HIV is taking away my eyesight: My 11 year journey with the virus

I could not see for prolonged periods of time

When Jacqueline Wambui, 45, developed an eye infection, she thought it would go away as other infections do. This time though, she was wrong.

I tested HIV-positive in 2004. I was infected with HIV by the father of my two elder children.

There is a possibility that I had the virus in my body for some time, and I never knew or sought treatment.

 Even before that diagnosis, I had sight complications. When I looked at a white ceiling, I would see black spots.

After I tested HIV-positive, I did not know if it was my immunity that was getting low or it was the shock from the HIV-positive diagnosis that was responsible for my eye problems.

There were times that I could not see for prolonged periods of time. Both eyes were affected.  

As my immunity grew, I started seeing clearly. I had 20/20 vision. But then, my left eye kept giving me problems. I could look at a ceiling and see black spots. But I could still read my books.

In 2006, while cleaning the house after recovering from a bout of tuberculosis, my world suddenly turned dark. I could not see. I rested a bit, and then I regained sight in my right eye.

That same year, I went to a local hospital and, after examination, the eye specialist told me that I had cytomegalovirus (CMV).

She told me that it was an opportunistic infection. My retina was detached from the iris, which was why I was seeing black spots.

She also told me that there was nothing that could be done to treat the condition. No spectacles. No nothing.

The condition worsens when the sun is very bright and when fluorescent lights are on. At night, if there is an oncoming car with its lights on, I become totally blind and disoriented.  

Have the surgery or not?

The other day I went to see an optician and they referred me back to the same hospital where I had been told that my condition did not have a treatment.  

To seek another opinion, I went to a leading eye hospital. The doctor told me that I should have a surgical procedure performed on my left eye.

Here is the downside: there is no guarantee that the operation will be 100 per cent successful. I may come out of the theatre blind. That scares me. I am still thinking about it.  

 Two Sundays ago, I woke up with a splitting headache. In fact, my head ached the whole day. Two days later, my left eye shut down.

 I thought it had something to do with my viral load. When I recently checked my viral load, I found that it is suppressed. It has been suppressed for a long time.

Now I can just see shadows through my left eye. I cannot read. I do not understand what is happening.

I can read with my right eye, but only from far. I am beginning to think that my right eye could also be affected because it is getting progressively worse.

I do not use any medication or spectacles for the condition because I have been told that they will not help.

I have total night blindness. At night I am very scared. On sunny days, my eyes really ache. Be that as it may, I will not allow CMV to shut my windows.

I have been taking ARVs for about 11 years now. I want people to know that as much as we are being told that antiretroviral drugs prolong the lives of people living with HIV, we still have chronic illnesses that doctors cannot treat, but you have to keep managing them along the way.

And such illnesses mainly happen to those of us who knew our HIV-status years ago, and have been on medication for a considerable amount of time.

Maybe this is what caused this chronic illness, and by the time the body tries to fight back, some of the organs have been affected by the virus.