'What if the person next to me has COVID?' Harsh, a young 25 year old entrepreneur has this thought at least twice a week, every week.
But for Harsh taking the risk to make his way to a hospital week after week is a matter of survival.
It’s not just those who are infected with the virus that have been impacted by the pandemic. COVID-19 has also left a trail of collateral damages that are seldom accounted for.
For kidney patients, getting dialysis has been a weekly battle on many fronts since the pandemic began.
Journalist Somya Lakhani tweeted this about the heartbreaking circumstances that led to her uncle's death,
From the constant looming fear of catching COVID every time they go for a session, to not having trained technicians available to carry out the procedure, to now, delayed RTPCR test reports, the pandemic has posed serious roadblock for kidney patients on dialysis.
'All hands on deck for COVID, but what about us?'
Vasundhara Raghavan, the CEO of Kidney Warriors Foundation, and kidney donor to her son, speaks of instances in Mumbai where dialysis patients were faced with a shock when they reached their dialysis centre.
“Their centre was converted into COVID hospitals and these patients were displaced, having to find other places that would take them on such short notice.”Vasundhara Raghavan, the founder of Kidney Warriors Foundation
"We get calls and messages speaking of similar situations in other cities as well, but we aren't really able to help them," she tells FIT.
The overcrowding in hospitals and the streamlining of resources to COVID treatment has also meant a shortage of staff.
"Because of being short-staffed they often end up having to make do with untrained technicians who don't know how to work the machine or insert the fistula correctly," she says. This can make an already dreadful experience all the more painful.
A Weekly Battle
Every dialysis patient puts themselves through the risk of being infected multiple times a week to get their life-saving treatment.
A person requires dialysis treatment when their kidneys fail to work as they should, and toxins start accumulating in their bodies as a result.
Speaking to FIT, Dr Vinod S Dibbur, Consultant, Nephrology, Fortis Hospital, Bangalore, says, "A person with kidney failure will need dialysis at least twice a week, and just coming into the hospital and going home safely is a major challenge for these patients."
“Kidney patients also have other associated ailments which makes them vulnerable to getting any kind of infection, especially COVID.”Dr Vinod S Dibbur, Consultant, Nephrology, Fortis Hospital, Bangalore
To be Caught in a Perpetual State of Anxiety
"There is a huge mental stress factor for people undergoing dialysis, even normally, but especially in times like these," says Harsh.
Sejal, who has been on dialysis for fourteen years now says, "all of us are scared, but we have no choice but to take the risk and visiting hospitals every few days.
"We have to take dialysis to survive, there is no other way," she adds.
“I see the other dialysis patients around me, and there is a sense of anxiety and helplessness in everyone. They’re just not sure where all of this is going to lead them.”Harsh
Harsh also talks about the mental distress of having to go through the painful treatment all alone. "Earlier, attendants were allowed to be with the patients, but now because of the COVID restrictions they aren't any more," he says.
“It might seem like a small thing, but when you have four hours of lying on a bed and being connected to a machine with pretty much no mobility, having someone with you can make a whole lot of difference.”Harsh
There is also a disparity in the the extent to which the patients are able to protect themselves.
Harsh brings this up, saying "Many don't have the kind of access to education, resources and even nutrition that could help them protect themselves better."
All these things culminate in to a looming sense of helplessness.
'The Real Challenge Begins When They Get COVID'
"If patients on dialysis do get severe COVID, we do have ICUs with dedicated dialysis machines and technicians for them. But not all hospitals have this facility," says Dr Dibbur.
"Being immunocompromised, they have a tough time fighting COVID along with the other problems they have, and many end up succumbing to COVID," says Vasundhara Raghavan. "The body can only take so much."
Added to the physical strain is also the financial strain on the patient.
"Such facilities can be very expensive," says Dr Dibbur. So can the cost of multiple RT-PCR tests, arranging private transportation, and dealing with the other complications that COVID might bring.
A Unique Challenge
A bigger challenge for the hospital staff is navigating dialysis for patients with mild to moderate symptoms who still need to come in for dialysis.
Although hospitals and dialysis centres have been trying to keep COVID positive patients separate from the others, as cases continue to mount, it's getting harder and harder to do so.
“This is a unique challenge because we cannot dialyse them with the general population but they’ll need to use the same machines in the same spaces.”Dr Vinod S Dibbur, Consultant, Nephrology, Fortis Hospital, Bangalore
To tackle this, Dr Dibbur speaks of how they have set aside specific hours (usually after hours) especially for COVID patients who need dialysis.
But this comes with its own challenges.
"I remember this one time my session was to get done at 9:10, and the COVID patients' shift was to start at nine," says Harsh, "that's when it really hit me, how real this was."
He talks about how his facility used to have two different wards for regular dialysis patients and COVID positive patients who needed dialysis.
"But now because the number of dialysis patients who have COVID has gone up so much, the same dialysis units are being used for everyone in shifts," he says.
"If your dialysis runs late by even half an hour, you have two choices, either you cut your dialysis short, or take the risk of getting it done with other COVID patients in the room."Harsh
"Imagine the situation where you're already in a physically and mentally vulnerable state, and then you don't even get a private space for your dialysis. You have to get it done in a unit with 20- 30 other patients who could also have COVID," he adds.
According to Dr Dibbur, facilities may also require patients to wear PPE kits when they get their dialysis done which can be extremely uncomfortable when undergoing a painful treatment that goes on for hours.
And the hospitals that don't have such facilities are refusing to take in dialysis patients who have COVID because they just don't want to take a chance.
“We too have had to turn away patients sometimes because of the sheer load COVID dialysis patients.”Dr Vinod S Dibbur, Consultant, Nephrology, Fortis Hospital, Bangalore
Vaccination is the Key
Another big roadblock that has further prolonged the hardships that these patients have been facing for the last year and a half is the phased vaccination policy that the government rolled out.
In the second phase, when the vaccines were open to people with comorbidities, it came with a fine print— an age limitation of 45 and above. Even when it came to those over the age of 45, only dialysis patients with end stage kidney disease made the cut.
This policy left a large chunk of equally vulnerable people with comorbidities under the age of 45 out to dry for months while they waited their turn for the vaccine.
“When the vaccine came out we though we might get some relief, but we were kept in the same rank as normal people, even when our patients have a low immunity and are going to hospitals thrice a week at a great risk. “Vasundhara Raghavan, founder of Kidney Warriors Foundation
Through the grainy connection of the phone line, I can sense Vasundhara's frustration as she says this.
"At the time, as a foundation, we felt completely helpless, like we weren't doing anything or bringing any change," she says.
But now that vaccination is open for everyone over the age of 18, Dr Vinod S Dibbur advises patients to get themselves vaccinated as soon as they're able to.
"It doesn't matter which vaccine they're able to get. Getting vaccinated is the only way forward for dialysis patients to protect themselves."Dr Vinod S Dibbur, Consultant, Nephrology, Fortis Hospital, Bangalore
In spite of the vaccines being now available to them, the road to relief is a long and winded one.
"They may have to wait till June before they can get the vaccine," says Vasundhara who doesn't sound very hopeful.
There also other things to consider, like how "they could also get infected while they wait in queues to get the vaccines."
Not All Bleak: How They Manage to Cope
For Harsh, its thinking positive and keeping his spirits high that helps.
"Four out of five people i know have COVID right now. My entire family has COVID, I'm the only one who doesn't. Considering I'm the one that has comorbidity, I should be freaking out right now," says Harsh with a laugh.
“I personally feel like trying to stay calm helps a lot. It might sound cliche but I believe If you can take control of your mind, everything else will get easier”Harsh
Vasundhara Raghavan speaks of the ways in which they have moulded themselves to fit the circumstances.
"We now conduct webinars and online sessions where nephrologists are able to guide patients in the support group on how they can manage the illness during this time," she explains.
And then there are the good samaritans.
Sejal talks about the first few months of lockdown and how challenging that was.
“With no public transportation, traveling to the dialysis center became tough. We don’t have the energy to walk down 500 meters to a bus stop, especially after the session,”Sejal
"For weeks I managed somehow by hitching a ride with other patients. But that has its own risks. Finally, a kind auto driver agreed to take me to dialysis and bring me back. And he still does!"