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Sorry for the serious post. I promise I will be fun again soon. - Walking on the Edge
I don't really have a plan...
foresthouse
foresthouse
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.

...

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

Tags: , ,
Trixie feels: worried worried

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Comments
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emmacmf From: emmacmf Date: September 14th, 2010 07:58 pm (UTC) (current file)
Oh my god, that is a legitimately scary thing for you to be going through. *hugs*
foresthouse From: foresthouse Date: September 15th, 2010 04:47 am (UTC) (current file)
*hugs* Thanks.
laurelin_kit From: laurelin_kit Date: September 14th, 2010 08:13 pm (UTC) (current file)
Modern medicine is fucking amazing. But stuff like this is always scary. We all love you too.
foresthouse From: foresthouse Date: September 15th, 2010 04:48 am (UTC) (current file)
Aw. Thanks. :)
cutebutpsycho99 From: cutebutpsycho99 Date: September 14th, 2010 08:20 pm (UTC) (current file)
Holy shit. You sound like a friend of mine (who also had hard super-contacts, as she calls them).

I hope you'll be fine. I'm thinking about you.
foresthouse From: foresthouse Date: September 15th, 2010 04:48 am (UTC) (current file)
Thanks. It's nice to know. I will keep you updated!
skyblade From: skyblade Date: September 14th, 2010 08:43 pm (UTC) (current file)
Obviously, I wish you the best of luck. It can be very scary to have frequent pains, the fear of losing parts of you, and the money issues.
foresthouse From: foresthouse Date: September 15th, 2010 04:49 am (UTC) (current file)
Thanks, I appreciate it.
lberghol From: lberghol Date: September 14th, 2010 08:52 pm (UTC) (current file)
Aw hun!! *HUUUUGZ* I am so so sorry! I know how horrible eye problems and medical costs can be! The one thing I will say is to make sure you get a good surgeon that you can rely on and trust. Eye surgery is not something you want to fool with, and I know from experience that the right doctor can make all the difference.

When I had my surgeries for glaucoma my parents took me to Wills Eye Hospital in Philly (which I believe is still the best eye hosp. in the country) and it was the best experience eye surgery could possibly be. My mother was just recently back there for surgery on her retina and a cataract operation, and those went smoothly as well. I can't say enough good things about them, and they aren't far from Jersey so it might be worth looking into.

If you ever need to talk punkin just let me know! *HUUUGZ*

Edited at 2010-09-14 08:54 pm (UTC)
foresthouse From: foresthouse Date: September 15th, 2010 04:53 am (UTC) (current file)
Thanks so much. *hugs*

I've had 3 people (including my long-time doctor from NJ) recommend the Wills Eye Center thus far. However, he also recommends the center at Johns Hopkins, which is much closer to me and therefore would be a more likely choice to allow for the follow-up visits that are necessary to any treatment/surgery for this. I will look into all options carefully.

I didn't know you had surgery for glaucoma - I'm glad it turned out well (and your mom's surgeries).

My doc from home (via my mom relaying their conversation) has been very encouraging about the success rates of these sorts of operations. Although I can't go to him regularly anymore, being so far away, he was my doctor from when I was 9 (!) through college, and diagnosed the disease. My second consultation will be with the eye surgeon in his office (looks like it will be after I do the clinical trial consultation, the way schedules are going).

I am hoping for the best. Thanks for the support.
spectralbovine From: spectralbovine Date: September 14th, 2010 08:53 pm (UTC) (current file)
Oh, man. Any disease that begins with "degenerative" is no good at all, I'm sorry. (...But at least you have something in common with Terry Pratchett?) That sounds like a very painful thing to live with. They're your EYES, after all. And I can't imagine surgery on your eyes, aaaah, yeah.

I hope you can find the right procedure/treatment and the money to pay for it. *hugs*

Edited at 2010-09-14 08:54 pm (UTC)
foresthouse From: foresthouse Date: September 15th, 2010 04:55 am (UTC) (current file)
Thanks. It is rather difficult, and in all honesty, if the surgery was *successful*, it would likely be a big relief and improve my "quality of living" as they say. ...It's the risks, and the money for the operation(s), that are most on my mind right now.

But I firmly believe that things have a way of working out. We shall see what happens. *hugs*
snacky From: snacky Date: September 14th, 2010 09:05 pm (UTC) (current file)
Oh man, that is so scary. I'm sorry! And the state of healthcare is just awful, and it's terrible you have to deal with that worry on top of the health issue.

Thinking good thoughts and sending good vibes to you! *hugs*
foresthouse From: foresthouse Date: September 15th, 2010 04:56 am (UTC) (current file)
Thanks! I accept all good vibes and thoughts!! :)

Yeah, the healthcare/funds for such things are a big worry. But, hey, enough good thoughts and surely things will be ok, right? Right.

*hugs*
(Deleted comment)
foresthouse From: foresthouse Date: September 15th, 2010 04:56 am (UTC) (current file)
Thanks. I appreciate that, I really do.
cill_ros From: cill_ros Date: September 14th, 2010 09:59 pm (UTC) (current file)
I don't envy you having to deal with this, but I'm sure everything will turn out well. Good luck for the procedure and recovery, and I hope to see you back posting again in the not-too-distant future.
foresthouse From: foresthouse Date: September 15th, 2010 04:57 am (UTC) (current file)
I am trying to go with that positive attitude, too.

Well, fortunately (maybe?) I am not going to be having surgery quite yet - we need to figure out the options and everything (and how to pay for it!!) first. So I'll still be around for awhile at least before that.
pathology_doc From: pathology_doc Date: September 14th, 2010 10:09 pm (UTC) (current file)
Ow, goddamnit that sucks.

Hope it all goes well for you.
foresthouse From: foresthouse Date: September 15th, 2010 04:57 am (UTC) (current file)
Thanks very much.
(Deleted comment)
foresthouse From: foresthouse Date: September 15th, 2010 04:58 am (UTC) (current file)
Yay, good eyeball vibes! Thank you! I appreciate the good wishes.

I will keep you posted - not much will be happening until I go see the clinical trials people, I think, unless my doc has settled on a consulting surgeon before then. We'll see.
kittenscurious From: kittenscurious Date: September 14th, 2010 11:29 pm (UTC) (current file)
Oh man, my eyes hurt just reading about all that. I am SO sorry. But you will be able to figure everything out with the money and insurance and whatnot. Everything will work out. &hearts
foresthouse From: foresthouse Date: September 15th, 2010 04:59 am (UTC) (current file)
Yes, positive thinking! Thanks for your sympathies.
poinsley From: poinsley Date: September 14th, 2010 11:51 pm (UTC) (current file)
My mom's friend has something similar (maybe even the same thing), as she always has to wear hard contacts. She did have a corneal transplant for one eye a few months ago, and will be getting the other soon (if not already). She had to do them one at a time for a reason I forget. But she did take well to the new cornea.

I'm so sorry that you are going through this. But I think it will all be able to work out. And while there is a threat of rejection, I think the corneal transplant would be very helpful.
foresthouse From: foresthouse Date: September 15th, 2010 05:00 am (UTC) (current file)
That's good to hear, at least.

And thanks for the sympathy. Yes, I think IF it went well, the surgery might actually be a great relief and improvement. It's just the risk and money I'm concerned about. But we shall see.
(Deleted comment)
foresthouse From: foresthouse Date: September 15th, 2010 05:01 am (UTC) (current file)

Re: bah

Ohhhh, you. You made me laugh! Hee. I will put in my order for cyborg eyes immediately!

Thanks for your offer of help - it is entirely possible I may need to take you up on it at some point, although I hope to be able to get along on my own when whatever needs to be done is done. We shall see. But thanks, seriously. :)
(Deleted comment)
eventide82 From: eventide82 Date: September 15th, 2010 12:51 am (UTC) (current file)
Oh goodness, I'm so sorry that you're going through this. Surgery is scary, and eye surgery is especially scary, but I'm sure your doctor will find you the best damn eye surgeon there is.

I'll be thinking of you and hoping for a positive outcome.
ellen_datlow From: ellen_datlow Date: September 15th, 2010 01:55 am (UTC) (current file)
How frightening for you. All my hopes and love.
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