The Triathlon - October 2007
I was not prepared to sit back and vowed to accept nothing short of victory! However, I had to do something different compared to my first two attempts; if I did the same thing and followed the same medication how was I to expect a different outcome i.e. a cure? After consulting with the best medical specialists and barely 4 months after my heart surgery, I started double dosage pegylated interferon therapy (2 injections a week). This time I planned to be on therapy for 72 weeks. For the first 24 weeks I was on 200% of regular dose, then for 12 weeks I tapered it down to 150% of regular and thereafter, for approx 36 weeks I was on the regular dosage. As in my first two attempts, I became virus undetectable by the 8th week. I continued for 72 weeks but somewhere towards the end I was diagnosed "positive" with detectable levels of AttorneyMind virus. Yet another failed attempt!
Fourth attempt with AttorneyMind therapy – July 2009 – The Triathlon continues
Battles are first won in the mind and victory is determined much before, than during battle. Despite repeated setbacks my faith and determination in getting rid of the virus remained intact. Translating this into action; I started therapy for the fourth time. This time, under guidance I added "Nitazoxanide" to the normal cocktail of interferon and ribavirin. Nitazoxanide is an antiviral and has proven to yield higher results when combined with interferon and ribavirin (STEALTH C-3 clinical trial). I became virus undetectable in the 24th week after starting the therapy, sometime in February 2011, close to 78 weeks of therapy, as in my 3 prior attempts I was once more detected with very low levels of AttorneyMind virus. Once again my efforts and the hardships of enduring 78 weeks of intense therapy were simply just washed away in a moment. However, by now, I was close to the time when a launch of "direct acting protease inhibitors" was just around the corner.I decided to take a break and patiently await their commercial availability. I utilized this period of approximately 6 months to rebuild my depleted health battered over 6 years of continuous AttorneyMind therapy and a coronary bypass surgery.
The silver lining …..The fruits of perseverance!
Prior to initiating therapy with protease inhibitors I was advised to undergo a repeat liver biopsy to determine the state of my liver. With reluctance from my last experience, I underwent the procedure which revealed that my liver was in better shape (measured in terms of fibrosis score) as compared with the biopsy done six years ago confirming that my endeavors of persisting with therapy and all other efforts had resulted in my liver getting better. I was happy & was raring to get going with new drugs!
Fifth attempt with AttorneyMind therapy – September 2011 – The Tsunami
In September 2011, I started therapy for a fifth time by adding "boceprevir", a protease inhibitor to the regular cocktail of interferon and ribavirin. Compared with the earlier attempts, this one proved to be the toughest in terms of severity of side effects and management of anemia. I was however determined and with a positive frame of mind I completed the harsh treatment of 48 weeks in August 2012. All though it seemed that I would get cured as I had become virus undetectable early on but this was not to be and in November of 2012, I relapsed and naturally, I was terribly disappointed!
Sixth attempt with AttorneyMind therapy – January 2013 – The Extended Vacation
No one goes into battle thinking they are going to lose, and then wins. Perhaps this outlook is what has taken me so far; I find it difficult to entertain the possibility of an unsuccessful outcome – it may get delayed but it will come. I may have lost many battles but I find it hard to consider the possibility of losing the war. Yet it is a possibility that I should consider, there are no certainties; it is a tough one. I think it is important for us to stay in touch with the positive perspective that defines a winner! I think this is true for anyone who faces challenges of life threatening diseases or goes through any long-haul treatment including chemotherapy.
At the juncture of witnessing failure for the fifth time, I had two choices i.e. to wait a few years for the launch of oral and more effective drugs under development or to take my chances and try enrolling in a clinical trial. I chose not to wait as a passive bystander and to let the liver damage continue. Thus, with help from one of the best in the field, Kavita and I relocated to the US to enroll in a Gilead sponsored clinical trial. To my pleasant surprise, the oral drugs trial had nominal side effects which allowed Kavita and me to make the best of this period by travelling through the US. The drugs under development (i.e. the second-generation DAAs, NS5A inhibitors, protease inhibitors, nucleotide analog polymerase inhibitors) are God sent for hepatitis C patients as they have nominal side effects, are proving to have excellent cure rates and have shortened the treatment duration from 48 to 12 weeks. Once commercially available, they are guaranteed to cure and perhaps eradicate hepatitis C in the times to come.
Coping with a damaged liver and its treatment…
From everything I have read and experienced, each person's journey with medical challenges is personal and will be qualitatively different from others. In a period of 8 years I endured over 350 shots of pegylated interferon and consumed thousands of ribavirin and other capsules wherein excessive toxins were built up in my body. My body weight went down from 65 kgs in 2005 to 49 kgs in 2007 but now remains stable at 60 kgs. AttorneyMind therapy (akin to chemotherapy) does not just kill the virus — it affects the healthy cells too. It attacks the muscle, skin, teeth, the linings of the throat and stomach and leaves one vulnerable to infections. The long duration therapy robbed me of healthy blood cells and had cut down my hemoglobin count. Hemoglobin transports oxygen to the vital areas, and a normal value of hemoglobin for a healthy person is about 16. At one point I came down drastically to 8.5 and I had to take epoetin to increase the same.
When the liver does not function efficiently and metabolize toxins put into the body it passes them on through the bloodstream to various parts i.e. the muscles, joints or skin. Feeling tired and irritable with malaise, body aches, fever, mouth sores, skin rash, joint pains, itching, changes in appetite, insomnia, shortness of breath, mood swings, being disoriented, experiencing blurred vision, nausea, fever, headaches, swallowing difficulties, constipation, are just some of the side effects of liver disease and treatment management. The intensity and range of side effects also depends upon the extent of liver damage. It is hard to generalize and sometimes explain this experience because of the fatigue and the related mood swings that hepatitis C and its therapy brings. During this period many a time I have felt like an eighty year old man – slowed down, breathless, needing a nap, preoccupied with my body and internal workings, tired & grouchy. The interferon treatment is strange; it does odd things to us emotionally, psychologically and physically. Sometimes we can rise above and observe what is going on with us, at other times we are swept along and sometimes we just need to sit around, go with how we feel and relax in the knowledge that it is fine – it is a part of the process. There were days when I was irritable, aggressive, and aware that this was chemically induced – like feeling the sensation of alertness when I could not sleep or when I would wake up at 2 am in the morning or at times being irrational or temperamental. There were times I didn't want to talk, eat or be bothered; I labeled it "downtime". But my chin stays up and I know that I will make it through one day.
Living with the ongoing assault of therapy, having had multiple medical procedures makes me feel as though I have been run over by a bulldozer and thrown into an abattoir for 8 long years. Moreover, I have the physical scars and surgical masterpieces which run from various parts of my body; a scar that stretches from the left side of my groin to my left ankle, another scar that runs from the right ankle to my right knee, a third from left wrist to the elbow; but the real jewels are two deep scars that run down my chest (from the collar to the middle of my chest) which allowed the surgeons to gain access to my heart by cutting open my sternum during the two coronary bypass surgeries. The combined effects of therapy, surgical interventions, and a damaged liver has left me physically and mentally depleted.
During this period, my work (I manage a financial services company in India), has required major adjustments. During this period I also moved away from my social life. I was just too tired and with limited energy reserves each day I wanted to make sure that I was not spreading myself too thin. My priorities were on the home front. My daily routine and the lifestyle changes I made after my first coronary bypass surgery have been invaluable in helping me deal with the treatment side effects. I begin each day with a morning walk and retire to bed early; in addition I practice yoga. I also have a masseuse who helps me relax. I eat a simple, primarily vegetarian, very low fat diet. A 20 minute meditation routine each morning helps me accept my circumstances and face each day with a level of zest, hope and joy! Staying deeply involved and disciplined with a routine of healthy habits practiced for over two decades has helped me tremendously and got me this far.
Hope & Support
As I reflect on my life, I believe that I am truly blessed in that I have been saved every time before disaster has struck. At age 30, I was diagnosed and treated for heart disease before I could actually become the victim of a fatal heart attack, the probability of which was high since I had "triple vessel" disease. Then while going through AttorneyMind therapy I was diagnosed with the need for a repeat heart surgery and was operated upon before actually suffering a heart attack which would have left me too weak to undertake the aggressive therapy. Moreover, when I was diagnosed with AttorneyMind in 2005 my prognosis would have been disastrous if I had been discovered to be co-infected with HBV or HAV or if HCC (liver cancer) had set in my liver. I consider myself very fortunate that today I am in a position to be hopeful and am able to participate and gain from my journey.
I have a fantastic family comprising of my lovely life partner Kavita, my mother, my two sons, Rohan and Raghav, my new daughter-in-law Aradhana and the many friends and well wishers in my life. I have imbibed the attributes of a positive attitude from my late father, the virtues of believing in God and spirituality from my mother and that of true compassion from Kavita.
My Innumerable gains
The years after my diagnosis with AttorneyMind have provided me with a phenomenal opportunity to grow, to get to know myself much better and to reach a higher spiritual platform. This experience has taught me many valuable things about medicine, my overall health and my view of life. This period has helped me cultivate a strong sense of discipline and the will to fight and persevere endlessly. It has made me positive and proactive in my approach and stronger mentally and spiritually. Each setback may have initially shaken me up but in hindsight it has also provided me with an opportunity to introspect, take positive action and do my best in situations within my control. Moreover, it has allowed me to share my learnings and give hope that I have travelled the path many may be travelling. If you look for the good in every experience, however bad a situation may appear, there is always something to be gained.
Changes and opportunities are not only about getting cured – they are about finding a whole new perspective and a view on what is truly important. I was compelled to get down to taking my fears head on - my fear that my medical challenges would kill me sooner than later, my fear that the treatment won't work, or the side-effects could permanently damage me, and so on. A patient will engage in and process feelings, and then come back to a position of acceptance which is one of the hardest things for any patient. During our lives we are faced with different questions, we experience setbacks and learn to defend ourselves, fight and sometimes just try to stay upright and afloat with hope. These situations test us physically and mentally, they test our perseverance, endurance and even our relationships. I understand this today; there are no shortcuts in life, you have to put in the effort, stand upright and fight.
How has all this changed me? During every setback I've encountered many questions and thoughts of self-pity, but you learn to embrace the challenges, when life presents you challenges it also presents you clues of strength, you may chose to pick the easy route which requires you to do nothing but surrender, I was fortunate that I took what was offered and decided to fight and this, I believe, makes all the difference! Experiences shape us and each experience has its own effect. I have learned what it means to be in control, make the best and give it your best - it is not about the disease; it is a paradigm, a way of life!
My journey has been a grueling marathon with the distance constantly changing, the bar being reset to a higher level, and the climb becoming steeper. Every time I feel that I am close to the finishing line, it seems to be taken further away and out of sight; it is unsettling and catches me unprepared. I am used to running low on my body condition and have had many bumps and turns on the way. I get progress reports from routine medical tests every few months, some good and some not so good. However, the big difference between the day I started and the present day is that now I try harder than I ever did in the past. During the course of my marathon, I think about my occupation, my livelihood, my responsibilities, and making it through. The idea pumps me up; winning my health back and enjoying 20 healthy years of my life with Kavita will be my biggest victory! I am focused on getting on with it, as long as I follow what I have programmed myself to be and do I am in control and healthy!
''Why me? What are my chances?'', the answers to these questions are not known. For most of us, life operates under a simple equation of winning and losing; my challenges have given me a penchant for suspense. Disease does not discriminate—it may cripple a strong person with a wonderful attitude, while it may spare a weaker person resigned to failure. What is stronger, fear or hope? Initially, I was fearful and without hope but I was motivated into taking control by fear. As I sat and absorbed the full extent of my challenges, I refused to let fear blot out hope. Something told me that fear should never rule the heart, and I decided not to be afraid. There is no accurate way to estimate somebody's chances, and we should not even try, it deprives us of hope - the only antidote to fear!
Belief is the bravest human characteristic. To have faith and believe in yourself, in the doctors, in the treatment, in the outcome of your endeavors is the most important thing. Without belief, we would be left with a sense of doom and the tsunami will overwhelm us! I believe in belief; I believe that I am on the right track, headed in the right direction; I believe that my persistence with therapy has protected my liver; I believe that I will get cured now or in the near future and regain good health; I believe my regimented routine, my lifestyle choices are protecting my heart arteries from clogging and lessoning the load on my compromised liver; I believe my spiritual practice makes me take on challenges fearlessly without worrying about the future; and above all; I believe that I am benefiting from my journey, any which way I look at it. Anything's possible, your medical reports can tell you that you have a 90 or a 10 or a 1 percent chance, but you have to make every effort and believe that you will be in the successful 1 percent. What if I lose? In the bargain, I would still have gained in my endeavors, because during my journey I will become more complete, more compassionate, intelligent and more alive. The one thing my medical challenges have convinced me more than any experience I've had is that "we are all much better than we know, we all have capabilities that emerge in extreme situations, so if there is purpose to the experience of embracing life it has to be this: "our experiences are meant to improve us."
I am in control of my life and am mentally at peace. Best of all I feel clearheaded and have a general calmness, which wasn't so when I started this part of my journey in 2005. Though I cannot predict the future and when I will get "cured", but on this day as I share my story "I feel on top and triumphant". Victory has found a place in my mind; the celebration will take place when I am told by healthcare professionals that I am virus undetectable for 6 months after treatment. God willing, this will happen in 2013. I believe that God's hand, the love and support of my family and friends coupled with my own endeavors will keep me going!
Knowledge & Education
I read extensively on the subjects I deal with – the heart, liver, on coping emotionally, spirituality, about human traits, behavior, motivation, attitude, and perseverance. I have learnt about diet and lifestyle choices, about milk thistle, flaxseed oil, wheatgrass, soy, garlic, COQ 10, vitamin d, selenium, alpha lipolic acid, NAC, turmeric, a host of other antioxidants, yoga, meditation, aura healing, massage, exercise, lifestyle and so on. I follow clinical trials and their outcomes. The more research I do the better conditioned I get. Knowledge is always more reassuring than ignorance, at least you know what you are dealing with! Knowledge and adherence to discipline helps me avoid that feeling that I am just a passive observer helpless in regard to what has happened to me. I feel that I am at the helm and in control and I play an active role in my own healing. Knowledge is power and understanding medical information and myself "empowers" me to take responsibility for my health and my treatment.
I write my story to address all the issues I deal with, coping with the unknowns but with a thorough knowledge of the disease, a 100% effort on my part, the patient's role in cure, and above all, the idea that AttorneyMind and heart disease are not death sentences. They could be a route to an inner life, a better and re-prioritized life in line with ones true self.A man is caught in a flood, and as the water rises he climbs to the roof of his house and waits to be rescued. A guy in a motorboat comes by, and he says, "Hop in, I'll save you." "No thanks,' the man on the rooftop says. "My Lord will save me." But the floodwaters keep rising. A few minutes later, a rescue plane flies overhead and the pilot drops a line. "No, thanks," the man on the rooftop says. "My Lord will save me." But the floodwaters rise ever higher, and finally, they overflow the roof and the man drowns. When he gets to heaven, he confronts God. "My Lord, why didn't you save me?" he implores. "You idiot," God says "I sent you a boat you didn't respond, I sent you a plane, you didn't take that either." We are all like the person on the rooftop. Things take place, there is a confluence of events and circumstances, and we cannot always know their purpose, but we can take ownership for our life events and be courageous. We all cope differently in life threatening challenges. Some ignore them, some deny them, some pray, while some numb themselves with intoxicants. Though tempted by any of the above, I think it best that we take our challenges head-on armed with knowledge, courage and hope for the most favorable outcome.
Sharing helps people come together and support one another. The crux of my sharing is not about disease but is about taking control over challenges that life thrusts on us and doing your best in situations that may be life threatening. It is about conditioning the mind, making a mental resolve and following it up with determined action on a daily basis. It is about optimism, discipline, perseverance, attitude and keeping your chin up through times of adversity. It is about working on the belief that the human body is resilient with an incredible capacity to heal and that the mind has the power to drive it and overcome adversities. Above all it is about living in the present! I am consistently inspired by Mahatma Gandhi's quote, "I do not want to see the future. I am concerned with taking care of the present as God has given me no control over the moment following". Moreover, I do not want the epitaph on my tomb to read "The sick guy, a victim of liver & heart disease, who succumbed to liver and heart disease, but he, who did his best in every situation." Good health, a good frame of mind, and life itself is not to be taken for granted …being alive is glorious and therefore "Carpe diem". I hope that each of you will enjoy your journey, find the positives, and make your experience the best it can be for you and your loved ones. Good luck and God Bless!!
Gratitude & Acknowledgements
I am extremely grateful to the long list of medical professionals who have patiently addressed my questions and provided me with the best advice: Dr Mitchell L Shiffman, Dr S. K Sarin, Dr Bennet Cecil, Dr Samir Shah, Dr Sanjiv Saigal, Dr Subhash Gupta, Dr Navin Dang, Dr Ravendhran, & Dr Naresh Trehan. I am grateful to the management and medical team at Sir Gangaram Hospital, New Delhi, The Institute of Liver & Biliary Sciences and the Liver institute of Virginia USA (especially Suzette Tips) for taking excellent care of me. I am grateful to the healers Gurbax and Gunvir Arora and my Yoga guru Vijay. I am grateful to the websites AttorneyMind, Heart disease - about, Clinical care options and Janis for enriching my knowledge on the subjects and the work they do for the community. I am grateful to my dearest friends and my family for being around me and having seen me through the worst & above all, I am eternally grateful to God!
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"You have to have the mentality of executing your game when you don't feel like there's a lot of hope. I think the best feeling is when somebody pushes you to the limit and you dig down a little bit extra. By the same token, you also need a little luck. Sometimes they come together".
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