I have Keratoconus that resulted in a cornea transplant a few years ago, and I wrote a Kos-Ability diary about that here.
The purpose of this diary is to tell the rest of the story. I did very well after cornea transplant surgery. I did develop a steroid induced cataract from the Pred-Forte eye drops taken to prevent graft rejection. I was scheduled for cataract surgery. I didn't think this was any big deal. After all, millions of people have cataract surgery. The cataract surgery went well and I remember my vision got clearer afterward.
But in late October 2010, just 7 weeks after cataract surgery, I developed a horrible inner eye infection called Endophthalmitis. This is the most horrible eye infection a person can get. It is an infection of the inner eye or vitreous. This infection can easily result in blindness or permanent low vision. If you read about this infection, the prognosis is poor.
Irrespective of the initial cause, the prognosis for endophthalmitis is generally poor, and patients are often left with limited visual acuityI woke up one morning with my eye horribly red. I had no idea why - came out of nowhere. Was the graft rejecting? Did the lens pop out? What happened? I called the ophthalmologist's office, and the technician got me in for an early appointment. I got there and the ophthalmologist said my eye was inflamed, but he didn't seem to know what was wrong. Also, at that point my vision was not impacted much. He said it was not a rejection. The doctor gave me an aggressive dose of antibiotic eye drops and anti-inflammatory drops. He wanted to aggressively treat this. He also asked me to come back the next morning.
But by afternoon, I had no vision at all in that eye except for light perception. I could tell if there was a light on in the room, but not if a person or a semi truck was right in front of me. What the hell was going on?
I was no better the next morning. I went back to the ophthalmologist for my follow up appointment. Now, it looked like an infection and a very very serious one. He couldn't treat it. I was sent to a retina specialist and fast as I could get there. Yep - I was to drive right down.
As I tell this story, please understand that I am not a medical professional. I'm a patient.
Since I was an emergency case, I would see 3 of that clinic's 4 retina specialists over the next 24 hours. They told me different things, confusing me. Also, at this point the doctors couldn't see far enough into the eye to determine how much damage had been done. All they knew is the retina was still attached.
The first retina specialist was very gloomy. He said my prognosis was very poor. He said I might not get any better at all and I interpreted this to mean I would have no vision but light perception. If I got better, he thought I'd have minimal vision. He also talked very harshly while he gave me a grim prognosis. I'm very sensitive and respond poorly to that. He then said I got this from the cataract surgery. I said "What?" He said "There are no leaks, so that is the only way bacteria could have gotten in there." That's when I understood this infection was in a league of its own. I had an infection of the vitreous body - the jelly-like part of the eye. Apparently this part of the eye is typically sealed off so bacteria can't get in. I used Google and found the pig's vitreous was once used to do bacteria cultures because bacteria grows like crazy there. Again, I'm a patient and not a medical doctor.
He said I needed emergency surgery, and then listed all the rare but possible complications such as detached retina or them introducing additional bacteria, concluding with a harsh "You have no choice." He said he didn't have time to do the surgery, and I would be seeing one of his partners. I was glad I would be seeing someone else! His poor bedside manner just got me even more upset!
I liked the doctor who did the surgery. He was more optimistic and he had a very good bedside manner. Again, I had so many questions. Would I ever get better? What were the odds? Did I get this from the cataract surgery? As I said, he was more optimistic. I really tried to pin him down. He felt there was a 25% chance I wouldn't recover and this all depended on how hard the offending bacteria was to kill. He felt odds favored a partial recovery but that I wouldn't fully recover. It just didn't happen - not from this. He said this infection happens in 1 of 2,000 cataract surgeries. But it happens the first 1-2 weeks; I was at 7 weeks which he felt was extremely atypical.
As I said, he didn't have time to wait for the culture and he told me he would "throw everything at it" that he could. That meant they would inject large doses of multiple intravitreal antibiotics to cover every possible bacteria they could.
This was on a Friday, and I needed to be seen the following morning. I was told I'd then see a 3rd doctor at that clinic. I assumed that's because he was on call that weekend. I arranged my follow up Monday morning appointment with the doctor who did the surgery since he had good bedside manners and helped me both medically and emotionally.
The Saturday doctor wasn't very optimistic either. He wouldn't give me a visual prognosis. He did say the graft (transplant - doctors call it "graft") would probably fail due to all this. I asked if I would then need a second transplant. He said the problem with that was it might reject too. He thought I would need 2-4 additional surgeries over the next couple years. That scared me!
I followed up on Monday with the nice doctor who did the surgery and he didn't think I would need a bunch more surgeries. He was also concerned the graft may reject, but he increased the Pred-Forte dose from 1 drop a day to 6 drops a day to help prevent that. I soon had more than just light perception. I could tell he was standing in front of me and I could tell the color of his shirt. He could also see in the back of the eye and told me my retina looked "nice and pink" and my optic nerve seemed fine. The graft was slightly swollen, but that reversed quickly. It never did reject.
I recovered much faster than anyone thought possible. After 2 months, my vision was about 20/60. However, I also had some "debris" or black dots floating around in my field of vision. It is kind of like a couple flies in a spider web. He said the "debris" might recede to the back of the eye over the long term. He could remove the debris by surgery, but he didn't want to do that unless he had to go in for another reason. Why? There's a 5% risk of a detached retina. If the debris was taking up half my field of vision, he would do it but at 20/60 the risk/reward ratio was just not in my favor.
During these few months, I knew I would need to see a cornea specialist again at some point. As a graft patient, I couldn't permanently see just retina doctors. I didn't know if I should go back to the cornea specialist who did both the transplant and the cataract surgery. I always liked him. He has excellent bedside manners & had a good reputation. But I just didn't know what to think after all of this. I still didn't know if I got this from the cataract surgery. The retina doctor also told me I could have gotten it from a "blurp" or something close to that. I can't remember the exact word he used. I interpreted that to mean a brief, temporary tiny opening that reseals itself. He said something about "something" being thin that day but it "obviously healed itself."
The day came when he said I needed to go back to the cornea specialist. So I asked him point blank "Should I go back there?" "Did I get this from the cataract surgery?" He told me if I asked him to recommend someone in my area, that's who he would recommend. But he understood if I didn't want to. He told me something I'd always wondered, but didn't ask. Why didn't the cornea specialist catch this infection the first day?? He told me "He was looking for that clump of white blood cells." The way he said it told me it was understandable. I understood this to mean that my immune system hadn't yet responded to the infection????
So I went back. Well, I had always really liked my cornea specialist. And all my medical records were there. I just didn't know what to think after this happened.
My vision stayed around 20/60 with 2-3 black dots or "debris" floating around. I also developed a cloudy lens which can happen with cataract surgery. They can treat that with a Yag laser. This procedure didn't carry much risk, so both my retina specialist and cornea specialist felt it was worth doing. However, they did not know how much it would help my vision. That's because they didn't know how much of my remaining problems was due to a cloudy lens and how much was due to the "debris."
Guess what? The Yag laser surgery helped. I can't believe it, but I have almost fully recovered. I was told I wouldn't fully recover. My vision in that eye is now close to 20/40, almost where it was before the infection.
They always told me I was in the top 5% in recovering from this. Well, maybe I'm in the top 1% now??? I wish the retina specialist would do the surgery to remove the debris. But if he felt the risk reward ratio wasn't in my favor at 20/60, he isn't going to do it at 20/40...