September 14th, 2010

trixie lounging

Sorry for the serious post. I promise I will be fun again soon.

We're going to talk today about something I don't usually discuss, because really, there's been no point in mentioning it until now. It's something I live with, as many people live with health and medical problems *much* more extreme than mine, and I just deal with my own medical issues, such as they are, as part of my daily life.

But now the time has come when I can't really avoid talking about the medical issue I've got, which is a degenerative eye disease called keratoconus. Keratoconus is, as Wikipedia explains, "a degenerative disorder of the eye in which structural changes within the cornea cause it to thin and change to a more conical shape than its normal gradual curve." It also frequently causes the thickest part of your cornea, which should be in the center, to actually end up towards the edge of the cornea (mine are thickest towards the bottom). They don't actually know what causes the disease, although a genetic link is apparently likely (though to our knowledge no one in my family has it). The disease can affect eyesight in stranger ways that the usual abnormalities corrected with glasses or contacts, such as multiple "ghost" images around an object, streaking and flaring around light sources, and sensitivity to light. I have all of the above, which can be very frustrating to deal with. I also have what I'd describe as a "cloudiness" problem, which sometimes makes it more difficult to see things clearly with my right eye (the weaker one) since they sometimes appear...lighter, as if looking through a very, very thin bit of white tissue paper. This comes and goes, depending on factors such as how tired I am.

I was diagnosed with keratoconus during college, and have been wearing hard (rigid gas permeable) contacts (instead of the soft contacts I used to wear) ever since. This is necessary because with the ridges, scarring, and malformation of a cornea with keratoconus, the hard contact serves to create the proper shape of what the cornea *should* be, and then the liquid in one's eye fills in the gaps, making it possible to correct the vision. (A soft contact just forms to the shape of the actual cornea, and so does not correct enough due to the ridges.) It's also necessary, in my case at least, to use what looks like a tiny suction cup to remove the contacts each night, because they just won't come out on their own. FYI, it is rather painful. (I should also note that because of the advanced nature of my keratoconus, it is impossible to correct with glasses. I do have a pair, which I wear when the hard contacts become absolutely unbearable, or right before bed, but they literally only correct about 50% of what they should, and I can't function very normally when wearing them.) If I had any kind of choice, I'd go back to glasses (I had them for awhile before the diagnosis, although I hated the lack of good peripheral vision), because the hard contacts, due to the corneal malformation, can be extremely and frequently painful (think stabbing pain, at unexpected moments, almost every day). In fact, at this very moment, I am in pain, even though my doctor and I are in the midst of yet another fitting for new contacts (we do this at least a couple of times a year now). The right contact, which is in its second iteration this time around, is "almost right," but we are going for a third iteration, as we generally end up having to, because - well, not to disturb anyone with needle/eye phobias, but because every now and again throughout the day right now, it feels like I'm being stabbed in the eye with a needle. The contacts also make my eyes very dry (I seriously panic if I realize I've forgotten my eyedrops when out somewhere, because it's so uncomfortable when my eyes are that dry, and the contacts get cloudy and hard to see through. You don't even want to know how many bottles of eyedrops I go through a month.) These issues also sometimes cause eye strain-related headaches, which have been getting more frequent.

Up until now, despite the vision issues I've described above, with hard contacts we've been able to almost entirely correct my vision, to the point where it's in the "normal" range and I can do anything others can do, including safely drive and the like. I am very glad of this, because my vision is very precious to me - I love looking at nature, and art, and beautiful things. I would be heartbroken to lose the ability to see the wonders of this world, and am glad I still have that ability at this time.

But the most unfortunate thing about keratoconus is that although for some people, it will plateau, and the use of hard contacts will be sufficient to correct vision to an acceptable level, for others, the corneas continue to deteriorate, typically at a different rate (i.e. one eye's vision is worse than the other), until they reach a point where contacts can no longer correct, or the contacts are too painful to wear because of the scarring and malformation of the cornea, or both.

I have reached that point on both counts.

The "good" news is that my left eye, being the stronger one, is still doing ok with the hard contacts at the moment (although that may not last). The bad news is that the right one is not, and I am going to have to have surgery. Currently, my eye doctor is in the process of talking to other local doctors and surgeons, to see who the best surgeon might be, and to set up a consultation for me. The consultation will help us determine if I will be having a corneal transplant (most common) or another, more expensive but sometimes less risky type of surgery (there are a few options). Whichever surgery turns out to be best, I am (understatement) not looking forward to this. I am generally loathe to admit to fear, but I will tell you all right now: this scares the ever-living heck out of me. Corneal transplant surgery, for instance, while not being the most dangerous type of surgery in the world, can have complications, and once the surgery is done, the patient has to beware of rejection of the cornea for the rest of her life. While the procedure is an outpatient procedure, and they say a person with a desk job should be able to go back to it within a month or six weeks, the total recovery time (including a follow-up visit to remove the stitches, ack) is at least 18 months. A year and a half. I...am not looking forward to that possibility. At all. Well, I mean, as I said above: I'm just plain scared. What if it doesn't work (i.e. correct properly)? What if something goes wrong? What if there's rejection? Even if all goes right, what is my quality of living going to be during that recovery time? What is my vision going to be in the end? (Often even after the transplant glasses or contacts are still needed to correct, and of course my left eye will still have the keratoconus.) These are just a few of my worries.

In the realm of alternatives to corneal transplant surgery, my dad has alerted me to an ongoing clinical trial for an experimental treatment I've read about before, another kind of surgery called corneal collagen crosslinking. This is a promising alternative, because it is a procedure of only a few days, with less acute recovery time out of work (although the ongoing recovery time is still long, like with transplants), and can, if it works, halt the deterioration of the cornea and even sometimes slightly improve vision. It's also got a pretty good track record thus far. However, as I said - it's a clinical trial. Which means that, a) insurance will not pay for the procedure, should that be the best option for me; and b) it may have more risks associated with it.

My biggest worry, aside from the actual surgery and physical risks, and it IS a big one, for me, is the money. Let's be frank for a minute: yes, I am an attorney. But no, I don't (at this time) have a posh job that allows me to put some savings away for things like this, nor have I in the past. I started my career as a law clerk, which is a very educationally valuable experience, and prestigious, but is also one of the lowest-paying salaried jobs an attorney can have (this is supposedly made up for by the experience and prestige. The jury's still out on that one in my opinion). What I DO have is bills and a LOT of law school debt, that, due to the economy having been what it was and still sort of is lately, I have not been able to pay down very much. In fact, with my current job, a (long-term) temporary position, which was the best available after nine straight months of unemployment last year (literally NO ONE was hiring), I make barely enough to pay the basic bills, along with my law school loan payments each month (these are the real terror - they are huge and not going anywhere anytime soon), and I have no vacation days, sick days, health insurance, or other benefits through my job. Yes, I pay for individual health insurance (another monthly bill) but it's pretty lame (because that's the best you can get if you aren't getting it through your job). I am not sure yet how much it will cover for something like transplant surgery, although of course I am going to research that post-haste. And it definitely doesn't cover the recovery time away from work. And, of course, if it turns out that the aforementioned clinical trial is my best option...well, the cost is $4,000 per eye, and it's not covered by insurance at all. So...needless to say, I'm a little anxious about all of this (Understatement of the Year Award, anyone?).

So, where do I go from here? Well, at the present time, my doctor here is researching the best local surgeon, and I am scheduling an appointment for a second opinion/consultation with an eye surgeon in New Jersey as well, in the office that originally diagnosed the disease (although I do not expect the prognosis to differ). I have also scheduled a consultation for the crosslinking clinical trials in Maryland (I don't even know yet if I am eligible). I am going to start looking into the insurance and costs of everything this weekend. And I am going to, above all, try to remain calm and tell myself that, just like everything else, I can handle this, and everything will eventually turn out ok.

Again, sorry to be a downer, folks. I just felt like this was something I had to write about, and something people might like to know, as I suspect it will eventually be affecting all aspects of my life for awhile, including my presence online.

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And just so you know, LJ friends? I love you all, and hope that if I do have to be away from you at some point, it won't be for long. xo