It’s around midday as I wander through the maze of dark, grey corridors in Bir Hospital in Kathmandu. Outside it is busy and colourful like a bus station as people sit crammed together on covered benches as if they were waiting for a journey to commence. But they have all arrived from ‘the village’ (the collective term for rural Nepal where over 85% of the population lives), potentially many days away, to get treatment or to accompany family members. Where does everyone sleep?
I am looking for bed number one in the ‘special ward’ where transplant patients wait. Well, there is only one patient at the moment. A sign points to the visitors’ waiting room. Through the window I see his family sitting patiently in this small, bare room. They smile their best smiles when I enter, and I sit down with them and ask where their son is.
Dil Badhur Shahi looking pensive as many Nepali’s do on photographs
I met Dil Badhur Shahi, a 28-year-old journalist, in May this year as I was trying to burrow through some bureaucracy to get a journalist’s visa to extend my stay in Nepal. While waiting for several hours on a collapsing beige couch for a bureaucrat to return from lunch, we talked a little in his ramshackle English and my shameful Nepali. When all the talking that could be done was done, we exchanged business cards and said goodbye, both giving up on the chance of the bureaucrat’s return.
Eldest daughter Monika
Youngest daughter Melina
Several weeks later he called me asking to meet up and we met next to the Bhimsen tower, a white phallic structure in the heart of Kathmandu which, at 50m tall, pokes just above the smog and allows you a breath of almost clean air (which in itself is worth the ticket price) as you gaze over sprawling, choking Kathmandu. I couldn’t really remember who I was meeting until I saw his face. I’d only agreed to meet up with this caller because the mention of a ‘kidney problem’ awakened my curiosity.
I’d once been involved with a friend’s project called Tackers, which brought children with organ transplants together for a week in Switzerland. There I learned a little of the world of organ transplantation: the emotional rollercoaster ride of hope and heartbreak, the patience and resolutely positive outlook required; the daily, colourful heaps of pills to be swallowed; the incredible level of expertise involved and accompanying cost. It could only be interesting to see how the situation compared in Nepal.
Over a milky tea we talked and I learned that Dil Badhur means ‘brave heart’; he’s from just west of Pokhara, where he runs a small district newspaper; that he has two young daughters, Monika and Melina; and that he has kidney failure from undiagnosed hypertension. Life had changed from being an accepted normality to being organised around half-day dialysis sessions twice per week in Kathmandu and finding the money to pay for it. He didn’t laugh that much but given his circumstances, I could see why. “Can you help me?” he wanted, not unreasonably, to know.
I agreed to try, but since then I am ashamed to say my efforts to help have been half-hearted at best. While I wished him well, he seemed to be in a hopeless situation. But then I was discounting his will to live and his will to not leave his young family fatherless.
The bottom line is of course that kidney failure is untreatable. Dialysis is needed, ideally, three times per week just to keep alive. But while dialysis maintains life, it kills financially. It costs around 20 Euro per session and perhaps up to 30 Euro by the time lab tests, equipment and consultations have been taken into account. There are very few jobs in the entire country paying salaries that could sustain these outgoings for long. These fees get paid from savings, from collections among friends, family and community and eventually selling any possessions, property and land owned.
The only escape from dialysis is a kidney transplant. Previously, the nearest hospitals performing transplants were in India and the operation would cost upwards of 8000 Euro that is, if you have a compatible kidney lined up to receive, or someone to buy one from. For many this amount poses an insurmountable barrier and this is the real tragedy.
The top dialysis organisation in Nepal is the National Kidney Centre (NKC) headed by chief Nephrologist Dr Rishi Kumar Kafle. He was an inspiring man trying to save as many lives as he could in the face of impressive adversity: scheduled power cuts of up to 16 hours per day; getting enough clean water in dehydrated, polluted Kathmandu; a general lack of funding and the difficulty, universal to all patients, of affording to stay alive. He is well aware that not many of his patients will ever get a transplant, but some do and that’s the point – from his centre around two people per week have been making the journey to India.
The head of nursing at the NKC told that a number of her staff had resigned, as they can no longer emotionally handle the heartbreaking stories patients routinely have to tell. They’ve funded their own dialysis for as long as they could and when all of the savings were gone, valuable possessions pawned and the family’s house and land were sold, then their only remains the inevitable and a literally impoverished family left behind.
The hurdles don’t stop at a successful transplant. For those who can find the means to get a transplant, there remains the life-long need for immunosuppressant drugs to stop the body rejecting the foreign kidney. The cost of these Swiss or Japanese drugs can, depending on which combination of drugs is prescribed, outstrip the cost of dialysis. While generics are available from India, the cost can still reach 200 Euro per month. To put this in perspective, that’s more than the monthly salary of Nepal’s only qualified transplant surgeon. There’s certainly work to be done here in the medium-term to reduce costs through tax exemptions and bulk purchases.
Several days ago I was surprised to get a text message from Dil Badhur saying that he is booked in for his transplantation operation in the government-run Bir hospital. His wife, Indra, will be the one donating the life-saving kidney. Nothing is impossible, it seems, if you try hard enough.
The cost of the operation is a bargain, if you can call it such, at 3,500 Euro. Just 1,000 Euro of this is the hospital fee while the rest pays for medical equipment and state-of-the-art drugs for during and the days immediately after surgery.
He’s already paid as much as he has been able to raise through contributions from family, friends, his journalists’ union and his home community. Still 2,500 Euro has to be found, and it will be.
For most kidney failure patients in Nepal, as time rolls on, the final outcome will be either death, or financial ruin and likely both. For some though the outcome will be life, despite the unrelenting, exhausting financial burden. Without insurance to fall back on, survival becomes a question of ingenuity, resourcefulness supported with, if some luck is there, others’ goodwill.
I am passing the hat around. I’ll contribute how I can, and I hope if you can make a small contribution, then, with enough people’s help then this life, and the family it is part of, can be prolonged.
Thank you. I’ll keep you posted on how it goes.
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