How misdiagnosis changed my life

We all of us have life-changing experiences, that suddenly arrive, and change everything. There isn’t just one. We each live many. But I spent this weekend with a friend and discovered that something had happened to her that had happened to me too and changed my life.

One day in November many years ago, I woke up and my eyesight was blurred. It was blurred with my glasses, and without. The blurring seemed to clear in the following weeks, but I anyway got an eye hospital appointment. I actually wasn’t particularly worried about it.

But that appointment was amongst the most shocking of my life. The doctor called in another doctor, and then another, and then a professor. Everyone examined my eyes. There were a lot of holes in both my retina, symmetrically.

There are two things that cause adult-onset blindness, they explained. Retinitis pigmentosa, which turns you blind in your 20s and 30s, and macular dystrophy or degeneration, which cause old-age blindness that strikes in your 60s, 70s and 80s.

For different reasons, it wasn’t quite either – but the retina were anyway degenerating.

And then came the really bad bit, where they explained I would be blind within probably 10 years. I was going to steadily lose my central vision, explained the doctor, and then my peripheral vision and all light. And that was the appointment, ended.

I staggered out of that hospital. Thinking I had just a few years left of any decent eyesight at all changed everything for me. I quickly got married, quickly had my first born, determined to see him for as long as I could, before I couldn’t.

That one misdiagnosis changed every priority I had. But a misdiagnosis it was.

In fact, I went to a second hospital, and they gave me hope. The thing was to find out if it was progressing before diagnosing blindness ahead.

They had me in for examinations every six months to gauge the progression. A full two years later, with my son born, and my job given up, the consultant I saw called it, and said it was static. The holes had healed to scarring. I wasn’t going blind.

That first appointment was the push that gave me two beautiful sons and set me on a completely different path. But it also saw me make some large mistakes. If I had gone to the second hospital first, my trajectory would surely have been different.

But misdiagnosis, in fact, is incredibly common. In Kenya, indeed, the figures are staggering. Routinely, typhoid is misdiagnosed as malaria, and the wrong drugs given.

We have seen a most recent scandal on a man who underwent a brain operation, and was the wrong patient. But far more common are procedures and medications that are simply wrong.

Figures put together by lawyers and pathologists suggest that three out of ten patients in Kenya get the wrong diagnosis or treatment. Moreover, in hospital, some 20 per cent are killed or harmed by doctors’ mistakes.

That doesn’t make hospitals a throw-away. Four fifths don’t get harmed, but helped. Some 70 per cent of patients get the right diagnosis and treatment.

But medicine is a matter of judgement, and experience, of practice, as well as science. It is a process of elimination and detecting of clues that together point one way or another.

READ: KNH doctors go slow over wrong surgery sanction

Doctors just aren’t omniscient or all knowing, and it is our own mistake as patients to expect that of them.

Faced with a diagnosis, we can do well to get a second opinion, to push for further investigation, to be surer, and to have the symptoms explained to us, and the reasons for the diagnosis given.

And most definitely on surgery, or if our symptoms linger seemingly unaddressed.

Doctors face an ever-harder road as the subject of lawsuits for errors. But we as patients, too, must take responsibility as well for understanding the extent and limitations of modern medicine and being the overseer of our own care, in seeking justifications and explanations.

Until we, too, understand the reasons for any diagnosis. Because it’s our life.