I wasn't sure if I was up for writing this, but I felt like I had to, as I couldn't find another case like it on the site.
Some of you may recall, I created a topic several weeks ago about my fiancee receiving an early call during her 7th week of waiting for sputum culture results. Well, as was the general consensus, she was indeed informed that her results came back positive for TB. Like many people who go through the dreaded sputum tests, my fiancee had no symptoms of TB - no cough, no fever, etc. She looked and felt perfectly healthy, so the notion that she got the call was really surprising. As much as I tried to prepare her for what they were probably going to tell her, and as much as she assured me that she was prepared for the outcome, the news really devastated her to her core when she officially received it.
I tried to reassure her that everything would be fine. I told her it would be an extra six-months, but we'd get through it. Others have gone through this process and after 6-9 months they were cured and happily together with their fiancee. It's good that they at least caught this so you can get better, etc. The more I tried to talk her down from her disappointment, it seemed to hurt her more and I couldn't understand why... until she found the nerve to reveal the full scope of what the doctor told her.
He said she would need to be under Direct Observed Therapy for 18 months.
This absolutely shocked me. My immediate reaction was that she either misheard this doctor... or he didn't know what he was talking about... or he was a sadist who enjoyed telling patients the absolute the worst-case-scenario up front. I felt angry that St. Luke's was handling this so irresponsibly. I rushed over to Visa Journey and scoured the forums for topics in which others had to go through 18 months of DOT. I came up empty, which made me feel validated that there had to be some misunderstanding. I relaxed a little bit.
Over the next week, we did some apartment hunting and found her a cozy little place in the vicinity of SLEC. During her transition into her new apartment, I continued to reassure her that no matter how long her treatment takes, I'd be with her every step of the way to make sure she's okay. The first day of her treatment came around and they gave her a form that described her case in detail.
It indicated that over a 3-day period they had done 3 smear tests and 3 sputum culture tests. All smear tests came back negative. However, her culture from the first day came back positive, while the 2nd and 3rd day's culture samples were both negative (what the heck???). Here's where reality finally hit me in the face - under TB type, is listed her infection as "Mono-resistant".
I looked this up and found that it is a rare type of TB that is resistant to only one of the two most effective medications typically used to treat TB. Taking a look at the 4 medications they have her taking, it was clear that they performed a Drug Sensitivity Test on whatever grew in her sputum and determined it was resistant to Rifampicin (the most effective of the first-line TB drugs), as it was swapped out for Levoflaxin (a recently approved second-line TB drug). St. Luke's charged us extra for this particular medication - said it was a new policy.
SLEC is apparently following the World Health Organization's recommendation of treating Rifampicin-Resistant TB with the same regimen used in Multi-Drug-Resistant TB, thus 18 months. My fiancee has never had TB in the past, nor has she taken any of the medications typically involved in TB treatment in the past. This means whoever she contracted the infection from must have had the drug-resistant strain and passed it to her. She's now in her second week of treatment. Her spirits have improved a lot, and she's been taking the situation pretty well, considering everything. For anyone, the prospect of going through this for a year and a half would be demoralizing and intimidating. I think she's starting to adjust to the meds, but there have been days where the side-effects have had her in a bad way. It's heart-breaking to witness.
There's nothing that makes the situation any easier to swallow. 18 months is almost like going through regular DOT 3 times, back-to-back. The only consolation for us is that she's on her way to being cured. I'm not sharing this with the intention of scaring anyone. From what I understand, this is a very rare outcome, beyond the already rare case of a TB positive result. I just want to provide a resource to anyone who might find themselves in a similar case in the future.
Thanks for listening.