HIV Tales from my Diary-Tale 10

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The Malay word “Sayang” has no equivalent word in English to describe a common emotion in Malaysia. it is affection, love, sorrow and pity all at the same time. The nearest English word to express the same is ” bitter sweet”. That day was also a bittersweet day for Mansukh. It was after a nine month usual wait of human gestation that Mansukh was blessed with a son and that too on the day of birthday of his father. An Impromptus party was a double dhamaka on its way and in full swing ,when a sudden twist occurred. The fire crackers will become damp squibs was not imagined by anyone. As it happens many a times , the dish turns out to be agrodoice , the bitter taste of sweet dish overpowers. The breaks on the party in full swing came in the form of sudden gush of blood spilled on the floor. ManSukh’s father vomited blood and fainted. 

Blood reminded him of his discovery of some medicines found accidentally in his father’s cupboard some months ago. He could clearly recollect ,the Goggle search about the medicines,which made him dumbfounded. His blood got drained instantly. Still he had no guts to confront his own father. Mansukh did not want to wash some dirty linen of his father ,even within the four walls of his house at that time. But , this turn of events forced him to confront her mother. The truth lay bare ,in front of his eyes , drowned in a pool of blood. Now , was no time , however , to run away from reality. It was rather time to rush to the hospital. ManSukh’s first encounter with reality was like a bitter cucumber, whose head was not cut and rubbed with salt. Even after three and a half decades of the epidemic , the attitudes of health care professional has not changed. The first hospital , where he took his father , refused to admit him after knowing his HIV status. The second hospital , where , he concealed the fact at first go , did admit , but the attitude there also took no time to change colors ,like a chameleon ,after revelations of HIV status on fresh testing. Mansukh had no alternative but to have a brave face in all odds. By now his mother has told him the history. She told him about me and the treatment I offered in 2003. He faced the doctor and told her about his father’s HIV physician and requested her to seek my help. His own classmate , who was the treating physician too ,in that corporate hospital ,was so much under the weight of her degrees and ego that she refused to have my (a senior and known for HIV expertise) advise and help. She kept on wearing the veil of pseudo knowledge and refused point blank to ask me , the Sukhmeet’s ( ManSukh’s father ) HIV physician since proverbial ages. She said,” no second opinion, if you want you take your father to him”. Believing in his classmate and doctors abilities , he and his family continued to suffer in poly pharmacy and the whims of corporate doctors. Two weeks down the lane and no improvement in his father’s condition gave a push to the rebellion in him. He got his father discharged and sought my expertise. 

The moment I saw Sukhmeet, I was taken back ,to a decade and half ,in time. 

Sukhmeet was referred to me by a smart general physician after rightly suspected and detecting HIV in him , who had suffered from an attack of Herpes Zoster.

 I was shocked to learn that Sukhmeet ,had no high risk behavioral activity ,which could have allowed the entry of the virus in him. I could only put my needle of suspicion in his acquiring HIV to the needles used for taking his blood for donation – donation of life to others. His habit of donating blood and save others lives probably led him to the world of AIDS. All due to some ,mean, greedy healthcare worker ,during the process of blood donation. Money can really kill conscious, I thought. 

The high pedestal of society on which Sukhmeet was sitting proved to be a hurdle in his treatment. I started ,the gentleman ,with the best possible combination of drugs of that time ( Stavudine – drug as extinct as Dinosaurs today Lamivudine and Efavirenz ).

Since purchasing drugs from the market was like facing the piercing eyes of a policeman by a thief, in those days, Sukhmeet , like many of my other patients ,also asked me to get medicines for him ,from the market. This all for anonymity. I did the needful ,goes without saying. He was also found to have TB in his lungs. More medicines were prescribed to him. 

More Medicnes and less faith is a rule. How could Sukhmeet be an exception. He left everything and switched over to Haldi ( turmeric) and Gau Mutra ( cows urine) on the advise of a practitioner who proclaimed himself to be an AIDS specialist and was on the run to make money at the cost of people’s life. The natural ways of unnatural doctor , so as to say, were not to work and they did not work( treat ) too. 

Sukhmeet ,returned to my fold ,not after a lapse of very longtime ,but with a lot more deteriorated health. 

Although restarting the drugs in treating HIV is not easy and always useful, yet I took the risk. Years rolled down. Journey of life for Sukhmeet once again came back to highways of health. Bittersweet dish returned , however. Stauvudine ,the dinosaur, started showing its colours. Sukhmeet’s cheek looked withdrawn ,his neck acquired buffalo hump proportions and he started looking gravely ill despite being doing fine otherwise on virological and immunological parameters. His social status will not allow him to be moving around with the condition, doctors called ” lipodystrophy”. Once again ,he was about to shun allopathic treatment but was caught by me ,in time. 

Switch from Stauvudine to Zidovudine ( another drug) helped stay his facial appearance from further deterioration. That was 2004. Habits ,they say ,die hard and so do the beliefs . A person may die of them but they don’t die. Sukhmeet once again faultered ,despite knowing that only route to survival with HIV was 100% compliance of drugs. He became casual in taking his medicines. 2007 , he was back to me once again. He was back to me after a lapse of couple of years, with hardly any life left in him. He was back once again with the assurances of promises to be kept. New drugs , new life appeared for him and once again he was back to life. But , he did not forget to tread his own path. Cent percent compliance of doctors advise was not his cup of tea despite the fact that he dealt in tea and wanted people to take tea 24x7as a habit. The expected occurred again. 

Today ,after a decade later he is back with me , after spoiling his own , as well as his son’s moment of joy and making an agrodoice of a sweet dish. 
Celebrations and jubilation in full swing to celebrate his first grand son party were soiled by his blood on the floor. 

 When I asked his son , why did he not take care of his father when he found HIV medicne in his cupboard, he shared his cowardice to confront his own father. I also thought , how can a son wash his own father’s dirty linen , stripping them down to birth suit with holy water from the Ganges before final adieu. He had , naturally , no guts to confront his father. More than his father , however , he was more astonished to observe healthcare workers attitudes. It looked as prehistoric three and a half decades ago. one hospital refused to admit on prior intimation , other becomes reluctant to keep after detecting on their own.Young doc doesn’t want to consult senior. Mansukh was shattered. He was lost in his own jungle of dense sad forests when he brought Sukhmeet , his father ,and my old patient, to me. He was accompanied by his mother , who was not a stranger to me. Once again , the story was repeated. I got annoyed , showed my anger to Sukhmeet and his wife. The annoyance ,we , the doctors can’t resist , when we are frustrated with our failures in treating a patient successfully. Although in most cases the cause of failure is non compliance by the patient , yet the doctors take it as their own. The failure of therapy ,in case of HIV ,is more complicated despite so much advancements. From ,no drug to one to three to twenty plus drugs known today, from one to two to six groups of drugs available today to treat HIV, treatment becomes more difficult rather than easy in patients like Sukhmeet. A patient failing you in complying your orders with a regularity of pulses of a healthy human being. Their regular irregularities signal severe disease and a moribund heart. Like one of my earlier patients “Prateek “, Sukhmeet , was also out there to teach me more and more of HIV medicine. Once again , I found myself in the school of learning and on the path to learn to use new medicines from new and old groups of drugs available. I was challenged to bring the sinking ship of Sukhmeet, out of deep waters ,once again. I ran helter skelter ,from one book to other,from one senior to other , from one company manufacturing HIV drugs to other. I ran just to find a perfect toe chain for his damaged vehicle. Choosing a combination of Dolutegravir 50 mg twice a day and a single pill of Tenofovir and Emtrictabine daily , at the cost of around 6000 rupees per month for life time was a painful decision for me, but a physician is bound to take pains for the pleasure of others. It is a different matter that some consider pain of a physician as their pleasure. The fact remains, wearer only knows the site of pinch. Sincere doctors keep doing things for restoring public faith. I am no exception. I keep learning. If my first patient taught me lot of HIV Medicnes , my latest patient Sukhmeet is also out there to teach me use of newer molecules. He , I am sure will live on ,to enjoy the joys of his grandson’s , son birthday party. He is only 52 , after all. 

I wish him long life and wish to keep learning ,but of course not at the cost of patients like Prateek and Sukhmeet , who continue to loose their battles of life , just out of ignorance and less belief in their doctors. 
Marviroc, Enfuviritide, Etravirine and rilpivirine, raltegravir, elvitegravir, Dolutegravir, Darunavir, Vivecon and bevirimat are the new alphabets of the language of HIV Medicines , whose grammar is yet to be learnt by me. I need to make sentences and write essays. 

I am sure to learn it all without getting new Prateek and Sukhmeet. 

Rakesh Bharti