ON February 14, 1997 we put our 13-month-old daughter to bed so my husband Matthew and I could enjoy a romantic meal.
Later that night and through the next day, Matthew was as sick as a dog.
We had eaten the same thing. He’s ill and I’m not, so what’s the story?
A day or two later Matthew was back to normal so we thought no more of it. Maybe it was just a tummy bug.
But over the next few months it kept recurring.
In the same year Matthew (33) was hospitalised with pneumonia three times.
Pneumonia is very unusual in a healthy young person once, let alone three times in less than a year.
After his second hospital admission the doctors started to become concerned. They even thought it could have been caused by the chickens we had in the backyard.
Matthew had the usual X-rays which showed that his pneumonia was caused by lesions in the bronchi, which meant that when he got a cold the mucus couldn’t be cleared by coughing.
It would build up, causing an infection which then turned to pneumonia.
This was very worrying as the causes of lesions in lungs were very nasty.
At this point the big C word was being bandied around. The next step was a bronchoscopy and biopsy. This is where the doctor runs a camera down your throat and into your lung. The procedure is done only with a local anaesthetic. As you can imagine it isn’t the nicest experience.
The results of the biopsy were inconclusive.
Matthew underwent three biopsies, each more invasive than the last. And each time the results were inconclusive.
Whenever Matthew would get a cold it would travel to his chest quickly.
Then within 24 hours he would start to run hot and cold, his temperature would start to rise and on several occasions it topped out at 42 degrees. This is the point where brain damage can occur.
I remember one time when I was trying to get Matthew into the car to take him to the emergency doctor, he just refused to budge. His temperature was up to 42 degrees, he was shivering uncontrollably and said he just couldn’t get warm.
This was my husband of 11 years, my best friend, the father of my child. Eventually, I had to threaten to call an ambulance to get him to move to the car.
As the year continued and Matthew kept getting sick, the doctors started looking at other causes for his illness. They started talking about sarcoidosis, a rare disease that can affect any part of the body.
They still hadn’t ruled out cancer but now they thought it less likely. They did further tests but sarcoidosis is extremely difficult to conclusively diagnose. I had so many questions. How did he get it? How do we cure it? And, as a mother, is it hereditary?
Most of our questions went unanswered. The only treatment they could offer were high doses of prednisone, a synthetic hormone with the most atrocious side effects including mood swings, weight gain, deformities and sleep disturbances, to name just a few. The side effects were worse than the disease.
Eventually Matthew’s lung specialist suggested that we consider a surgical option. That option was the removal of the top left lobe of his lung. This was a very invasive and radical option. But as long as he had the lesions in the bronchi he would have continual relapses.
Ten months after the first signs of sarcoidosis he had the surgery. During the surgery they took one final biopsy which finally confirmed that it was sarcoidosis, not cancer. This was the greatest relief.
Since then, every time Matthew gets a cold that starts to travel to his chest he’s off to the GP to get a prescription of Augmentin before it progresses any further.
Thankfully he hasn’t needed to be hospitalised since the surgery. His regular follow up X-rays haven’t shown any further lesions.
He refuses to live his life on prednisone the way the doctors want him to and I still hold my breath whenever he doesn’t shake a cold easily but we don’t dwell on his diagnosis.
Matthew is an active man now who enjoys the gym, touch footie, camping and spending time with his family.
It was a very stressful year for us as a family, emotionally and financially, one I’m glad is well in the past.
* The author did not wish to be named.