Lesser patients in a pandemic – The Hindu

Whats possibly worse than being infected with COVID-19? Living with a health condition that requires instant or regular medical care, say many who have been struggling to get their chemotherapy sessions, or dialysis, or even a diagnosis of a life-threatening ailment amid the nationwide lockdown.

A nine-month-old toddler with a possible malignant tumour on his spine, a woman in the 17th week of her pregnancy and a 68-year-old kidney patient requiring dialysis thrice a week are among several such people coping with much more than just their medical conditions as the healthcare system fights a pandemic with limited resources.

Whether one is rich or poor seems to matter little in the face of the COVID-19 outbreak as hospitals both State-run and private reel under staff crunch and lack capacity to tackle the contagion as well as other chronic and common ailments. The patients, on the other hand, are grappling with an endless wait for medical intervention while living with the fear of contracting the virus during procedures at hospitals.

Several people staying in night shelters near the All India Institute of Medical Sciences in south Delhi said they are facing a double setback as their medical treatments have been halted and they cannot even return to their villages, mostly located in Bihar.

Among them are Salma Khatoon, whose nine-month-old son Ayaan requires a surgical removal of an aggressive tumour on his spine; Sonu Kumar, 27, who needs an open-heart surgery and injections are available only at facilities such as AIIMS; Sunita Devi (42) and Rekha (28), both breast cancer patients awaiting attention, and Shobha who, after living for three months in the Capital, is still waiting for her cancer treatment to begin.

The doctor told us that my son needs to be operated upon to be able to walk. We made the payments and did the paperwork... we have been here since February, look how much the tumour has grown, said Ms. Khatoon as she showed the growth on the toddlers backbone. We took money on interest for his treatment. What do we do now?

Lal Bahadur Chaudhury, 78, a resident of Samastipur in Bihar, came to the Capital in December last year to get treatment for throat cancer. While his treatment was halted following the lockdown, the eye surgery of his wife, Ramlekha Devi, scheduled for April 24, was postponed indefinitely.

All kinds of tests were conducted and I was undergoing treatment but now everything has been stopped. I was asked to visit the doctor on April 17 but when I went, they changed the date and asked me to come on April 29. I am not sure if I will be able to meet the doctor that day, said Mr. Chaudhury.

Mohammed Rizwan, 55, had arrived in the city from Bhagalpur in Bihar on March 20 for treatment of a tumour in his neck. As all OPD services at AIIMS were temporarily suspended following the lockdown, he could neither get a diagnosis nor a train ticket to go back home. He is staying at his relatives' place now, waiting for passenger train operations to resume soon.

The doctors in my town said I have high chances of cancer in my neck. I came here with my elder son hoping to return in a week after getting the problem diagnosed at AIIMS, but everything is shut now, said Mr. Rizwan.

For those undergoing chemotherapy and dialysis sessions, the lockdown has brought another set of woes with the COVID-19 test being made mandatory before any treatment, regardless of the complete absence of any contact history or symptoms.

These, according to those attending to the patients, have added to the stress of travelling multiple times, providing samples every second week and waiting for sessions as both hospitals and private labs are functioning with skeletal support staff.

We had to pay 4,500 for the [COVID-19] test. The sample collection, however, could be done only in the second half of the day. We had gone early morning for the chemotherapy session but had to return home and then go again in the afternoon and come back. In the process, the chemo session was postponed and is now rescheduled, said a west Delhi resident whose mother is suffering from cancer.

We have been told that she would have to undergo a COVID-19 test every 14 days. While the monetary aspect can be taken care of, the travelling wont be easy for most patients. Weakness of body and immune system is common in cancer and it has made the fear of infection from the extra travelling and hospital visits more worrying, she said.

At east Delhis Dilshad Garden, 22-year-old Kshitija Khanna had to change her hospital because of the lockdown. Ms. Khanna, who lost her father five years ago, used to go to a Karol Bagh nursing home thrice a week for dialysis. Now she visits a hospital closer home in Karkardooma and has also reduced the treatment to twice a week.

My mother, younger sister and I are dependent on our grandfather for money. One dialysis session costs 2,500 and we dont have our own vehicle. A neighbour helps me visit the hospital, said Ms. Khanna, adding that her medicines are also not available in nearby shops and she has to order them online. Earlier, they were delivered in two days, but during lockdown they arrived after five days. Theres a sense of uncertainty.

Kewal Aggarwal, 68, a resident of East of Kailash, suffers from chronic kidney disease and has been on dialysis for the last one and a half years.

My father visits the National Heart Institute dialysis centre every alternate day. We got a COVID-19 test done which came out negative, but someone else who used to visit the centre tested positive and passed away. My father was then placed under home quarantine, said Mr. Aggarwals son Karan, a businessman. Patients at centres like these are facing issues mainly due to lack of adequate technical staff. Another issue is that the third-party administrators of insurance companies are not reimbursing the claims as they, the backbone of the insurance sector, have not been allowed to function. Claims worth lakhs of rupees are pending. While people like me can handle such issues, what about those who dont have resources? he said.

For those whose relatives are already admitted in hospitals, the going has gradually got tougher. My father-in-law, in his late 60s, is in ICU at a private hospital for the past two months after a severe brain injury. Earlier, we were able to meet him at least twice a day, but now our visits have been restricted. Regularly meeting family members helps improve brain activity, which I worry has been impacted somewhat due to our lack of access to him, said a south-east Delhi resident.

The lockdown has been particularly tough for Gurugram resident Manavi, an 18-year-old with intellectual and developmental disability. Her mother Ruchika Sethi, a waste management activist, said Ms. Manavi used to spend four-five hours outside the house daily, going to the market and cycling, to keep herself busy.

Since we have restricted settings now, we use a lot of music and dance and get her involved in housework. It is very challenging and lengthens housework but it is the only way we are able to sustain ourselves in this period, said Ms. Sethi, who runs the Why Waste Your Waste campaign.

An 80-year-old retired professor of zoology, diagnosed with stage-III carcinoma of tonsil, however, has chosen to see the silver lining and is counting on small mercies. At the hospital, he doesnt have to wait long for his turn for radiotherapy. In fact, on many days, the staff seem to be waiting for him. There are no traffic, parking issues, said his son.

Lack of physical access during the extended lockdown has pushed many towards social media. Renuka Rautela, 29, who is 17 weeks pregnant, said when the OPD of the hospital she was visiting shut down, she started contacting her gynaecologist via WhatsApp and phone calls. A resident of Gurugram, Ms. Rautela said accessing good doctors and certain facilities like ultrasound remains largely challenging.

I called five big hospitals for an ultrasound; three of them said they were not conducting it, and one did not have any dates for a month. That put me in a lot of stress. Later, I went to a hospital I would not have visited normally. I was worried about contracting the virus as immunity depreciates during pregnancy, she said.

Reetika Kalita, 25, spotted rashes on her eyelids a few days ago. I thought it would go away but it kept getting worse, said Ms. Kalita, who believed she hand contracted tinea or ringworm. When going to the hospital seemed too risky, she reached out to a dermatologist using a mobile application. Following a text chat, Ms. Kalita sent the doctor photos of the rashes, which were used for her diagnosis.

For 24-year-old Ambika, a resident of Manipur who studies in Delhi, the lockdown brought added stress when her hair loss problem returned. She had been suffering from alopecia (spot baldness) for the past six months and was undergoing regular treatment at a clinic here.

Fearing contracting the virus and in absence of public transport, she decided to ring up the clinic, which then set up a video chat with her doctor. The doctor assessed her condition and wrote a prescription. Ms. Ambika then made the payment for the consultation through an e-wallet and ordered the medicines online. She said hair fall has stopped now.

Saundarya Srinivasan, 29, from Ghaziabad, has had a congenital heart condition since she was six months old. With two surgeries behind her (at 6 and 23 years) and a great deal spent on medication over the years, she and her family were devastated to find that her aortic valve was 70% damaged. I asked my mother and brother if they would be open to the idea of crowdfunding, said Ms. Srinivasan. They told her to do what she felt she needed to, and Ms. Srinivasan raised 11 lakh in about 10 days.

Her surgery was fixed at Medanta The Medicity, Gurugram, but as the number of COVID-19 cases started increasing, the family had to shift the date twice. I would have had to ask my friends to donate blood, but I didnt want to expose them to the virus, said Ms. Srinivasan. For her family though, it was a double-edged sword. They were nervous about going to a hospital, but also about delaying the surgery. Finally, her surgery has been fixed for May 15. I am in a bad state, and I really need to do this, she said. Its a pandemic we just dont know how long it will last.

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Lesser patients in a pandemic - The Hindu