Still got ‘em by the way. I’m writing this note to explain my virtual absence at the moment and to give a place for people to read what going on so I don’ t drone on and don’t accidentally tell the same people the same stories again & again.
The summary is, I’m having vision problems and the healing is going to take a few weeks and anything that needs me to see, or sit up, is not going to be possible for a while. Read on if you want the history of how this came to be.
Little Kim used to look through the microscope in school and ask the teacher how to adjust it to get rid of the black dot in the center of the field of view. Teacher would look, not see the dot and make some suggestions. I was unable to use adjustments to get rid of the dot, so I just tried to do the work, but was a bit frustrated. I noticed this on binoculars, too, but just figured that’s the way it was for some people looking in binoculars.Sometime, maybe in adulthood I was told I had some congenital cataracts “small ones, you’ve had them all your life, right in the center of your eye.” So these were the black dots I saw as a kid! Congenital means you were born with them. I think when babies are born with these days they try to remove them right away, unless they’re small? Mine were small. But they didn’t stay that way.
About 10 years ago, or a little more, I asked the optometrist about them and was told “you’re young (pfft) and you should wait til you’re older and they get bigger to get them replaced because <good reasons explained to me at the time>.” OK. Subsequent optometrists didn’t see the connection between cataracts in the center of my eye and the fact that my prescription changed in bright light. None asked if there was glare in the day or star effects at night.Last December, I decided to try my theory of my vision problems my optometrist again. She agreed about my thought that the center of eye cataracts were changing my prescription in bright light (e.g. driving) and we took pictures of my eyes, which I sent to my doctor, who gave me a referral to ophthalmology. It had gotten so bad lately – glare and loss of sharp vision – that I was thinking about needing to give up driving — before it got dangerous. Ophthalmologist agreed I had a problem and the info he gave me to review agreed with all the symptoms (except the black dots, which are probably unique to my “spang in the middle of the pupil” location). He said that surgery would correct the symptoms and I would likely have very good vision after removal and implantation of artificial lens. I was excited! There was only a 5% chance of complications. I was concerned… 5% is huge. But, one eye at a time.April 19 I went in for the right eye cornea surgery to remove the cataract… and I fell into the 5%. The cataract wouldn’t come loose and tore the lens capsule and fell into the back of the eye. The corneal surgeon closed up and called the retinal surgeon, who providentially was just coming in, took me at the beginning of her caseload and removed the detritus. She did an “oil change” on my eye and then they worked together to put the new lens in, but not where originally planned. Phew! However, I was pretty well blind in that eye for 3 weeks. The way to think of what caused the blindness is a “snow globe of platelets” I’m told. So dense a cloud of blood cells I couldn’t see til the eye absorbed them. But when it cleared up the week of May 5 it was amazing! Colors. Road signs. Fine print. Needles and leaves on trees. Amazing. I was looking forward, even anxious to the get OK to get the left eye done.Then at the end of last week I saw a shadow in my repaired eye. Over the weekend I wrote my retina surgeon about it. She was concerned and wanted to see me immediately, but I was playing phone tag with staff and didn’t know it. I saw her at the end of the day. I had a detachment on the retina and surgery was scheduled for the next day. Now, I have had a gas bubble placed in my eye. It’s designed to keep my retina pinned against my eyeball so it heals and keeps the fluid (implicated in the detachment) pressed out during the healing. I have to lie down on my left side or my face to keep the bubble where it needs to be for 3 weeks (45 min out of every hour). And no good vision in the eye (bubble in the way) and no air travel until the bubble is gone, which will be longer still.Sincere thanks to all my Facebook friends who have prayed for good outcomes/healine and/or sent well wishes. It was very encouraging. At this point I need patience to lay still, so prayers and exhortations for that are still in order! I know some of you are waiting on my efforts for some joint projects, and well, I’m looking forward to resuming. Typing is hard when you’re sideways.
Update 8/6/18 – pressure still down, but cornea swollen. Bubble from healing the retina is small and diminishing but still there. The news from the cornea/cataract Dr. today is – there are various options to bring the swelling down and repair the lens implant and push back the iris that is contacting the cornea, but I need to see the specialist that does that kind of surgery on Thursday! If the options don’t work, then I’ll need a 5th surgery, cornea replacement (meaning i get someone else’ cornea). The complications continue. I’m going to work on getting the swelling down with drops and see the doc Thurs.
Update – 9/13/18
I’m one month into the two months of “corneal swelling recovery” following the fourth surgery. Good news: scratch on cornea healed, can see the giant letter on the eye chart now. Ongoing: Right eye super blurry since swelling not down much, left eye same old terrible cataract induced glare in outdoor or office light, & with both eyes open blurry double vision – right eye gets closed to enable reading. Also a week of waking up 3:30-4:30 am. I’m currently feeling like a young teen — having to be driven everywhere and cross as two sticks. Next corneal checkup 10/23. Thanks for being connoisseurs of my whine. I appreciate your prayers and especially the example my friends who are facing worse right now with great courage — God bless you.
Update 10/30/18 Went to my cataract surgeon week before last and he certified my cornea hasn’t gotten less foggy or less swollen after 2 months rest (i.e. without the iris jammed into it). He does not expect it will clear up and get better on its own, therefore. Lone good news is the cataract lens is still where they put it 2 months ago!
Oct 30 we saw the corneal surgeon. She is recommending DSEK tissue transplant. This has another (tiny) gas bubble as part of the insertion of the transplant tissue. This time, I’ll have to lay face UP for 24 hours after surgery. There is a chance this may KO the cataract lens implant again! Recovery is a few days constraint in movement followed by 3-6 months normal activity waiting for everything to get as good as it will get. Then I’ll need prescription to correct to like 20/30 or 20/40. Not gonna be the vision I had on June 1. Doc is very experienced; she does 3 or 4 of these a month for the last 6/7 years; only 1 person had tissue rejection, but that was after ignoring eyesight worsening til vision was gone. Rejection can be reversed if caught earlier. I have a second opinion scheduled and may get a third. If you recommend a surgeon who does DSEK/DMEK, please message me privately. Meantime 2 months wait list for operation, so I’m on the list. Just an update. Thanks to all for the prayers and encouragement.
Update 11/20/18 – had a “second opinion” consult on the corneal swelling and frosted glass vision. He examined me and reviewed case notes. Bottom line the DSEK corneal cell transplant is the treatment for my condition. What is my condition? We are born with about 4000 corneal pump cells. They don’t reproduce. As you get older they die off. When you have eye operations it kills some. You need about 1000 min for clear vision. Age, the eye operations and especially the collision of my iris and cornea have me down below that threshold. Given the time elapsed it is clear the cells there aren’t going to wake up and do their job. So, the transplant is necessary. On list for late December.
Update 12/18/18 – day after tomorrow I will have another surgery on my right eye – a partial corneal transplant (DSEK). My surgeon, who by all accounts is expert as can be in this procedure-having done 6-7 a month since they became available in 2012 and is greatly respected by her staff and colleagues says 3-6 months and 20/30-40 vision. And maybe my cataract lens will be dislocated again or other complications. I think she is giving me worst case as my second opinion Dr has high opinion of her skill and says 20/25-30. Both agree Small chance of rejection 1 percent and reversible if caught early. I’m grateful to have the benefit of the care and her skill, as well as the forethought and generosity of the donor whomever he or she may be, God rest the soul. I’m also grateful for your prayers and well wishes. As Tolkien’s Aragorn so often says when considering a fateful outcome “we shall see.” Well, I hope so!
Update 12/24/18 – Good news! My gas bubble is absorbed so between that and the super dilator drop my floppy iris has snapped back in position and no longer in contact with the graft (dispensing with need for immediate operation 6). I’m on track for 3-6 months rest letting the graft bond and the surgery swelling go away and then should be seeing 20/30-40! I’m really hoping it doesn’t take quite so long but good news I’m now set to get better. Again thanks for all the prayers and well wishes. Next checkup 1/17.
Update 1/17/19 – The penultimate update. Saw the doc again. More good news – I was able to read 4-5 lines down the eye chart below the one giant letter that fills the whole screen. Incredibly fuzzy, but not a complete blur. Had my last stitches pulled. Doc says lens is clearing (see below) and will get as good as it will get in 2-5 more months. Then I can get a new prescription; for now I’m going to have a 0 correction lens done so I’m not looking through an overcorrected lens.
Vision is more clear in the main field of view. At the very top and very bottom where there is a frosted glass effect, which will never go away. They can’t replace the full cornea cells top to bottom she said. However, I only see that as a reflection in some lights.
This week I’m reading large print, e.g. signs, including occasionally license plates when they are close. I can see where all the cars and people are on the road. I’m targeting driving later in Feb, unless I bump into someone (or a wall/door) while walking again, which would tell me I’m not safe yet, no matter how I feel. Only in bright daylight at first.
I’ll post again in 2-5 months when I have my new glasses. Thanks again to all of you for your support and prayers through this whole dealio!
Update 6/16/18 – Father’s Day. After waiting way longer than I thought, my right eye vision has stabilized and last week I finally was able to get new glasses. I waited a week to post because there is always an adjustment period with new lenses. Bummer news is left (unoperated eye) is way worse than before the operation (so I’m looking at maybe, maybe doing it in November) and right eye is not correctible to 20/20 as it was June last year before the retinal problem. BUT the really good news is that the new glasses allow me to do computer work normally without constantly adjusting my position and changing my lighting and the font size (zooming the screen, etc.). I really haven’t had the energy to touch a system after fighting a screen all day at work; now I can handle it – look at this post! Also, driving is going very well (I haven’t hit anything) and is also now comfortable in bright light.
My main point is to thank you all for your prayers, well wishes, kindness and humor through the whole thing.