PRASHANT has advanced interstitial lung disease (ILD), my sister-in-law Smriti informed me on April 20 last year. My brother (54 then) had been losing weight and experiencing fatigue and gastrointestinal reflux.
On a visit to India from Singapore, they consulted a pulmonologist in Jaypee Hospital, Greater Noida, who diagnosed ILD. Googling it, we were devastated to find alarmist descriptions of an irreversible condition.
While we struggled with this knowledge, Prashant, an ex-fauji and security practitioner, decided to fight the condition and use his training, optimism and discipline, refusing to even refer to it as an illness.
After a few weeks of extensive tests to find a reason behind contracting ILD (an umbrella term for a large group of diseases that cause scarring or fibrosis of the lungs), the doctors said it was a case of idiopathic ILD, with environmental factors as a contributor. He was put on medication and asked to be regular with pulmonary rehabilitation, which comprises special exercises to improve functional lung capacity, dyspnoea (laboured breathing) and quality of life.
In October last year, he was cleared to return to Singapore and also told to register for a double-lung transplant in India since the waiting period is less. He decided to return in January and get himself registered. However, his condition worsened in November and an OPD consultation in Singapore resulted in an ICU admission.
Prashant had multiple complications. After being in hospital for a fortnight, one night he got acutely desaturated, requiring emergency intubation. I was in Japan when I got a call from Smriti. I rushed to Singapore with my parents. Family members and friends kept a 24/7 vigil over the next few weeks.
A multidisciplinary team of doctors told us to take him to India to a hospital with an ICU, since he may not be fit for a transplant, hinting that it may be time for an end-of-life conversation with him and his family. They also said it would be easier to get a transplant in India and advised us to consider South India, where path-breaking work was happening with good results. He was taken in an air ambulance to Chennai’s MGM Healthcare hospital with a high success rate of heart, lung and kidney transplants.
Dr Apar Jindal, clinical director, lung transplant, said Prashant had a 60 per cent chance of making it to the transplant stage and being relatively young, deserved that chance.
The next four months were spent on treating infections, including the complex nontuberculous mycobacterial (NTM) infection, building nutrition and increasing his weight. We rented a house next to the hospital with an ICU nurse. On April 24, we received a call late at night that a donor had been found. Dr KR Balakrishnan, director (institute of heart and lung transplant & mechanical circulatory support), performed the surgery.
It has been four months post-surgery now and every day is a new battle though victories outnumber the setbacks. Three months later, on July 24, the feeding tube was removed, enabling him to start a semi-solid diet. The tracheostomy tube was removed just two weeks back. Prashant is now able to eat and speak, post vocal cord palsy. After nine months, he is, at last, without tubes and external devices strapped on his body.
The family is deliberating about staying on in Chennai since the first-year post transplant has a fair chance of rejection, though the hospital has tie-ups across India for post-operative care. Dr Deepika Ramachandran, associate consultant at MGM hospital, says, “Earlier, there were complications but now life expectancy of lung transplant patients has gone up to 85 per cent.”
Ever the fighter, Prashant looks at this life-altering experience as an opportunity. He says, “I want to do something for those not as fortunate as me.” For us, he’s an inspiration.
Catching ILD early
- See a specialist if there is shortness of breath, altered ability to do normal activities and most important, if a cough persists for two weeks.
- Those above 55 years of age must take the flu and pneumococcal vaccine; also, those below 55 but suffering from any lung disease or are immunocompromised should also take this vaccine.
- At risk are men below 55 who are smokers; and those who had chronic tachypnea of infancy (a paediatric lung disease).
- Untreated histoplasmosis (fungal infection of lungs caused by histoplasma capsulatum, a fungus that occurs when exposed to pigeon droppings) can lead to progressive pulmonary fibrosis. It can result in respiratory and/or cardiac failure and recurrent infections.
- Monitor ILD progression and register for organ transplant in time.
Inputs by Dr Deepika Ramachandran, associate consultant, MGM hospital, Chennai
After the transplant
- Protection from infection, exposure and viruses.
- Strict adherence to timing of medication, especially immuno-suppressants.
- Regular monitoring of complete blood count, tacrolimus levels and other indicators.
- Maintain record of food intake, reactions if any, spirocheck readings, BP, temperature, blood sugar.
- Be in touch with transplant team and specialist doctors.
- Gradual resuming of physiotherapy.
- Be watchful of secretions, discomfort/choking while eating.
- Have an experienced caregiver.
- Patronise a trusted lab for tests.
- No raw and uncooked food or with preservatives.
- Do not miss prescribed blood tests.
- Don’t disregard dietician’s advice; take regular consultation.
- Do not ignore any pains, skin colour changes or drop in urine output.
- Do not meet an individual with any infection.
- Avoid those who have taken an oral polio vaccine.
- Don’t take over-the-counter medicines, self-medicate or change the prescription.
- Do not disregard doctor’s advice on drinking, smoking, lifting of weights and sexual activity.
— The writer is a Delhi-based independent journalist
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