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Monday, June 21, 2021

Gujarat: For several mucormycosis patients, recovery means draining savings

In the mucormycosis ward at the 1200-bed facility of Ahmedabad Civil Hospital exhausted and worried relatives accompanying patients are seen taking turns to tend to their loved ones feeling the side-effects of the drugs.

Written by Sohini Ghosh , Aditi Raja | Ahmedabad, Vadodara |
June 12, 2021 1:22:59 am
Gujarat black fungusKherunisha Ibrahim Patel, 53, a government primary teacher from Bharuch, had her upper left jaw and maxillary sinuses removed in a second round of surgery and has been undergoing treatment for mucormycosis since early May. (Express File/Representative)

A Vadodara couple has been saving money for their dream of world tour since their marriage in 2011. They even fulfilled their dream of a home in October last year.

But things took a different turn when the husband, a 40-year-old banking executive, got Covid-19 in April. After a near-death experience with the virus and close to 25 days stay at a private hospital, Rajeev was detected with mucormycosis in early May and has been undergoing treatment at a private multispecialty hospital.

“While it seemed like we were on the road to recovery, another episode of the infection hit us in the first week of June, about two weeks after his discharge and the doctors said that they would have to perform maxillectomy and he has experienced the loss of some neurological functions, which has caused vision impairment in the left eye. The doctors have advised that we should continue periodic scans to determine any new spread,” said his wife.

The family, which has to pay a monthly EMI of their home loan, has spent a big portion of savings on the treatment so far.

“The treatment of Covid19 first and now mucormycosis has totally drained our funds. Not only have we spent the money we had saved to tick off our goals from our bucket lists, but we are actually dreading meeting further expenses of the treatment for the disease. The medicines are so expensive and hard to procure,” she added.

For several other families like this Vadodara couple, the infection has drained them of their savings.

Inside the mucormycosis ward of SSG hospital in Vadodara, at the bedside of every patient is black plastic covers every intravenous bottle and infusion sets to protect the amphotericin-B from being exposed to light while being administered.

Among the several patients — many of whom have brought in their own pedestal fans to beat the humid weather — is a 48-year-old employee of a private company.

The patient said his company has asked him to resign as he has been unable to attend work since mid-March this year.

His brother said, “First our parents suffered Covid-19 and were critical. My mother passed away too. So, my brother had taken leave from work to tend to them. Later, he was diagnosed with Covid-19 and was critical, on BiPAP support, at a government hospital for over three weeks.”

“He barely recovered and joined duty for about five days when he developed discomfort and facial swelling was diagnosed with mucormycosis. He underwent the first debridement at a private hospital but the infection relapsed and the doctors have said that he would have to undergo orbital exenteration,” the brother added.

Kherunisha Ibrahim Patel, 53, a government primary teacher from Bharuch, had her upper left jaw and maxillary sinuses removed in a second round of surgery and has been undergoing treatment for mucormycosis since early May.

Her son, Dr Naeem Patel, says the family has spent over Rs 10 lakh for the treatment. “Our priority is her health at the moment but she might feel the pinch a couple of months later if she is unable to continue teaching due to the disfigurement,” says Patel.

Dr Ranjan Aiyer , Medical Superintendent at SSG hospital and also Head of Department, ENT, says affordability is a huge factor in the treatment of mucormycosis. “The drugs are expensive and the infection, if not cleared properly can resurface… Currently, at SSG, we have close to 40% patients, who have undergone surgeries at private hospitals first.”

In the mucormycosis ward at the 1200-bed facility of Ahmedabad Civil Hospital, where nearly 50-60 patients are currently being treated by the Government Dental College and Hospital on the same campus, exhausted and worried relatives accompanying patients are seen taking turns to tend to their loved ones feeling the side-effects of the drugs.

Among the patients is a 70-year old woman, diagnosed with mucormycosis on May 3, accompanied by her 42-year-old son, a grocery shop owner from Nani Kadi in Mehsana. The man admits that the treatment for his mother’s illness has wiped out his life savings and brought upon him a debt, putting his son’s engineering coaching at a private institution on hold.

“Following a CT scan diagnosis, she was operated on at a private hospital for transnasal debridement, which cost us Rs 2.10 lakh. We shifted to another private hospital in Vastral, where we spent Rs 1.80 lakh on medicines and another Rs 6.55 lakh on 84 Liposomal Amphotericin B injections, costing around Rs 7,800 each. After 14 days of stay, they told us that we should get her admitted at Civil Hospital as liposomal Amphotericin B too was in short supply,” he says.

Ram Khemani (55), a resident of Naroda Patiya in Ahmedabad, had his upper jaw removed on June 5 and has been in and out of hospitals since April 12 when he was admitted to a private facility for Covid-19 treatment.

Sangeeta Khemani, his wife, says, “We spent Rs 10 lakh already during his Covid-19 19 treatment when he was hospitalised for 25 days. So by mid-May when he started having tooth pain and was subsequently diagnosed with mucormycosis, we had no option but to go to a government hospital. He works at a sweetmeats shop and we have had no earning in the past two months and we have exhausted our savings.”

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