TB & Me: 'If someday I have to die because of this bad, ugly bacteria I will make sure I will not die without fight'

19 December 2016

I'm  woman in my early thirties, and am a health care worker at a general hospital. My experience with TB started seven years ago, when I studied at a medical faculty. Two weeks after I finished my round at the pulmonary ward I started coughing, then I had difficulty breathing.

My chest x-ray showed massive pleural effusion at my right lung. The pulmonologist then evacuated the effusion and gave me four standard tuberculosis drugs for six months.

I was cured.

I worked at the general hospital again after I completed my treatment.

Everything was just fine until last year. 

False hope

At the beginning I just felt I was getting tired easily. I didn't suspect it might be caused by TB again.

I had a blood test just to find everything normal. I then took more time to rest, and usually my tiredness resolved.

Several months later I started to cough, but it was dry cough.

I felt my world crumbling. It was as if I had been sentenced to death.

I had no fever, a big appetite, and I gained weight a lot. Because of this, I didn't suspect that I might have had TB.

Then I became worried. Almost a month passed by and my cough didn't get any better.

The cough became productive. It had thick sputum, sometimes white as milk, sometimes clear as water.

A new strain

I had an AFB stain examination but it found nothing.

I then had a chest x-ray, while taking a broad spectrum antibiotic. The results revealed miliary TB (a type of TB characterised by widely spread but very small lesions).

Okay, it shocked me.

But what I had in my mind was I'd just have to take category two TB drugs for eight months. I still could bear it.

But then the pulmonologist thought I may have multi-drug-resistant TB (MDR-TB), and sent me to take a GeneXpert test (a test which detects the presence of TB, and also resistance to rifampicin, an antibiotic commonly used to treat TB).

The consultant called me when the result was positive for rifampicin-resistant MTB.

I felt my world crumbling.

It was as if I had been sentenced to death.

Why me?

There were several times I'd seen MDR-TB patients at work. I watched how they suffered during treatment.

Many of them died.

Many of them stopped taking their medicine because they could not bear the horrible side-effects.

I read the journals, I read about the bad prognosis, how there is so much unknown about MTB, how the treatment so hard.

I had so many questions inside my head.

Why me? I completed my six months treatments without any days off, so why did I still have TB inside my lung?

I was really upset angry: why could I not protect myself?

The pulmonologist said it was still possible the TB became dormant before finally relapsing.

Besides, my country is TB-endemic, and I work at a general hospital where it is impossible for us to know whether every single person we meet has TB or not.

At the hospital, the only protection device from airborne infection is just a simple mask - you know the one surgeons use in the operating room.

It does not provide secure protection from TB. N95 masks, which provide much more protection, are here only used for people who work on the MDR-TB ward / clinic.

I was really upset, I was really angry with myself: why could I not protect myself? 

The disease that keeps me from everything I love

This disease really changed my life.

I love my work, I like to help patients, and I like to comfort them through terminal illness, but this disease forces me to stay away from everything I like.

I have to take my treatments.

I have to take a break from my work at the hospital.

I have to keep distance from my family.

I have to fight every horrible side-effect of the drugs.

I could not stop thinking about my family - my greatest fear is if someone from my family or one of my friends contracts TB because of me

I have persistent nausea and vomiting, hair falling out, darkened skin, tinnitus, abdominal pain, myalgia (muscle pain), and arthralgia (joint pain).

My pulmonologist even had to change my regimens three times: I had elevated transaminase (which indicates potential liver damage), leukoytopenia (a decrease in white blood cells, which puts people more at risk of infection), thrombocytopenia (a decrease in platelets in the blood), and hallucinations.

There have even been times when negative thoughts suddenly popped into my head.

I feel useless, and constantly worried that the drugs won't work.

I could not stop thinking about my family - my greatest fear is if someone from my family or one of my friends contracts TB because of me.

Constant worries

Now I'm in my ninth month of treatment and completed my intensive phase.

But I still have a long way to go. I have to keep battling the side-effects of my drugs.

I often really feel overwhelmed.

Everything looks so not right. I feel everyone is looking at me and judging me. I worry about how my future will be.

Do the drugs really kill the TB? Can I bear the side-effects? Will I still be able to do my job? Could I continue my education? How long will my time last? How are my family? Could I still have friends?

Sometimes it is so unbearable that I want to kill myself.

Courage

The bad part of the health system in my country is that they don't think psychological support is important.

Often we patients need to talk, to share what we feel, but we don't have any access to any mental health services.

Even among medical professionals here, many still don't want to keep contact with the patients.

That's what makes this disease even scarier.

If someday I have to die because of this bad ugly bacteria I will make sure I will not die without fight.

I wish I could complete my treatment and once again be cured. If someday I have to die because of this bad ugly bacteria I will make sure I will not die without fight.

And also for everyone who works in medicine, I know I'm not the only one who has contracted TB.

I know there are more people who are having the same experience as me.

I hope what I write here will encourage all of you to protect yourself while working.

 

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