I never thought that Thanksgiving Week would be like this. Disclaimer: I write these lines mainly as a personal catharsis. If you begin to read these lines, but later tire of the detail narrated herein, I will certainly not think less of you, even if you should tell me. I write these lines, first and foremost, for myself. I will give some details about which some potential readers might be interested. Here we go!
Background Information: My wife, Rose, has had a medical condition of her eyes for over twenty years. According to the literature, it mainly affects young people, though she was in mid-life before we ever knew about it. It is called keratoconus, and is condition where the cornea of the eye progressively becomes thinner, with a part of it bulging out, causing to cornea to become cone-shaped instead of a an object with a round surface.
As Rose’s vision became more and more difficult to correct, a temporary solution was found. Because of the irregular shape of her corneas, gas-permeable contact lenses (usually prescribed for people with irregularly shaped corneas) became painful to wear. Our optometrist, who has treated many patients with keratoconus, suggested wearing a soft pair of contact lenses underneath the gas permeable lens. The soft contact lens served as a cushion, and the main vision correction came from the gas permeable lens. We were told all along that someday, when her condition reached a point of no return, she would be a candidate for corneal transplant.
In 2010, she had a procedure done on the cornea in her right eye, believed to stave off the problem and improve vision. She had INTACS (intracorneal rings) implanted, which attempt to flatten the cone-shaped cornea. Unfortunately, the INTAC implants did not improve the vision, but rather made it less clear. She continued to use two pairs of contact lenses on that eye, but vision was diminished. Because she felt that her vision was worse after receiving the INTACS implant, we decided not to do the same procedure to the other eye.
So . . . for the past seven years, Rose’s left eye has been her better eye. She has kind of made do with her right (INTACS implanted) eye, but has depended largely on her left eye.
Until the last ten days . . .
She had some trouble with the left eye around Tuesday, November 14. She made an appointment with Dr. E. L. Jordan, and excellent ophthalmologist in Joplin, who also happens to be a member of our church. Our son, Greg, was a friend of his son in school, and our daughter, Kim, was a friend of his daughter in school. Rose has consulted Dr. Jordan for medical issues concerning her eyes, but has continued to have annual vision checkups with the optometrist, who found some relief for her in the two decades she has battled with this condition.
She visited Dr. Jordan on Wednesday, November 15. He found that her left eye was scratched, and even removed some foreign object from up around her eyelid. He prescribed some eye drops, and told her not to wear contact lenses on that eye for a couple days. If everything felt better, she could begin wearing contact lenses again in that eye for a few hours on Friday, and then build up. It was difficult for her to work, as she was not using any kind of vision correction on her good eye. She put contact lenses in for a while on Friday, and then again on Saturday. On Saturday, we made a day trip down to Tulsa to meet our daughter, Kim, and her family. By Saturday night, back home in Joplin, things were not good. She had discomfort in her left eye, and was afraid. She had me look at it, which was a tremendous help, since I know next to nothing about eyes. I did see something that looked like a scratch. At this writing, I am pretty sure that what I saw was a hole in her cornea. She spoke to Dr. Jordan, worriedly, at church on Sunday morning. He told her to come to his office at 9 AM on Monday.
She described Sunday evening and Monday morning, like there was a cloud in her eye, that kept her from seeing. Then at times it would clear, and she could see something. She was afraid. I drove her to work Monday morning and 8 AM, and she worked for about an hour. I picked her up, and took her to see Dr. Jordan. That set in place a sequence of many unexpected things. The plan to someday in the future have a corneal transplant arrived with a vengeance. Her cornea, indeed, was perforated, and leaking. Dr. Jordan said we needed to see a corneal specialist THAT VERY DAY. The closest corneal specialist is in Springfield, but he works for the competition, and is out-of-network. That left us with Kansas City or perhaps St. Louis. The corneal specialist who had performed the INTACS implant was in-network (actually in our non-regional network, as our primary network covers only 26 counties in and around Springfield, MO). He could not see her that very day, but made an appointment for Tuesday morning. He had instructed for her to fast after midnight, so that she would be ready for surgery. He also made certain to have a cornea from the organ bank. We saw him on Tuesday morning, and basically, he told us that “the cornea is shot,” requiring an immediate cornea transplant. The particular procedure is a full thickness corneal transplant, known by its scientific name, Penetrating Keratoplasty. You can read about the procedure from the very webpages of the surgeon by clicking on the link above.
We checked into a hotel, so she could get some rest (we had reservations, but they generously allowed us to check in early so she could rest before the procedure). She couldn’t eat or drink, but I could. I went to grab some lunch. Later in the afternoon, we checked into the Deer Creek Surgery Center, and she received a corneal transplant.
She did NOT rest well that night. We were to return to the surgeon’s clinic the next morning at 8:45, to be seen by his colleague, an optometrist. In the case that the surgeon might be needed, we would have been sent back to the surgery center, as the surgeon was performing surgery there that next morning. The optometrist saw something alarming, but she was not sent to the corneal specialist/surgeon, but rather to a retinal specialist. There was suspected infection, perhaps at the rear of the eye. The correct thing was to be referred to a retinal specialist. Though she had eaten breakfast, she was instructed not to eat or drink anything else, in case she would be scheduled for another surgery.
What was particularly concerning was the intraocular eye pressure, which was at an alarm rate of 52 mmHg (millimeters of mercury). It was suspected that such a high IOP could be caused by the presence of an infection. The infection must be treated swiftly.
We were sent to the clinic of Dr. Ravi S. J. Singh. He squeezed us in and because the IOP was so high, he recommended a surgery to treat suspected infection at the rear of the eye (retina). There is a surgery center in the same building where his clinic is, but they were very busy. Dr. Singh checked with a colleague who was performing surgeries there that afternoon, Dr. Steven Cohen, to see if he could squeeze in another surgery. He was unable to do that, which meant, that she would need to wait until after the office of Retina Associates closed for the day (6 PM), and Dr. Singh, himself, would perform the surgery at the hospital next door, Shawnee Mission Medical Center, part of the Adventist Health System. We were to check in at the hospital at 4 pm, for a procedure after 6 pm. We called the same hotel where we had stayed the night before, explained that we had checked out because we thought we would be going home, but needed to stay another night, and could we please check in early, so she could get some rest before the procedure. Her IOP was very elevated, which was causing a tremendous headache. We checked into the hotel, and I left her to rest while, for the second day in a row, I went to have some lunch.
The procedure to be done was vitrectomy, which extracts part of the liquid in the eye, from which cultures are sent to a lab for analysis. Another by-product of the procedure is to reduce the IOP, thus alleviating the pulsing headaches. At the same time, an intravitreal injection (IVT) is done, sending a wide-spectrum antibiotic to the suspected infected area in the rear of the eye. The surgeon said that the procedure definitely would reduce the IOP, and she would feel better! When he spoke with me post-surgery, he told me that there was evidence of an aggressive infection, and the procedure was certainly the correct treatment.
We went back to the hotel, where Rose rested very well. One disappointing thing was that we were to see the surgeon the very next day (Thanksgiving Day), but not until 4 PM. Later it was moved up to 2:30 PM. We were able to check out of the hotel a little later than the normal check out time (12:30 instead of 11:00). We went to Denny’s where I ordered the 55+ (Senior) Thanksgiving Dinner. Rose (who doesn’t particularly like turkey) had part of a Club Sandwich. Then we went to the clinic, hoping that we might see the surgeon ahead of 2:30, because in Joplin, about 35 members of our extended family were gathering at GNPI for a Thanksgiving Dinner. We hoped to arrive before the group dispersed.
The report we received that Thursday afternoon was NOT encouraging. In fact, it was very discouraging. Her intraocular pressure was much improved, measuring 29 mmHg. Her pulsing headache was not there. That was a good sign, that the eye was responding to the antibiotic. What was discouraging, however, was that there was no evidence of vision from that eye, at all! The doctor had her cover the other eye, and asked her to identify when she could see light. She failed the test royally. I was incredibly saddened, but watched silently. He reiterated what he had told me the evening before: 1) the principal goal was to save the eye; 2) restoration of vision was a secondary goal. The reality of the possibility came crashing down. Perhaps she would not regain vision.
Rose posted on Facebook: “Not positive news today. Thanks for your prayers. Almost to Joplin. Return to Kansas City and retina doctor on Saturday morning. Happy Thanksgiving.” An insightful friend sent me a message, “So give it to me in a nutshell. Could she lose her vision?”
Yes, she could lose her vision. I may have shared in a short text exchange more than I should have. Before the corneal transplant, we had to sign Informed Consent. The very first item under “Complications of Surgery” is infection. Specifically, it says:
Infection: One of the most serious complications in any eye surgery is infection within the eye. While infection is very rare, it can lead to the loss of your vision and even the loss of your eye.
So, today (Saturday, Nov. 25) we returned to Kansas City to see Dr. Singh. Her IOP was BELOW NORMAL (5 mmHg), which was due to one of the eye drops he had prescribed for her, specifically designed to reduce IOP. She will no longer use those drops, and hopefully we will see her IOP stabilize into normal ranges. The most encouraging thing, however, was that even though she failed the “tell me when you see a light” test on Thursday, she ACED IT TODAY! I was very much encouraged. Dr. Singh, said, “She’s not out of the water yet, but this is very encouraging.” It is definitely a step in the right direction. She reported to him that her sensitivity to light (pain) was also diminished today. That good report may have been premature. By the time we returned to Joplin, driving where the sun was shining in her car window, some of the sensitivity (pain) to light had returned.
We will call his office on Monday morning, and speak to his nurse, who will generate some sort of letter for FMLA (Family and Medical Leave Act). He has said that she should not work for at least the next two weeks. We will make another trip to Kansas City to see Dr. Singh again on Wednesday. We are hopeful that she will continue to make progress, that her sensitivity (pain) to light will diminish, and that the vision will return in the left eye.
We are extremely thankful for the prayers that have been offered on her behalf. We are extremely thankful to have health insurance that not only covers these procedures, but that we could schedule the emergency procedures when we needed them. God has indeed been good to us. We trust in him.