Lost causes

Murat, my Karakalpak translator, asks me if I have made plans for this morning.

I call him my translator, but that does not really do him justice. I believe he is fluent in at least six languages and has a degree in international relations. He knows our treatment protocols inside out. By sight he knows each of our patients by name and registration number. He knows who to ring and which strategies to adopt to get things done. He remembers everything I am supposed to remember to do. He makes everything and anything happen. He finds children lost to our programme and knows where to get hot food in the field and tells me off when I make a cultural faux pas. He is the Radar to my Major Burns, the Bernard to my Jim Hacker, the Gromit to my Wallace.

I have not yet made a plan for this morning. He nods his head, saying: “then, there are patients I would like you to see.”

Driving to see patients © Emily Wise

 

We have to strike a pretty miserable deal with our TB patients in Karakalpakstan. If they have multidrug-resistant TB (MDR-TB: TB resistant to our best first line-drugs) or extensively drug-resistant TB (XDR-TB: resistant to our best first-line AND second-line drugs), then their only (though by no means guaranteed) chance of a cure is to take up to eight unpalatable and side-effect-prone drugs for at least two years.

Often, after only a couple of weeks of treatment, patients will develop anticipatory gagging and vomiting, just on seeing the tablets. Or, rashes so itchy they excoriate their arms and legs to shreds. The pyrazinamide can make their joints so painful it is difficult to stand. Clofazamine causes their skin to become discoloured, like an overcooked fake tan, so that the one remaining neighbour who did not already know that the patient had TB, will now guess. Cycloserine can precipitate neurological and psychiatric symptoms such as numb feet, seizures, depression, psychosis and suicidal ideation. It would be an understatement to tell you we are in desperate need for better drugs, and soon.

Furthermore, TB patients have to be supervised whilst they take their tablets everyday by a nurse, usually at the ‘DOTS’ corner of their local clinic. If one day of drugs is missed it is added onto the end of treatment. If two days are missed there is a knock on the door from our councillors. If adherence continues to be a problem the patient may be asked to sign an adherence contract, after which if they continue to miss doses, their treatment will be stopped. Stopped until they are psychologically ready to start treatment again. Starting again at the very beginning, regardless of how many months of treatment they had previously completed.

But what else can we do? Unfortunately there can be no reasoning with Mycobacteria. Seventy-nine percent of our patients who have received TB drugs in the past present with drug-resistant TB. For years and years in Karakpakstan, TB patients were administered the wrong combination of TB drugs for too short a time or were sent home with them and they picked and chose which to take. Even now, despite MSF’s presence, TB drugs can be readily bought over-the-counter: I see Kanamycin (a last hope anti-TB drug in our current arsenal) being displayed in a local pharmacy in an attractive basket at the counter encouraging customers to buy on a whim without prescription.

And not only are poorly-adherent patients jeopardising their own health, but risk passing drug-resistant TB on to their family, friends, neighbours, that bloke they sit next to on the bus and that child they sneeze on in the bazaar. Forty-three percent of our TB patients here have drug-resistant TB even though they have never been treated for TB before. Patients either have to be on treatment and adhere to it or not take it at all – there can be no halfway house.

All we can do as health workers here is try to optimise a patient’s psychosocial situation before they are commenced on treatment, support them and manage their side-effects aggressively with extra medicines. It’s not impossible, it can be done. Overall cure rates for MDR-TB in good programmes are about 65 percent, and we have enrolled 4,000 patients here so far. But I would not wish drug-resistant TB on my worst enemy. Or their neighbour.

The bazaar in Nukus © Emily Wise

 

So, this morning, Murat has requested I see patients who have fallen off the TB-wagon. Our councillors have understandable reservations. Will I be giving them false hope? A brand-new English MSF doctor arriving with a miracle new cure? And when they see that I only have that good ‘ol 20-month regimen up my sleeve it will be another slap in the face.

But I cannot help but feel that even if I cannot persuade the patients to come back to treatment, it is not futile seeing them. I could perform assessments, examine if they are in need of palliative care. How can visiting a patient ever be a waste of time? How can a human be a lost cause?

I could simply tell them that they are not forgotten. Surely that is the humanitarian thing to do? And, of course, a councillor came with us. They are not in the habit of forgetting patients.

We arrive at the first ‘tam’ or house. It is typical for the area: one storey with a flat roof, an indoor courtyard and consecutive large dimly-lit rooms built of dark brown clay bricks, gas-heated and devoid of material clutter. We leave our shoes at the door and gather round a low wooden table (a dastarkhan) and kneel on beautiful rectangular mats of bright fabric.

We are visiting Salamat*, and he is my age. He managed about 10-months of treatment for his pre-XDR-TB before no longer being able to cope with his anticipatory vomiting and ‘defaulted’. His impossibly thin brother – his main carer – Ilyas*, sits by his side. The air and dark corners of the room feel laden with drug-resistant bacilli. For the fifteenth time in the three minutes since we have arrived I feel round my facemask to check the seal.

Salamat says he was happy that I am visiting him but, despite my pleas, no, he will not come back to treatment. It made him feel too awful, he would have no appetite, whilst now he feels fine. He states he sleeps well all night, he is gaining weight, his chest wall, which previously was openly leaking pus, has healed nicely. He has no cough and his breathing is fine. He only chooses to stay indoors because of the cold at the moment.

Have I got this drug-resistant TB all wrong? Maybe he has self-cured? Maybe 10-months of treatment is sufficient for cure? I turn to Murat puzzled. Murat prompts me: “Maybe we should ask his brother how he thinks things are.” And Ilyas looks me dead in the eyes as Murat translates what he says: Salamat continues to lose weight, he coughs all through the day and his breathing makes a strange whistling noise morning, noon and night. A national doctor comes regularly to change the purulent dressings of his chest wall fistula. Another family member is also in hospital with TB. Ilyas must wonder when his own latent pre-XDR-TB will awake. He is watching his brother die slowly. But what else can he do?

Maybe I shouldn’t document such stories in my blog. What is the function of blogging from the field? To advertise MSF’s successes, reassure donors that they are saving lives and persuade those at home so inclined to volunteer to become a humanitarian healthcare worker too? Maybe I should write the happy stories. After all, there are plenty. The patients who tough it out, are grateful for their opportunity of cure and knock back their free tablets and achieve that glorious stamp at the top of their case-file: ‘cured’. I see such cases everyday, queuing patiently at the DOTS corner.

But maybe not this blog, maybe I’ll write about them in the next blog. Today I’m writing about Salamat. So that he is not forgotten.

*Names have been changed to protect anonymity.

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11 Responses to Lost causes

  1. Emily Wise says:

    Thank you all for your very articulate and kind thoughts and for taking an interest in my writing and our battle against TB. Best wishes to you all, Emily

  2. Ali says:

    Dr. Wise,

    Thank you for the blog post. I feel that the most powerful stories, the ones that inspire people to action, are the ones that describe the honest truth of a situation. Hopefully the rhetorical question you stated (“How can a human be a lost cause?”) becomes a call to arms, a motto, for many other humanitarian volunteers working, and aspiring to work, in the field.

  3. Aybek says:

    Thank you Dr.Wise for writing this blog message about that patient. Nice to hear that there are many doctors who can and are willing to help people whom they don’t even know. keep up good work and wish you health and patience in your looking after patients.

  4. ina says:

    As patients we trust that our doctors want what is best for us. However in the end we should decide for ourselves how to move treatments along. Even if that means slowly dying. That does not mean that anyone should be forgotten. Nobody should ever be forgotten. Good job Emily.

  5. Rosalind says:

    Fighting TB is a momentous task and you are part of the solution. Yes, you and MSF are focusing on getting rid of the bacterial cause and no, that’s not sufficient. It’s not that long ago that TB was a major cause of death in the “West” and it was the combination of antibiotics and tackling poverty,overcrowding and malnutrition that turned it into a rarity. ( In 20 years working as a GP in Cornwall I’ve not seen a single case.)
    You’re a doctor, so you’re using the tools of your trade to make a difference. Sadly, the “tools” aren’t all that great,but it’s the best there is. What’s the alternative? Pull out and leave the field to over -the -counter Kanamycin ( who knows what’s actually in it !?! ), chanting and burning herbs?
    Carry on the good work, I take my hat off to you.

  6. Rebecca O'Connell says:

    You write so well, making a distant world and the people you meet seem vivid and close. The issues are recognisable to me from my experience in similar circumstances. It can be frustrating and feel attritional. Keep going….
    Rebecca

  7. Paulette Coelho says:

    Emily
    Never Never give up!!!!
    This is your chance to win em race it with determination and Faith
    This will be your Victory in Life

  8. Elisabeth says:

    It sounds like you are reaching out for input on what is happening there, and rightly so, imho. A blog is great, yet you could reach so many more with a facebook page if you want feedback and/or discussion, and there is a lot of health advocating going on there. As a sponsored medical doctor, you may feel you need to stay within the bounds of what is considered ‘western allopathic’, yet if you are open to easily obtainable remedial therapies, reach out online. My view is that the drugs weaken people more than help, and they need remedies that will strengthen them. There is a video clip on youtube of ayurvedic home remedies, and there are more on there as well. Look on youtube for one titled: ‘Tuberculosis – Natural Ayurvedic Home Remedies’.

    Sounds like you have a real epidemic on your hands. Many blessings on your great and dedicated work.

  9. susan says:

    Thank you for writing! Stay warm!

  10. a pcv says:

    A lot of the duality of frustrations/hopes you write about, I also understand as a peace corps volunteer- sure it’s not the same work you are doing, but I can pass along the advice others have given me: chin up, you do what you can, you do show that you care, and at the end of the day, that’s what’s important. Best wishes your way, and yes, even though this isn’t a happy blog entry, you are still inspiring future humanitarian workers. Thank you for writing.

  11. Jem says:

    Inspirational.com Keep up the amazing work

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