Esther Aalbers | , New Zealand

“Since I was a child, I wanted to become a nurse.”

Esther Aalbers has dedicated 10 years of her career as a nurse for the maritime efforts of Youth With A Mission (YWAM). Inspired by their slogan “Our hands, God’s heart,” Esther pursued a position as a medical administrator with the organization’s New Zealand branch. Initially planning on a yearlong commitment, she spent seven years working out of small clinic on a boat, bringing healthcare to places like Papua New Guinea, Fiji, and Samoa.

After her time in New Zealand, Esther moved to YWAM’s UK-based efforts, focusing on Albania and Romania. While living in the UK, Esther started having a persistent cough. She was a little tired, a little short of breath, but nothing severe enough to cause her real concern. However, after a few bouts of bronchitis, the doctors began to suspect some sort of autoimmune disease. Surgery on her lung, however, offered a different diagnosis: tuberculosis (TB).

Knowing that TB is treatable, Esther was relieved not to have a more chronic condition, however at this stage a large part of her lung was necrotic. The doctors removed a third of the lung and Esther was on a lung drain for 17 days, much longer than the usual duration. Treatment for TB lasted sixth months, with daily tablets, one of which being a struggle to swallow, due to its large size.

She believes her time in Papua New Guinea exposed her to the bacteria infection, and even though she knew there was a risk, she, like many healthcare workers who put themselves at risk in their daily work, explains, “I guess in the back of your mind you know you can get it but you think you won’t.”

Esther explains that, as a nurse, you expect exposure to the infectious diseases prevalent in the areas where you work, like dengue or malaria, which she never contracted. She sees her infection, treatment and recovery as a natural result of her work. A vaccine offering protection from these diseases, especially TB, would “save a lot of people a lot of hurt, and a lot of death as well.”

Her experience as a patient reinforced the power of compassionate care in her line of work. On the other side of treatment, she better understands why patients struggle with taking the daily pills, saying that “when you have to do it yourself and the tablets are so big, you realize it’s not always an easy thing to ask. Hopefully it makes me a bit more of an understanding, compassionate nurse.”

Now cured, Esther describes that she didn’t know she could feel so healthy, having grown accustomed to the tuberculosis symptoms that went undiagnosed. She encourages anyone with possible TB symptoms to get them checked, because her general health, and the gradual progression of her symptoms, masked the seriousness of her condition.

Esther offers a message of perseverance to those currently undergoing the treatment, and says “it’s so worth it to get your life back. You do have to have a bit of discipline but you actually can do it and after the six months you really do get your life back.” 

Dr Devola Philips | Cape Town, South Africa

A Doctor's Struggle as a Patient

When Devola Philips, a 34 year old mother of two, tells her tuberculosis (TB) story, she describes 24 months of hospital admissions and surgical procedures. As a neurosurgeon, she uses terms like “endobronchial stent migration” and “exertional dyspnea” and “pneumonectomy.” What that meant was shortness of breath that hampered her daily life to the point that she couldn’t work or care for her kids. It meant symptoms that got worse with treatment and adverse reactions to drugs. It meant 22 tablets and daily intravenous treatments. It meant eventual surgery to remove one of her lungs. So when she describes her ordeal as “really tough” that seems like an understatement and treatment as a “torture in and of itself” that hardly seems an exaggeration.

Dr. Phillips contracted endobronchial multidrug-resistant TB (MDR-TB) during her ICU rotation as part of her neurosurgery program. Her symptoms began in December 2012, but she was not diagnosed with TB until February. Furthermore, she wasn’t diagnosed with drug-resistant TB until that May. “You feel like it’s the end of the world, you’re going to die. You’d rather die than go through the process.” However, after a two year struggle, Devola has beaten TB.

She’s returned to work as a neurosurgeon, but still faces challenges as a TB survivor. The loss of a lung means functional limitations, as well as the threat that any reinfection or reactivation to her remaining lung could be fatal.

Like many TB survivors, Devola shares her story to offer hope to those currently struggling with the disease and treatment. She believes that her experience might “change someone’s outlook to see: ‘Ok, this isn’t the end of the world.’ Often times I felt like that. I felt like throwing in the towel on a daily basis.”

As a healthcare worker, Devola shares her story as a case for better practice of preventive measures, so that others will protect themselves when coming into contact with patients, especially in risky procedures. “That’s how I got infected – trying to intubate a patient in ICU who came in. I didn’t take a minute to protect myself and put a mask on. It resulted in me getting the disease.”

Without standardized and rigorous implementation of control measures, Devola reiterates that prevention is better than cure. What would an effective TB vaccine mean for her work? She “can’t even begin to express how that would change the life of patients, as well as healthcare workers.” Knowing the nature of TB, and without an effective vaccine, she explains that she’s “afraid every single day going into a hospital. And not even just a hospital, just general society. Every time someone coughs.”

Her first-hand experience helps her better understand patients, especially those who default on treatment. While previously as a physician, she often focused on treating the disease rather than the patient, “not realizing that it’s a struggle to actually endure taking these multiple drugs. And not just taking the drugs but the side effects associated with the drugs, in addition to the TB itself.” As a healthcare worker, she is now better able to sympathize with patients, an experience she describes as humbling.

“I always say that going through the [TB treatment] process is like roller-skating uphill. It is a tremendous battle, but you can beat, you can get through it. Don’t give up. You can resume a normal life following that. I’m back at work. I continued in my training. I am an exam away from qualifying as a neurosurgeon. Just don’t give up. You can live a full, functional, fulfilling life following TB.” 

Andrea von Delft | Cape Town, South Africa

When TB Is a Family Affair

Andrea von Delft, a physiotherapist based in Cape Town, South Africa, and advocate for TB Proof, is no stranger to tuberculosis. She worked in TB hotspots for her community service year, and closer to home, both a cousin and her sister-in-law survived the disease. Despite this, when her husband, a healthy 30-year old doctor, went for routine TB testing, she never suspected TB was in the cards for him, too. 

Around World TB Day, TB Proof was telling healthcare workers, “You should get tested. You should be sensitive about your risk!” So my husband, Nielson, agreed to get a test, just routine screening. It was 10 o’clock on a Thursday evening and the phone rang: “Sorry to bother you, Doctor, but the sputum sample you sent in is positive.” We were sitting on the couch close to one and other and in that moment this chasm of separation started. We knew what was going to happen now: the testing, the stress of whether he has drug-resistant TB, and a sense of “I’ll see you on the other side” because of the isolation. He moved to the outside flat. Whenever he came into the house he wore a mask. Whenever we had meals we ate outside, even if it was cold. If it was raining, we were sitting with umbrellas.

Nielson went for two more Gene Xpert tests, to confirm his diagnosis. He gave weekly sputum samples to determine if treatment was working. After about 6 weeks, he still hadn’t culture converted, which sounded some alarm bells. He was still in isolation, still wearing the mask. It felt like we were having the biggest fight of our lives for 6 weeks because there was no physical contact. It was really difficult.

We did extra testing. But TB treatment has no set regimen. There’s no recipe. It’s still an art treating the disease and dealing with the drug interactions. After about 8 weeks without culture conversion, it was discovered that he wasn’t being optimally treated! So we added another drug and a week later he converted to no longer being actively infectious!

The side effects of TB treatment were brutal. Nielson got severe tendonitis; he almost couldn’t move. Even getting up off the toilet seat, he was like an old man. He slept. A lot. He could take an afternoon nap for 3 hours, get into bed at around 8 again, sleep for a long time, and then get up still feeling like he needed to sleep some more. He was on this intensive phase of treatment for nine months. Seventeen tablets, every day. I tasted the moxifloxacin; it’s vile! I’ve never tasted something so bad in my life before! He had to take one and a half, so the one was fine but the half you have to break is not coated at all and it was terrible.

I saw a change in my husband. We’ve been together for 11 years but those nine months felt like I was living with a stranger. Just small things. He wasn’t as sharp. Whenever we eat out, he loves to work out the 15% tip in his head, but he just could not do it at all. He would go buy groceries, come home, put them down and forget. It was weird. I found it very difficult speaking to him about it because he didn’t know it. Even that is isolating in itself, because I’m experiencing one thing and he’s going through another. He’s really a lot better now that he’s off the treatment, but I wonder if he going to be himself again. Nine months is a long time. There are so many additional dimensions to suffering with TB.

In South Africa, the perception is that TB is out there in the rural townships. It’s there where HIV is, it’s there where poverty is, it’s there where malnutrition is. Niels was working in a private hospital normally associated with low TB burden. But TB can be outside of the conceptual boxes that we’ve put it in. Because it’s airborne, we don’t know where he picked it up or why it became active. I was the one working and studying in a high TB setting, with MDR and XDR patients! But I tested negative. Nielson was just a healthy young guy.

I started out as a student, knowing about TB but not enough, especially not about protecting myself as a healthcare worker. I began working with TB Proof before this whole experience, but it’s definitely given me a lot of insight. Because we were doing educational sessions with the students and a lot of advocacy work around World TB Day, I was telling the people that anyone can get TB – and literally a week later I was living that.

Anyone can get TB. That just hit me between the eyes. I was generally thinking, “it’s out there.” But I was sleeping with TB in my bed! That is how close it got to me. I think telling these personal stories is invaluable because people don’t get it, until they GET it. We’re trying to educate healthcare workers because that’s our main target, but also the communities.

My husband has finished his treatment but he’s going back into the hospital where there is TB. It’s not the patients that come for TB treatment. A lot of the times the patients come in with a broken leg, but they could still have TB. But because the broken leg is such a priority everything else falls of the table. My husband works with the airways, intubating and extubating patients, coughing, right there in his face.

There are some strategies that you can employ to protect yourself. I go into the hospital and I try to be as safe as possible for myself, but also for my patients and also then for my husband and this risk of me bringing something back home. In my dealing with patients I try to be a whole lot more understanding, if they’ve been put in isolation. Empowering the patient, instead of isolating. Giving them that feeling that they’re actually doing something great, because they are, instead of stigmatizing and isolating them.

If we get an effective TB vaccine, I’ll be the first in line. It will relieve some of the burden of helping someone else, but also for myself, for my husband or friends or people I come in contact with, even the next patient I see. A TB vaccine would change the face of the epidemic, just to have a safety net, especially for doctors and nurses working in high TB settings. You could spend more time with people because sometimes the patient you want to spend the least amount of time with actually needs the most amount of support. I’ll be first in line for that!

Rajesh | Himachal Pradesh, India

As a programme manager of TB control programme in Kanga, a hill district in North India, I was appalled with the suffering. To add to the woes there have been disruptions in treatment of MDR TB cases by supply chain failures.

Many patients were without PAS and did not buy from market too. Time and again we received medicines without one key drug or another. We lacked funds in the TB Programme to buy medicines.

I took up the matter at various levels, like patient welfare committees of hospitals to plug this supply gap, when it dawned on me that government procedures are too cumbersome for timely access to treatment.

I put an appeal on Whattsapp to my Rotary friend, who circulated it further and within minutes I had calls of commitments of support. This enthused me to further invite private philanthrophists to support the cause. Now we have been able to prevent treatment disruptions in over 70 MDR TB patients through community support from not only locals, but friends and supporters as far as Mumbai.

The medicines received are worth about USD 3000 are a tremendous support. I place on record my heartfelt gratitude for all who have extended support in this time of crisis. We are also looking for support for the orphans and widows, to empower them, and this enablement will act as a voice of the programme. We are looking for nutritional support for MDR TB patients, too.

-Dr RK Sood

Cynthia | Texas, US

I am fortunate, I am in the US where the incidence of active TB is low; however, I was infected in 1982 at Baylor College of Medicine. I was working with children with drug resistant TB and children that were hospitalized due to noncompliance to their treatment plan.

Luckily, 6 months of INH treatment was all I had to do. Although my story is rather benign and the disease in the US is much less prevalent than in developing countries, it does demonstrate that even in highly developed countries TB is still a threat and with the convenience of global travel will continue to be a threat to all countries.

I have been involved vaccine development for over 30 years and certainly understand and appreciate the impact of effective, well tolerated vaccines. TB continues to be a disease area in need of improved vaccines. I congratulate Aeras’ on their work in this area.

Dr. Selenge | Ulaanbaatar, Mongolia

Hi. My name is Dr. Selenge. I first heard about Aeras’s #TBunmasked campaign a few months ago. They asked me to share my story. I’m asking you, can you share yours?

Some background: I’m an anesthesiologist in Ulaanbaatar, Mongolia and I’m on the front lines of the tuberculosis epidemic. I’ve seen the ravages of TB first-hand with patients. But a less-discussed problem is how the TB crisis is affecting, and killing, healthcare workers.

In 2010, a colleague of mine, a doctor, contracted MDR-TB. While he knew the risks of treating TB patients, he was still quite upset when he got the news, as was I. He had a family. Children. Multiple generations living together in one house. He underwent treatment, but after battling the disease for nearly two years, he passed away.

Since my friend’s death, there has been more education on the use of protective equipment, such as masks, germicidal lights and proper ventilation. Staff also undergo regular medical checks, including x-rays. But more must be done.

The first step to solving the problem of tuberculosis is making sure we know how it affects healthcare workers like my friend.

Please, can you take a few minutes to share your TB story at the link below? Whether you’re treating TB patients or are inspired to advocate for policy change, we want to hear from you. The world needs to know what’s happening on the front lines of the TB epidemic.

Deka Motanya | NY, US

After completing my undergraduate degree, I worked as an AmeriCorps volunteer in homeless clinic in downtown San Francisco. My tasks there included mental health intake, HIV testing and counseling, diabetes nutrition instruction, and performing the functions of a medical assistant.

Before starting, I had to submit immunization records and proof of a negative PPD test in the last 30 days. I worked 50 hours a week and much of that time was spent in direct patient care. After about 10 months when I was applying for full-time positions at UCSF, I had to have another PPD test. It came back positive. They suspected that I was exposed while working in the homeless clinic. I had a chest X-ray which came back clear and went back to work. I figured there was little chance that I would develop TB.

About 1.5 years later, a doctor convinced me to take medication to further reduce my chance of ever developing active TB. My mother also thought that was a good idea because she says I’ve always gotten sick easily. I took Isoniazid every day from January through September 2007. I continued to work in the health field for a while so having a positive PPD was inconvenient and expensive. I had to pay for a chest X-ray every year.

I’ve had unexplained night sweats for the past few years. They come and go and no clinician has an explanation. I often wonder if it is connected to my TB exposure.

Pat Bond | Western Cape, ZA

My name is Pat Bond, and I am a registered nurse who was working in a private dialysis unit in Cape Town, South Africa when I contracted MDR TB in 2010.

I was initially diagnosed with a lung infection, and treated with antibiotics and a corticosteroid inhaler. My health did not improve, but I continued working at the unit. In December, I began having night sweats and had more chest X-rays and a TB skin test. That was the last day I worked at the unit.

The X-ray showed TB in my right lung and the skin test reacted immediately. I was very concerned as only 2 days previously I had been in a car traveling for over 4 hours with my Mom, son and his girlfriend, to have Christmas lunch with my daughter in Langebaan. Fortunately, nobody else was infected.

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Cristina | Marikina, Philippines

My name is Cristina. Just like how I introduce myself every time we have trainings for healthcare workers: I am a hospital nurse, who contracted MDR-TB and then turned TB advocate and a training specialist for programmatic management of drug resistant tuberculosis after completing almost 19 months of treatment.

Most of my entire career as a nurse has been spent as a hospital volunteer; not being paid for my work, unable to eat for more than 8 hours because of my duty, tired, with not enough time to rest because of a shifting schedule, not having enough safety equipment to protect myself while on duty and at risk of contracting infectious diseases.

In 2011, I was diagnosed with tuberculosis. I had to resign from work due to fear of not being able to regain my previous healthy state and the fear of being rejected by my coworkers if they found out that I had tuberculosis. I underwent and completed treatment for 6 months (Category I TB). Three months after, TB signs and symptoms started to manifest again. That time, I was diagnosed with multidrug-resistant tuberculosis.

Most of my entire career as a nurse has been spent as a hospital volunteer; not being paid for my work, unable to eat for more than 8 hours because of my duties, tired, with not enough time to rest because of a shifting schedule, not having enough safety equipment to protect myself while on duty and at risk of contracting infectious diseases.

In 2011, I was diagnosed with tuberculosis. I had to resign from work due to fear of not being able to regain my previous healthy state and the fear of being rejected by my coworkers if they found out that I had tuberculosis. I underwent and completed treatment for 6 months (Category I TB). Three months after, TB signs and symptoms started to manifest again. That time, I was diagnosed with multidrug-resistant tuberculosis.

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