In December 2013, Tom Maguire, a member of the Campaigns Team at RESULTS UK, went to Romania to find more about the TB situation in the country and hear from those who have been affected by TB first hand.
One of these people was Cristina who’s story we’re sharing here. Cristina discusses her experience of living with multidrug-resistant tuberculosis (MDR-TB). Her moving story shows the huge impact that MDR-TB can have on a young woman’s life and the level of courage and determination that needed to complete two years of treatment.
It couldn’t happen to me? Living with MDR-TB in Romania
You hear about it on TV but you think “Neah! It couldn’t happen to me”. And then it does. And you’re confused, thinking what you’ve done wrong, why did it pick you, until finally you realize you’ve done nothing wrong, you weren’t chosen, your just a percentage of those who catch TB, one of the poor, the malnourished or in my case simply unlucky.
It all started in September 2012. I’d got a cold – at least that’s what I thought – and I decided to go to the doctor (till today I don’t know why because it didn’t seem to be something severe). He consulted me, gave me some pills and told me to come for another check in few days. I took the pills but immediately after I felt a pain in the upper left side of my back. I went back and told him and we decided to take an X-Ray of my lungs. There it was! A dark spot on my upper left lung that could be either cancer or tuberculosis. I went to a specialist and found out that it was actually TB. I was told I should be happy, TB is curable unlike lung cancer. Imagine my surprise, I thought TB only existed in the past. I didn’t know anybody with TB, no one in my family had it. After surprise came fright. I was terrified that I might have passed it on to my family. My best friend had just found out she was pregnant. I was devastated. This was a feeling that would come back from time to time to haunt me: did I pass it on to someone? Will they have to go through the same hell I’ve been through?
I began first line of treatment later that month. Even though 6 months seemed a hell of a long time I encouraged myself, thinking it’ll pass in no time.
I had no idea that this part of the story was just beginning. After three months, the antibiogram result came. I had to go to the hospital again (before finding out I had TB I had never been to a hospital before), this time for at least three months.
The period of hospitalization was the darkest of my life. I couldn’t understand how and why this was possible. One moment, I was getting on my life, working, going out, planning a baby, the next moment I’m fighting a potential deadly disease. It took me days to get used to the nurses and all medical personnel wearing a mask. I would startle whenever they entered the room. And then there were the people. Oh it was like I was taken out of my world and thrown into a parallel world. They talked Romanian, looked similar but had nothing to do with the people I was used. I found myself among poor people, uneducated, and I simply couldn’t understand what have I got in common with them.
In time I got to know them. They were poor people indeed, but smart, funny, who had been through in one life more than we’ll ever go through in ten lives. What struck me most was that they were so young. There were seventeen, eighteen, most of them in their twenties, thirties. One day this girl came. She was fourteen. The most beautiful young lady, with deep blue eyes. She was crying her eyes out. Scared to be all alone, away from home. It felt so unfair for her to be going through this at her age. She should be enjoying the best time of her life, instead she was fighting TB. Some of them became my friends. I hope I’ll be seeing them years from now.
After five months in hospital (yes I was in the hospital from January 2013 to May 2013), I woke up with a rash all over my body and a swollen face. I called for the doctor. I found out I was allergic to one of the antibiotics. In order to find out which one it was, I had to interrupt my treatment until my skin was clear and the gradually reintroduce them and watch for a reaction. Everyday they’d draw blood and monitor every inch of my skin. Anyway finally we found the problem, I was allergic to Ofloxacine. There were replacement drugs but the hospital had none at the time if I remember correct, and even if they did there was a big chance I’d be allergic to those too.
In order to have a complete treatment I had to provide myself with a drug that was too expesnive to by in Europe so I had to buy it online from India. It felt like drug dealing for someone that hasn’t ever touched drugs in her life. Ironic, huh? Beats going to the pharmacy! Even as we speak I’m waiting for a new shipment to come because I only have treatment for 5 days and all southern Romania is snowed in. Hopefully they’ll be here by Monday if not I’d have to track down someone else that buys this drug and beg for a few pills.
After all this, it is now looking like we are heading for calmer waters. I was planning my summer holiday, when the microscopy result came in positive. My doctor decided that I should have surgery to remove part of my left lung. I forgot to say what wonderful people are the two doctors from MDR section at Marius Nasta Institute. Wonderful people and great professionals. So at my doctor’s recommendation I decide to get surgery. Too bad that meant giving up my long awaited and well earned vacation. Getting half a lung removed was actually the easiest thing that I to go through. That’s probably also due to the fact that I was taken care of by highly qualified medical personnel that gave it their best, at least as I’m concerned.
After this, things really started to fall into place and besides a few adrenaline rushes from the pills, life’s beginning to return to normal. Instead of having to take the pills for a year, I’ve only got something left and that’s a big step forward.
I can’t stop thinking though how useless this was. I should be raising a baby, enjoying motherhood. This is what a woman my age should be doing. I shouldn’t be fighting for my life because of a disease that’s taking lives because of the government’s indifference. It’s so stupid that the government would prefer to pay for my expensive treatment, rather than do what it take to eradicate TB. That money should be used somewhere else, somewhere where it’s really needed.
I am thankful for a wonderful family that supported me, for the most wonderful friends that were always there for me regardless of my disease and for the people I’ve met that have shown me that there is still kindness left in us.
For all of them I’ll take each and every one of my pills every day even though sometimes I’d rather swallow bricks. I could never betray their trust and put their life in danger knowingly.