Sanjay Sharma is looking up the motorsport event calendar on a Saturday afternoon, choosing the one he can attend. “Can,” not “want to.” There was a time when working for a motorsport company meant he could indulge his passion, zigzagging across the tour circuit, getting behind the wheels and travelling across the country and world. A kidney transplant and a bout of cellulitis later, he measures his life with reason rather than passion. So, he chooses what he “can,” not what “he wants.” Sitting at his corner office, he says, “This is a borrowed life and I ought to respect it. For long I have given in to my wishes, now it’s time to give in to what my body wishes,” says Sharma, who may not be racing his life anymore but can still make it to the finish line, slow and steady.
EARLY DIABETES AND KIDNEY DAMAGE
Sharma, 57, developed diabetes when he was 36. That was the first alarm call but he didn’t take it very seriously. “Yes, I took the medication but an irregular, hectic lifestyle that my job entailed meant that I ignored the supportive management and discipline that my condition required. Often, we fail to realise that diabetes is a lot about understanding your body needs and their management,” says he.
The diabetes impacted his kidneys and he developed renal issues in 2017. “I had trouble bringing my creatinine levels under control and by the end of December that year, they reached a criticality level of 8.” He was recommended dialysis for five months after which a transplant seemed inevitable. He consulted Dr Sandeep Guleria, Senior Consultant, Kidney Transplant, Indraprastha Apollo Hospitals, who led him through the processes patiently and advised him as a friend would, instilling confidence about a transplant procedure. “Most importantly, he told me how he was handling so many transplants a day and how recipients got a second lease of life, some with more complexities, some with lesser adjustments,” says Sharma.
Sharma counts himself lucky because he didn’t have to wait for a donor. His wife and sister volunteered. But what he didn’t know was that it’s not enough to have a willing family. “The parameters need to match even if it is family. There’s a detailed investigation into the donor’s medical history and an assessment of possibilities. In the end, my wife, who is not from my family gene pool, qualified on all markers. This process is also long, about four months, and I had to manage with dialysis in the interim,” says Sharma. Besides, he had to prepare for an altered existence. “It was not just about me, even my wife had to re-condition her life to live with one kidney going forward,” he tells us.
TRANSPLANT AND THE DAYS AFTER
Post-transplant is an extremely sensitive period where the body needs to attune itself to the new organ. Rejection is the body’s way of not accepting the kidney transplant. Although rejection is most common during the first six months after surgery, it can occur at any time. Fortunately, the transplant team can usually recognise and treat a rejection episode before it causes any major or irreversible damage. “So, the first seven to eight days in the ICU are very crucial to observe any complexities or allergic reactions and address them immediately. Fortunately, my recovery was fast and on the third day, I was chatting with the nurse and doctor. At the end of my mandated stay, I was discharged. And it is this post-hospital phase that’s actually the most challenging and decisive.
The hospital stay is like being on an auto-pilot mode. There’s always somebody to watch over you. At home, all the counselling, awareness drives and advisories do not prepare you for the toughest job in your life, to be responsible for each breath that you take. There was a complex list of dos and don’ts, what I should eat and not eat and most importantly a strict adherence to hygiene protocol,” says Sharma.
At home, both husband and wife isolated from each other, staying in two different rooms with independent set-ups for almost three months lest both fall sick together. Sharma was told to strictly keep off even the slightest infection in the body. “Most people tend to relate infection to what you’ve gone through. But what you do not realise is that you are so immuno-compromised that even the slightest cough and cold can have a cascading impact on your body and make you vulnerable. We were asked to eat well and do small exercises but the toughest part was to stick to routine and have the medicines at a fixed time life-long. If I had to take them at 9 am or 9 pm, it couldn’t be five or ten minutes later. I tried to keep to the pattern but once or twice was late by a few odd minutes, quite unintentionally. And the test results were skewed, reflecting the aberration. The drug cycle has to have a minute-to-minute consistency. Even certain tests have to be conducted within controlled conditions. I even call my lab technician 15 minutes before scheduled time as delays could affect my accuracy,” recalls Sharma.
Then there were the tedious daily checks of temperature, blood pressure and weight, again at certain times of the day. Sharma had to take his body temperature every morning; an increase is usually considered a symptom of either organ rejection or infection. Both rejection and infection are easier to treat when recognised early.
Blood pressure being a common complaint post-medication, a kidney recipient has to keep it under check. He/she would also have to weigh themselves on a standard bathroom scale at the same time each morning after going to the toilet. If the weight gain is beyond a prescribed limit, the recipient could be retaining fluid. “This solitary confinement with almost an hourly compliance to some routine or the other can be taxing on the emotional health but the fact that you are alive reminds you why every little hassle is worth it and that your wife had compromised her life to save yours,” he says.
As Sharma became an avid follower of rules, he got back to work. But he never faulted on a doctor’s appointment (even now he makes sure that he sees Dr Guleria once in four weeks). He managed to keep COVID at bay but couldn’t stay away from infection. Early this year, he thought he had accidentally injured his feet while driving in Goa. The bruising and pain turned out to be much more sinister. He was diagnosed with cellulitis, which if not attended to and controlled immediately, spreads easily and has the potential of becoming life-threatening. In Sharma’s case, it could trigger major complications. He couldn’t risk another surgery, surgical removal of the infected part being one of the options to contain spread.
Sharma’s mobility was severely affected and he had to deal with the pain through the antibiotic route. Contrary to a normal person, he had to be dosed longer and required two to three months extra to heal and pull himself off the edge. Till date, Sharma cannot figure out how he caught a bacterial infection out of nowhere. “That’s how immuno-compromised you are,” he adds.
The one thing the Sharmas have internalised is food discipline. “We have memorised the calorie value and nutrient quota in each bite down to the size of the potato one should consume. We never eat out and while travelling are extremely particular about what would suit us in our compromised condition,” says Sharma, who now realises that half his problems had stemmed from his diet and were avoidable only if he were a bit more mindful. “We are what we eat,” he tells everybody these days.
Though Sharma can travel, long vacations are a strict no-no. “Particularly with COVID a reality now, we cannot take a risk with our immunity-suppressed bodies. So it is mostly driving holidays and usually to places where we have a support system and access to health facilities. One has to factor in emergency situations,” says Sharma.
WHAT HOLDS HIM TOGETHER
Undoubtedly, the relationship that he now has with his doctor, Dr Guleria. Sometimes it is difficult to make peace with yourself when your rescheduled lifestyle doesn’t agree with the goals you had set so far. “But Dr Guleria became my motivator and friend and always speaks to me in the buddy language. That eased a lot of anxieties. There was a time when I was scared of flying because my feet would swell up. He would jokingly say, ‘buy shoes a bigger size.’ Similarly, when COVID was raging, he told me to strictly stay indoors, get accustomed to remote living and minimise interaction or else ‘lie down with a ventilator.’ So he was stern and jocular at the same time. But the barriers were broken and I completely trust him,” says Sharma.
Sharma has paid for an irresponsible lifestyle and now tells everybody about the virtues of going back to the basics. “Growing up, your parents tell you to follow very simple things which might seem very revolting to you, like eating well, sleeping on time, mandatorily factor in a play hour even in the time of weekly tests, developing a routine even during vacations….all these set up the regulatory perimeters of your well-being. Had I complied with them, my kidneys would have been healthy.
I have paid for my carelessness. My life is on rent, so I value it now. You still own yours, treasure it.” says he, now letting life, and some wisdom, drive him.