Thursday, April 14, 2016

My Retinitis Pigmentosa With Cataracts Journey, Experience, Strength and Hope

I want to share my story that began in August of 2015, my second post op on April 4, 2016.  This was an amazing journey for me, because I had cataracts caused by retinitis pigmentosa complicated by extreme myopia, an astigmatism, plus a lazy eye that is actually still quite blind.  However, my vision was improved greatly from lens replacement by one of the best eye surgeons in South Carolina.

I went for a routine eye exam, expecting the usual 'nothing much we can do,' to hear that the cataracts I had had for many years and thought nothing could be done about could be removed, so they made an appointment for me with Dr. Ying in Charleston.

Two months later I took public health transportation to Charleston by myself to see her at her office.  I had all the tests and measurements, plus a full eye exam.  I loved Dr. Ying immediately.  She was so kind and down to earth, a small petite and cute woman with a huge persona and confidence, at least how I saw her from the very first in her dark blue scrubs.

Two months later I was taken to Charleston by a good friend as well as my mother who came along.  Although Dr. Ying had thought to do the good eye, since I am blind in one eye, I wanted to do the bad eye first to see how it would go.  Unfortunately, I was and still am quite blind in that eye, because the retina had atrophied so much, and that had always been a lazy eye.  I was sad about that, but really knew it would probably not be a great improvement for that eye.  All I saw was blackness, although I was awake for the surgery.  I cried when I went to the bathroom in McDonald's afterwards, because I had a bandage on my eye, and had been trying to take it off to see if I could see at all, only to see that it was clear acrylic meaning I still could not see in that eye. 

I got checked out at the office in Charleston afterwards, and my pressure was up, so they brought it down with drops.  I had a splitting headache as well, probably from fasting before surgery and delayed coffee intake.  I brought a thermos of coffee, so I could have it after my surgery.  They gave me apple juice immediately after.

I was still wearing thick glasses, because the right lens does not make much difference for me, and I was afraid to have my one seeing eye operated on.  I researched all the time on the internet, even about the eye drops you have to use for two days before and four weeks after surgery, the antibiotic drop for only seven days after surgery.  I got the best antibiotic eye drops available, which Dr. Ying prescribed.

Because my vision was still so nonexistent in my bad eye, I canceled my second surgery.  I have a doctor in Myrtle Beach as well, and they work together, he and Dr. Ying in consult.  He had her call me to talk about my fears and reservations being a one seeing eye patient.  She was very sympathetic, said the whole situation of my having RP and a lazy eye as well was like 'really?,' and this really helped me to get resolved.  Having gone over the ninety day maximum of time you can wait after an eye exam for insurance to pay for eye surgery, I went all the way back to Charleston in public health transportation again on my own to see her for another exam.  I was really on board, and felt really good about things.

Two months later another kind friend drove me to Charleston for my surgery.  I was afraid, but I decided to have acceptance the night before.  Still, I felt more confident, having been through it all before.

I was somewhat dehydrated, and I was given some fluid through the IV.  In the operating room, I said to the anesthesiologist, "I don't drink, smoke or take pills.  This is my only chance to get high."  I had something for my nerves, but again was awake.  They cover your whole face except an opening for the surgical eye after they cleanse the skin around the eye.

During the surgery, I felt like I could feel the irrigation, although I do not know if that is possible, and all the while I saw exquisite colors, mostly fuchsia and magenta in  kaleidoscopic type patterns, sort of psychedelic.  I later asked Dr. Whittaker, my Myrtle Beach doctor, about that, and he says that some people see that, but no one knows what it is, but that it is a good sign. 

Dr. Ying talked to me at points during the surgery, telling me what was going on, and I answered in a word or two like, "oh great."  Afterwards I got apple juice again, two glasses, so thirsty.

I felt good about my vision.  I was seeing pink lines and my eye was blurry and the pressure was up, but even with the bandage on and the other eye blind, even though I needed assistance, I knew I could already see far better without glasses which I no longer needed with my new lenses, than I could before with glasses.

When I went to the doctor's office in Charleston and went into the bathroom, I saw my own face in the mirror without corrective lenses for the first time in my whole life. 

Four weeks later on my second trip to Dr. Whittaker's, the drops finished, my eye healed, the physician's assistance said she got chills when my eye was examined, because of the amazing improvement of my vision which had been absolutely terrible.  It was truly a miracle.  I was prescribed distance glasses, which I got, and my insurance paid for as well, due to the surgery.  I had to pay a little extra, since I wanted polycarbonate, only having one seeing eye, and a little more stylish glasses than the sale frames.  For the first time in my life, I got to get thin glasses.  The thickness of my glasses had been an issue even in my childhood.

I can see television and computer as well as read without any glasses now.  With reading glasses I can see very small print and detail.  With my distance glasses I can look out the window and see down the street. 

I am still legally blind due to retinitis pigmentosa, because of my field of vison and being blind in one eye as well as the night blindness caused by RP, but I feel so sighted that I am walking on air.  This is the most amazing thing aside from giving birth to two healthy boys, that has ever happened to me in my entire life. 

For anyone with RP who needs cataract surgery, after going through this and the success of it, I say 'go for it.'  Having better vision is so amazing.  It is not really that I got vision back, because once the retinal cells die, they are gone, but I got new vision I never had.  Colors are brighter and truer.  I am no longer highly myopic, and my astigmatism has been a great deal corrected.  Plus the cataracts which make things foggy and dull have been removed.  It is just wonderful.