2006 was the year my eye-trouble began; approximately two or three years before that, I was diagnosed with active CMV and was prescribed, along with all my other meds, Valcyte, a special antibiotic that, if taken as prescribed, will hold that particular virus at bay. This is important because not only can the CMV become systemic resulting in other health issues, it can also eat tiny holes in the retina which eventually causes retinal detachment, a condition that causes blindness in whole or in part.
The (almost) surest way to avoid the CMV-related detachment is to consistently take the Valcyte. Well, I believe I have already established that my track record with med-compliance is less than ideal – it was no different with this medication. If anything, it was worse; I decided I did not like the side-effects so, without running it by my primary care provider, decided to cease that part of my recommended regimen. I can only assume how frustrated my provider became when appointment after appointment my answer to her, “Have you started taking the Valcyte again yet?” my answer was always, “Nah. I don’t feel like it.”
One night in early 2006 I was sitting in bed reading when I noticed the field of vision in the upper left portion of my left eye was non-existent. At first I simply thought I was tired so put the book down and went to sleep. When I awoke the next morning, my vision had not improved and I immediately realized what was happening – the CMV had gotten worse and had begun to dine on my retina. I went directly to the clinic, sought out the pharmacist and my provider to inform them what was happening concluding with, “I’m ready to take the Valcyte now.” They told me that while they were happy to hear that and it would likely prevent further damage, mostly in the right eye, it was too late for the left and that I would need to see an ophthalmologist.
It was determined that I would need surgery to reattach the retina; they used a silicone gel to hold the retina in place. While the gel is commonly removed after a time, in my case, it remains. When my current doctor found out about this procedure, he wanted me to be seen by an SFGH eye-doctor, who then had me seen by a retinal specialist who confirmed a slight swelling in the left eye, a swelling which hampers the already diminished vision. Oddly, it happened so gradually I did not realize that the vision had gotten worse until I went for the recent tests. The specialist also determined that, there appears to me no presence of active CMV in either eye, there is also no immediate need to remove the gel, and there may never be. She thought we could try Prednisone eye drops to reduce the inflammation. I am supposed to take the drops once every hour and when I return to San Francisco from this current trip East, I will be checked again to see if the swelling has gone down. If it does, we will leave things as they are – if it does not, other courses of treatment will be discussed.
Luckily for me the specialist said that she would be satisfied if I managed to get at least six drops daily. I say luckily because it is not difficult for me to get so engrossed in a project that two or three hours can pass before I realize that I need to take another dose.
As I stated in a previous posting, I have been 100% compliant in taking my HIV meds (Valcyte, too) since late January. The drops, which were added later, have taken a little more effort into working up to regularity.
I learned with the pills that planning ahead is what seems to work best for me; each morning when I prepare my early dosages, I also prepare my evening meds, even putting them in a tiny case which I carry with me on the off-chance I will not be home in time to take them.
That same mindset has finally taken hold with the eye-drops; after I take my first dose of Prednisone for the day, I set the alarm on my phone for exactly one hour later. When the alarm goes off, I take the next set of drops and then reset the alarm for the next hour. I continue that all day. Since I started doing that, I haven’t missed a single hour. As a result, I come close to getting the ideal twelve drops per day rather than the minimum six – all depending on how early I fall asleep and/or how late I wake.
I thought it was going to be a hassle to set the alarm every hour on the hour. I thought wrong. In reality it makes me feel better knowing that the action has been helping me keep the commitment to myself to be more diligent about my own participation in my health care.
The other thing that makes it more tolerable than I had expected was the realization that dealing with the alarm every hour on the hour is much preferable of waking up alarmed because I can’t see.