16th month of treatment

As she approaches the end of her treatment for drug-resistant tuberculosis, White Orchid considers what she has gained and lost...

The most relevant question for a patient to which no one knew the answer: in case of a standard treatment with good dynamics and negative sputum test results, based on which indicator do doctors decide that the treatment is over – is it the number of doses or months?
"In each case it’s different," is the wrong answer.
When I started treatment, it was necessary to take the total amount of doses in two phases of treatment - 430-450 doses. The schedule of the intake of medicines with breaks on Sundays and 2 other days per month just fits 18 months. For those who cannot tolerate side effects the treatment can be temporarily suspended, thus it extends to up to 20 months.
Yesterday I found out that for patients the treatment is being extended by 2 months. Why? I have no other assumption that it’s being done in order to reduce TB-related mortality, thus increasing the mortality from other diseases caused by side effects of the drugs.
So, during the intensive phase I took 222 doses. This is a lot - some take less than 200. During the continuation phase my progress was good, so I only had a month added and the dose was increased to 1.0 (it was 0.75). For adults, there are two types of doses: 0.75 and 1.0. A dose of 0.75 is given to a person whose weight is 50 kg or less. Why does a person who weighs 51 kg take the same dosage as a person who weighs 90 kg? Doctors say that nobody will divide the pill. But for patients this is very tangible.
What I acquired during the treatment:
- intolerance to smells: cigarettes, cheap perfume, wall paint, vinegar, alcohol on someone's breath
- allergy to wool and to dust in the form of a cough
- symptoms that are typical for TB (shortness of breath, fatigue, sweating. The latter is explained by the autonomic nervous system)
The second question the patients are concerned with is whether it is possible to reduce the dose itself? Hmm, the main thing for cure is 1. to maintain the ratio of the medicine dosage and the weight of a person and 2. The dosage of all the medicines in the regimen are being reduced in proportion to each other.
Later, my treatment was extended by a second non-added month. And my 222 doses didn’t save me from that. So the answer is: to date, Belarussian doctors go by the number of months of treatment. By the way, the period of reproduction of mycobacteria is about 2 months.
And a bit of biography. I will return to the theme of paradise and hell. My colleague from the last place of work informed me that the position had been vacated and they were waiting for me to come back. In euphoria, I'm preparing for a journey, switch to video-controlled treatment. And that’s it... the ground crumbles under me: for three days I cannot get up. The preparations exhausted me completely. I had been taking medicines for a long time and in a proper way: "Is it possible to refuse treatment without causing harm to the health?", "If it were not for an increased dose...". Apparently, I have not finished everything in purgatory. I'll tell you next month.
Video monitoring is a smartphone with a special app that records the patient taking the drugs he had been given for several days and forwards this to a specific server, from where the information is sent to the health care provider's computer.
- no financial, physical and time costs
- instead of Sunday, you can get a break from taking medication on any weekday (when, for example, you need to go on business)
- it’s easy to replace medicines with a fake
- a possibility of seeking help from a programmer
- suits responsible patients with a strength of will.
After increasing the dose: "Ouch!" – I turn on the water, I’m electrocuted by the mixer tap. I’ve already felt it somewhere... In the hospital! My neighbours in the ward joked at me: I wrapped my hands in rags of natural materials, and then resigned myself to electric shocks. There was earth connection there, because others were not electrocuted. As if the dosage has been deliberately increased so that I would recall the sensations and what I forgot to write in the blog. The main thing is to keep the drugs inside you for at least 40 minutes. PAS (para-aminosalicylic acid) is best taken with milk, better cold one. Coffee is not a drink, it's food. Bedaquiline is tolerated better than older drugs, but is cleared from the body much longer (about six months). One should sneeze (both healthy and sick) in the HANDKERCHIEF or in the SLEEVE, but not in the hand (there may be bacteria on it!). Take care of yourself. Due to the treatment with the older generation drugs, many patients acquire an endocrine disease - hypothyroidism (slowing of metabolism in the body). Many TB patients look very attractive: well dressed, students, bosses, and even, what particularly surprised me, well-nourished people.

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