MY HEALTH EXPERIENCE:JAMES CUFFE: There were cavities everywhere in my lungs
I FELT like a transit station, a stop for the disease before it goes on to other people. Luckily in my case, it didn’t pass on. Tuberculosis (TB) stopped with me.
I make light of it now, but my predominant emotion in the first few months was anger, broken up with feeling sorry for myself. There was no identifiable source, I didn’t know where I caught it, so there wasn’t anyone to blame.
It started in early 2010. I’d been battling giving up cigarettes and I started to cough, but it didn’t seem to be anything to worry about. I was working on my PhD at University College Cork with the Irish Institute of Chinese Studies, and I’d been researching in China for a few months. The plan was to go back there later in the year.
But in April, I developed eye auras. I could see light breaking into everything. It lasted about 10 minutes each time. It was as if you burnt a photograph and the picture started disintegrating on top.
They couldn’t find anything wrong at Mercy hospital; they thought it could be a migraine without the headache. No one really linked it to TB afterwards, but it did stop when I started taking the medication. It was bizarre.
I had to go back to China in June for a short trip as I was involved with the Irish stand at the Expo 2010 in Shanghai. However, I wasn’t sleeping properly and with my loss of appetite, I began to lose weight.
Back in Cork, I went to see my GP. She gave me medication, the cough went away and came back again. So she sent me for an X-ray. Something showed up in that, and I went to Mercy again.
They did a CT scan which showed holes; there were cavities everywhere in my lungs. It was absolutely frightening. They weren’t sure it was TB, so I was isolated in a ward for a few weeks.
I don’t remember exactly when they told me, I know I accepted it instantly. I was trapped in a room and the only way out was when they knew it was TB. I weighed less than nine stone by then.
Once they put me on medication in August, it only took about 10 days before the side effects started.
I had awful muscle weakness. Sometimes sitting on the sofa I felt I was going to fall off. I’d lie on the floor, but still feel I was going to fall off.
The worst was about two weeks in. I was at home and got a pain in my chest. It was like a train hit me, like someone got a pike, drove it in and turned it to crack all my ribs. I never experienced pain like that in my life, it was terrifying.
At the hospital, they checked for a heart attack because my blood pressure was through the roof, but couldn’t find anything.
For the first two months, I was on 12 tablets a day. The doctors drummed it into me not to miss one single day of the medication. After that, a lower dose, for seven months.
The general message from the doctors was that I was more than likely going to be okay. They said I might be left with a permanent cough, or rasp but luckily that hasn’t happened.
I did miss out on things, I missed the Expo. But I was lucky, the first two months were bad but after three months I began to get some energy back.
I was staying at home all the time, and once I was able to get up the stairs, it was better. A good day was being able to leave the house. But other days I didn’t have the energy to cook, let alone go to the shop for food. My mother prepared meals, and my father delivered them. But without help from my friends and family, who knows what could have happened?
April 27th was the last day of the medication. As soon as I stopped taking the tablets, I felt immediately better, more active and no more stomach problems.
I appreciate being healthy. I’m healthier now than at any stage in my life since adolescence. I’ve even started going to the gym, wallking and cycling and there is definitely no more smoking.
I’m completely healed, and normal.
TB IN IRELAND: THE FACTS
* In Ireland, less than 1 per cent of the population is diagnosed annually.
* Symptoms in various combinations could include: fatigue, weight loss, breathlessness, eye auras, headaches, coughing, loss of appetite, spitting up blood.
* The BCG vaccine is commonly given to infants, and has recently been resumed in the Munster area.
* See Immunisation at immunisation.ie; Tuberculosis at hpsc.ie
In conversation with NIAMH GRIFFIN
