In our bid toward scholarly integration of Medical education and research we thought the best approach would be to put the patient at the center of Medical education and research considering that the patient is the primary beneficiary of Medical education.
Below is a narrative from an Indian patient of inflammatory bowel disease who has shared his trials and tribulations with the Indian healthcare system along with how he managed to overcome it by working closely with his healthcare professionals as well as integrating it with other alternative strategies.
"I spent first 10 years of my life absolutely healthy. Started becoming sick after that. Saw few local doctors both allopathy/homeopathy, they said everything was fine, but I wasn't improving. Later met one of the leading gastroenterologist at ABCD Institute of Gastroenterology who diagnosed me as having TB in March 2001 and put on Anti Tuberculosis Treatment for 3 years that ended in march 2004.
After 3 years of pain and suffering, I went from bad to worse. The doctor said ' why did you come again, your treatment is over'. I asked doctor the reason for not recovering he said ' it might not be TB, it might be some other disease, get admitted we will evaluate again'.
I could not digest those words, I was seeing him every fifteen days for 3 years with all the tests and reports.
2004 and early 2005 were the the darkest days of my life. With no proper diagnosis and treatment, I was going nowhere. Every day was a challenge. I cloud barely drink a glass of fruit juice. No question of taking solid food. Just a bit of solid food in my mouth, it used to cause intense burning. If I managed to forcefully swallow some food, I used to vomit immediately. I was weighing 30kg, just skin and bones. Everyone lost hope, I was not knowing what went wrong and on top of that, everyone who came to see me used to say " your parents and doctors are putting all the efforts to make you healthy, but you don't seem to put any kind of effort or show any intension to get better. Looks like you are enjoying being sick and you want to remain sick".
They were giving me all kinds of suggestions ' why don't you eat, why don't you get up from the bed etc etc. I felt inside ' if these people, even for a minute, go through, the kind of pain I'm bearing for years and, manage to live for a couple of days, I would listen to their suggestion.
Suicidal thoughts were coming, I decided to end my life, luckily my mother came to my rescue and told me ' if you want to die, you should not die alone, I will also end my life along with you ' she said live and fight. That day I promised her, come what way, I'm not going to give up.
I saw few more Gastroenterologists, Surgeons etc, nothing worked. I knew my parents were crying everyday. Pouring lakhs and lakhs of rupees. Meeting doctors, hoping to find a solution. I wanted to get well, become healthy and show the world that I'm not enjoying my ill health. But i was helpless, With no hope in sight, I thought ending my life would put an end to all my problems and the problems my family is going through because of me. Deep inside me I felt my family would have lived happily and luxuriously if I wasn't born.
Even with all things happening in the background I passed my CBSE 10th exams.
Later I met *Dr. S at EFGH hospitals Hyderabad.
He gave me rebirth I should say*. He asked my parents to stay outside his consultation room and asked me to speak my heart out. He listened to me patiently for an hour. He looked into all of my reports which ran over few hundreds of pages. Not ignoring a single report. He made a diagnosis of Crohns, told me it does not have cure and I have to learn living with it for the rest of my life.
I cried for years together, not even a single night passed, without seeing my tears. Somehow i accepted the fact that I have to start living with an incurable disease. I started responding to treatment. I never imaged I would join college for intermediate. I wanted to study at home and take Inter exams. But gathered courage and took admission at an intermediate college in Hyderabad. Got state 8th in my inter.
I did well for 2 years under treatment of Dr. S. I finished my Inter in 2007. I decided to join Pharm.D as I was determined to work in health care and not fit enough to do MBBS.
Dr. S got an opportunity to work in USA, he left, referred me to his colleague. Initially I did well under his colleague, later my condition got worse. He advised me to undergo an surgery, I agreed to get it done, I gave my EAMCET exam and immediately got admitted the next day. As they were doing pre surgery examination, few tests etc, one person told me that Dr. S was back in Hyderabad. I cancelled my surgery and met him at IJKL Hospitals, Jubilee Hills. He evaluated me, said he will try to manage with medication and if that does not work, he told I have no other option but undergo surgery. He put me on inj. Infliximab, each dose of it costed 80,000rs. It has to be administered in ICU under supervision.
At that time, Dr. R sir was the ICU head. (Later i went on to do Pharm D at Sri Venkateshwara College of Pharmacy which had an MOU with IJKL Hospitals, Jubilee Hills, where I was undergoing treatment, I did my 6 months Internal Medicine under Dr. R sir in 2014)*. I used infliximab for 5 doses, my immunity went down, chicken pox virus, which remains dormant within us, became active again and I developed varicella zoster infection, one of the most painful infection to deal with.
Later Dr. S moved to Orissa. I was continuing to take meds on my own. As the time passed (2013, i was doing clerkship), disease progressed, earlier it was just Crohns, now it is Crohns plus its complications. I developed a similar complication a decade back (2003) for which i used Ayurveda and it worked. I went back to same Ayurveda doctor, he started me on a very strict Regimen with lot of diet restrictions. All I eat was rice cooked with dal without oil, salt With this Regimen, I developed Hemolytic Jaundice, Hb deceased, serum bilirubun and liver enzymes increased.
As S sir was not at Hyderabad and moved to Orissa, I met few more gastroenterologists in Hyderabad, nothing worked. I tracked Dr. S, went to Orissa, met him, his magic touch made me recover. This all happened during my 5th year Pharm. D. I was really excited to start my internship, but with all these things happening I was not sure if I would start internship. Luckily after meeting Dr. S at orissa, I recovered and started my internship. In 6 years of Pharm D I got almost 3 to 4 relapses every year. 2nd year was the only time I took Pharm D in healthy condition. Other 5 years I took exams when I had a relapse.
I Started my internship in 2013, did first 6 months well, again got a relapse. All my hopes of doing Internal Medicine Internship under Dr. R sir crashed. I Got admitted under Dr. R recovered, finished internship under him.
With all the health issues bothering me, my only objective was to finish Pharm D on time (which I did), get a job, make some money, take care of my own expenses and not depend on parents. As I enjoyed teaching ( Even when I was a student, I was teaching my juniors right from 1st year to 5th year, almost all the subjects of Pharm D and specifically *Organic Chemistry*, some times I skipped writing my internals to train students preparing for supplementary exams), I joined as faculty of Pharm D, two months after I joined I got one more relapse, had to undergo couple of surgeries.
I wrote a mail to Dr. S, he referred me to his HOD, Dr. , working at MNOP Hospital, Chennai. I'm currently undergoing treatment under him.
I had the fortune of working with few of the best doctors as a part of my clerkship and internship. They had a huge amount of influence on me, standing next to them felt great, I used to get goose bumps when patients used to keep Namaskaram to them with gratitude after their loved ones recovered from serious conditions.
Even after I joined as faculty, I used to meet them frequently and spend some time with them. Every time I met, they used to say 'You are capable of doing so many things, why to do limit yourself'. I used to respond 'I'm happy doing whatever I am doing, why should I do more and even if I want to do more, my health will not support me.'
Slowly I felt, how long will I cite my disease as an excuse and stop doing things that I'm capable of doing, which has potential to inspire and guide many students who were looking for guidance.
I thought what's the point of having capability, without it being useful. I identified my health as my biggest limitation and decided to break that limitation. I felt without becoming healthy, there is no point sittings at home and dreaming about things which I was capable of doing. I tried Allopathy, Ayurveda, Naturopathy, etc. They helped me to some extent, they helped to be alive, but not helped me to the extent I wanted. Then I thought let me try YOGA. On the suggestion of my aunt who is fighting Ulcerative Colitis, I enrolled for a yoga program, Inner Engineering, in 2016, offered by (...). Right from day 1, it had a profound impact on me. I came across many dimensions of life, which I was unaware of or ignored. I realized how foolish I was as I denied my aunts request to do Inner Engineering in 2012.
Prior to 2016 I was experiencing a minimum of 3 to 4 relapses every year, but after doing Inner Engineering, from 2016 to till date, I have got only one relapse. My colonoscopy looks lot better, Infact it's the best in all the colonoscopies done over last 20 years.
Earlier I used to say Crohns is my best friend and it has no intention to leave me as long as I am alive, but now I feel, there is a solution, I can get rid of Crohns if I'm really committed. My Health improved, I started doing workshops at my home every Sunday with 8 students, I did those workshops at my home for 2 years, attended by over 1500 students. I realized the Inspiration after listening to workshops lasts for only few days (our half life is too short), so I started doing 2 month modules with classes every Sunday.
Earlier I never moved out of Hyderabad, even if I moved out of my home, I used to carry water bottle and lunch to avoid outside food and water. As my health started improving and the feedbacks I got from students showing the impact my workshops are making, I thought of taking them to more students. I decided to go to colleges and do workshops. I did workshops in around 75 college so far. *My target is to do workshops in every college that offers Pharm D program in India*.
I was facing resistance from my college in doing the workshops and modules. I left my job and decided to start working independently. I thought of reaching students of those college too and giving them a glimpse of what I have to offer, I felt organizing conferences will be the best way, stared organizing conferences. So far i organized 5 international, 13 are national conferences. Most recent conference was at JNTU kukatpally Hyderabad attended by over 1000 delegates from over 100 colleges, ie close to 40% of all Pharm D college across India.
I did not wanted to leave those who could not attend my workshops or modules or conferences, I wanted to reach them too, so I started whatsapp groups in 2014. That group has now become one of the biggest group with over *6000 students and professionals of Pharm D from over 230 colleges of Pharm D, 100 hospitals and close to 100 organizations where Pharm D graduates are working*. We have 16 groups for girls and 7 for boys."
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