On to Plan B

I’ve been spending a lot of time hiding inside my house lately. I still get out for knitting group once a week, and I’ve had some local excursions with friends here and there, but mostly I’ve been rationing my energy for the big eye surgery late last month.

Everything happened as planned and/or advised. My insurance company rejected the claim for the surgery, so I paid all the fees out-of-pocket. The costs I had to pick up not only included the surgeon’s fee, anesthesiologist’s fee, and the cost of the device, but also the post-op eye drops at the pharmacy. Thanks for really sticking it to me, healthcare plan! I hold out hope that with the device manufacturer and surgeon’s office continuing to pursue this I will eventually get reimbursed. In the meantime, my savings account is nearly $6,000 lower, BUT I will get cash rewards on the costs ’cause I used a credit card with a 1.5% reward on all purchases. #silverlining

Sadly (the crying and sobbing type of sadly), the procedure did not work for me. There were promising signs at first. The initial post-op visit the day after was good. The doctor was pleased with the pressure drop and he thought everything looked great. One week later I returned for another check. Again, we were really happy with the progress. The pressure had gone up to 16, which is in the desired range, and seems pretty normal for me. (My left eye — the unaffected one — usually has a pressure around there.)

But…but…this week I returned for another post op check and the news was not so good. The pressure was back up to 36, which is way above my target of 20 or less, and about where it was when I was initially diagnosed two years ago. The doctor did something very uncomfortable to my eye with a needle right there in the office (the eye was numbed, but I was still freaked out and required some literal hand-holding by staff), but that didn’t help one bit.

Now I am back on the glaucoma eye drops to bring the pressure down as much as possible. The doc says that I’ve formed a cyst that is preventing the current device from working properly. I’m just too “young and healthy,” as he says.

What’s next? Plan B is to have another surgery so the surgeon can implant yet another drainage device in my eye and remove as much scar tissue as possible.

There are some small mercies this time around. 1) The insurance company should not put up a fuss about paying for this device since it is older tech that’s been around for several years. 2) The surgeon had a cancellation on his calendar, so I won’t have to wait quite as long as he projected. Instead of a surgery date in October or November, I snagged a spot at the end of September.

What if this doesn’t work? I don’t know. There is nothing that can be done about the ICE Syndrome that caused the glaucoma. I don’t think there is any way of predicting how long it will take the glaucoma to progress to the extent I lose all vision in that eye, but that is the inevitable outcome of the disease.

I had all these thoughts that once I had my eye issue taken care of I could focus on getting rid of all the weight I’ve gained from forced inactivity the past couple years. There are no physical reasons I can’t go the gym and start making my body smaller and stronger. But there are other reasons why this isn’t happening for me right now. I’m sad and depressed. I need gentle encouragement, and a partner/friend who is similarly matched would help a lot. I simply don’t have anyone like that in my life right now, and I just can’t muster much energy to tackle that issue.

I can manage to keep most of my work commitments, feed myself and my dog, keep the house clean, and take care of my personal hygiene. Those are the only expectations I can place on myself right now.

So for now, my restorative self-care is mainly allowing myself plenty of naps, short walks with my dog, playing games with my dog at home, knitting and watching streaming entertainment, and reading when it doesn’t tire my eyes too much.

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The eye update

It’s been a while since I’ve written about my right eye. I just saw the local ophthalmologist yesterday for a work up, so now seems like a good time to do it. After seeing the doc I felt like I needed a big warm hug, which is a clue to me that my brain is trying to process through the possibilities we discussed. Writing usually helps me with the process, so here goes.

Way back when I was first diagnosed with I.C.E. Syndrome in October 2015, I thought I would need to have eye surgery within just a few months. In my usual, efficient mind-set, I was thinking I could just slot it in while I was recovering from my hysterectomy in December 2015 and not have to take any additional time off than the 6 weeks I was already scheduled to be out on short-term disability.

That didn’t happen, and in hind sight it was a good thing for several reasons. While it took me many months to adjust to the challenges caused by the corneal swelling and to find a medical regime that worked to keep my intraocular pressure (IOP) in the target range, I probably couldn’t have dealt with another health issue at the time. As it turned out, it was better for me to focus on getting my hormone replacement right, and to deal with the gut issues that kept taking me out of commission.

In the intervening time, I’ve been (mostly) quietly dealing with the progression of this eye disease. There are two doctors involved in my treatment: a local ophthalmologist, and another one in San Francisco who is a glaucoma specialist. The local eye doc is wonderful and can medically manage my condition; the specialist is primarily a surgeon and gets final say on when I’m at a point where surgical intervention is necessary, and which surgical procedure would be best for me.

Once I got the all-clear from the local eye doc, I had an optometry exam and got a new prescription and progressive eyeglasses. That’s helped a bit. One of my challenges, however, can’t be helped by eye gear very much.

My pupil is distorted in my right eye and can’t adjust as much as needed to changing light conditions. This means that moving from darker to lighter environments (or vice versa) is uncomfortable for me. Anytime I’m in brighter light conditions, I feel like my eye is being bombarded with light. (Because it is.) If you’ve ever walked into bright sunlight after being in a dark movie theater and had that “white blindness” feeling, that’s close to what I experience when I move from a dim indoors to outdoors, even on gloomy days. I got the types of lenses that darken in the sun in my eyeglasses, but that can’t take the place of a pupil that can properly dilate. Moving in the opposite direction (light to dark) has its own set of complications.

Cosmetically, the pupil distortion is visible, too, so I sometimes refer to my right eye somewhat jokingly as my “goat eye.” Not all people with I.C.E. Syndrome have visible changes in their iris, but the type of disease I have (Cogan-Reese) does have that result. The iris in my right eye looks darker and more blotchy. I have one dark brown spot in it, which my local eye doc says is actually not eye pigment, but is the actual muscle in my eye; the iris pigment has been completely worn away in that area.

I’m currently on three different eye drops (actually, it’s four meds since one drop is two medications combined in one) and my local eye doc tells me that I’m nearly at the end of the medical management options currently available. I’m going to try using one of the drops three times a day instead of twice a day to see if it reduces the IOP a bit, but that’s the absolute last option open to me medically. None of these meds are cheap, and it’s my bad luck the one he’s suggesting I increase to three times a day is the one that is the most expensive. It was $92 to refill it last time, and that’s with my insurance coverage. Yikes! (Yes, I did ask about a generic option and there is one, so I may start experimenting with it when my next refill is due.)

I had a thorough work up yesterday, including a visual field test and imaging of the optic nerve in both eyes. I’ve had the same tests done in October 2015 and October 2016, so we now have a chart showing how well my vision has been over time. It’s not terrible, but it’s trending downwards. My glaucoma is progressing, and since I’m still “fairly young” (just a few months away from 50) the doctor’s goal is to slow the progression as much as possible. He defers to the glaucoma specialist on making the decision about when to have surgery, but when he sends his notes and the summary of my tests, my local eye doc is clearly going to be suggesting surgical intervention at this point.

The eye doc and I talked over a few other issues and ideas yesterday, too. I asked about other treatments that would get straight to the root of the issue: the abnormal endothelial cells on my cornea which are causing the drainage issues in my eye (and, therefore, the glaucoma). He allowed that while there are surgeries to replace the endothelium, that’s not something that he sees as an option for me, but he’d ask the glaucoma specialist to weigh in.

Another option that the glaucoma doc will need to advise me on is whether it may be worthwhile to try anti-viral medications. While there hasn’t been a lot of research into this disease due to it being rare, some studies have suggested that EBV or HSV may play a role. Local eye doc says these are viruses that are present in most people, however it may be that sampling the eye fluid for them and then treatment with an anti-viral medication is something I can ask the glaucoma doc about.

One more issue the local doc wants the glaucoma specialist to express an opinion on is whether I should start using some eye drops in my left eye, too. I don’t have I.C.E. syndrome in that eye, nor do I have issues with the drainage angles, but I am showing some peripheral vision loss in it. Earlier this year he explained to me that the”cup to disc ratio” in my left eye suggests I’m more likely to develop glaucoma as I age, and since I’m already slowly going blind in my right eye, preserving the vision in my left eye as much as possible is his goal.

I see the glaucoma specialist in about a month, so I’ll know more about next steps then. In the meantime, I’m doing my best to deal with all this info and that I’m likely facing yet another surgery this year. I medicated myself with pizza and wine last night, but I’m thinking that I may need to find a local therapist soon. I’ve been doing my best to remain positive and resilient through all the health issues I’ve faced in the past three years, but sometimes it’s necessary to find professional help.