Andrea von Delft
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!
Andrea’s story featured on tbunmasked.org.