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Keratoconus: Update the Second - Walking on the Edge
I don't really have a plan...
foresthouse
foresthouse
Keratoconus: Update the Second
Sorry guys; I know I should have updated y'all on this already, but I just got so busy (including with the doctor appointments, which took up pretty much a whole day each, and left me surprisingly exhausted) that I haven't had a minute. But. Here's the news:

1) The good news (and it is *very* good) is that I went to see the doctor at the Wilmer Institute, and after a slew of tests, etc., he said that he does not think I am yet at the point where a corneal transplant is necessary. HURRAH. However, with the deterioration in my sight, and in the comfort of the contact lenses, it was still clear to me that something needs to be done. Which leads us to:

2) The good-and-bad-and-good-and-bad-news. The doctor *does* think that I am a very good candidate for the corneal collagen crosslinking trials (good news), and that I should have that procedure done in my right eye as soon as possible (bad news, because - yikes! Surgery!), which may succeed in arresting the degeneration from the disease (good news!) - but as stated before, since this surgery is a clinical trial, insurance will not touch it (bad news).

So...it's a mixed bag, here, is what I'm saying. BUT, in terms of my health (which is more important than how I am going to pay for things, even if sometimes it doesn't seem so), the news is overall positive. I do have to have the crosslinking surgery; but it is a minor surgery compared to the major surgery of a transplant, and has less risk involved, and is very likely to result in the disease progressing no further. Which would be AMAZING. (And I really wish this procedure had been firmly in place when I was first diagnosed, instead of when my eyesight has gotten to this dismal point, but as stated, it's still in trials right now, so it hasn't been around all that long).

Of course I didn't stop there - I then followed up with an appointment with the Washington Eye Center, which is the group actually administering the trial. They put me through another long series of tests, the result of which was the same as I'd been told at the Wilmer Institute - I am a good candidate for the surgery, and I should have it as soon as possible in the right eye. I was also told that if it works in the right eye (which they will know after about 3 months, I believe they said) then I should definitely get it in the left eye as well; which makes sense. So. Since they said "as soon as possible," I've made an appointment for the right eye procedure on October 21. I've got my sister lined up to pick me up afterward, and I'm going tomorrow to get the medication I'll need to take beforehand. Things are moving along. Scarily so, but that doesn't mean it won't turn out to be a good thing in the end.

The big problem I'm left dealing with now is how to afford this. Surgery for each eye is $4,000, and you only have a year to pay it off. I...just don't have the money. I just don't. I've looked at my finances three times, and there's nowhere I can siphon $333 a month (and eventually $666, once they do the second eye) from. I'm up to my eyeballs in debt as it is. So...well...yeah, I just don't know. But I'm going to have the surgery anyway, because there's nothing else I can do. I guess I'll cross the payment bridge when I come to the first bill. Somehow.

Cross your fingers for me, guys.

xo

Tags: , ,
Trixie feels: nervous nervous

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Comments
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lyrainverse From: lyrainverse Date: October 13th, 2010 01:56 am (UTC) (current file)
Good luck!!! I hope everything works out for you.
foresthouse From: foresthouse Date: October 15th, 2010 04:54 am (UTC) (current file)
Thanks so much.
unlucky_bear From: unlucky_bear Date: October 13th, 2010 02:02 am (UTC) (current file)
Good luck! We'll all be pulling for you.
foresthouse From: foresthouse Date: October 15th, 2010 04:54 am (UTC) (current file)
Thanks!
eventide82 From: eventide82 Date: October 13th, 2010 02:02 am (UTC) (current file)
Yes, good luck! It's scary when things move so quickly because you just don't have time to process it and sometimes (for me anyway) I feel like I haven't had the time to think about it too much (which is subconcious code in my brain telling me "But I haven't been able to worry a lot about it yet!).

But still, that's good news about the stage of the disease and the fact that you're a good candidate is also a positive in a not-great situation I guess.

Good luck!
foresthouse From: foresthouse Date: October 15th, 2010 04:56 am (UTC) (current file)
Yes! Things are moving so quickly that it makes me nervous, but I had to take advantage of the time slot they had so as not to have to wait a long time. I'm...still processing it all, I think. And yes, there are some positives here.
elfie_chan From: elfie_chan Date: October 13th, 2010 02:04 am (UTC) (current file)
Best of luck! I hope everything goes well. *big hugs*
foresthouse From: foresthouse Date: October 15th, 2010 04:56 am (UTC) (current file)
Thanks so much. *hugs*
(Deleted comment)
foresthouse From: foresthouse Date: October 15th, 2010 04:58 am (UTC) (current file)
Hey Marshall, thanks for the links. Actually, the place I am going is on those lists - I wish they were offering it for free, but sadly they aren't - and due to location, etc., they are the place I need to go (though I don't know if anywhere else would be cheaper anyway). But really, I do appreciate your looking into things for me like that and thinking of me. Also, we should totally get together sometime soon!
cutebutpsycho99 From: cutebutpsycho99 Date: October 13th, 2010 03:07 am (UTC) (current file)
I have nothing but good thoughts. And suggestions on how to get the money. We might need a getaway car tho. Is Deadpool a good driver?
foresthouse From: foresthouse Date: October 15th, 2010 04:59 am (UTC) (current file)
Thanks. *hug*

Hahaha, define "good." We'd probably get where we were going quickly, but our route might take us through a building or similar. O_o
nixve From: nixve Date: October 13th, 2010 05:02 am (UTC) (current file)
yay for no major transplant surgery! *crosses fingers* Goodluck with it!
foresthouse From: foresthouse Date: October 15th, 2010 04:59 am (UTC) (current file)
Thanks, my dear. *hug* And how are you doing? Going to be in town again anytime soon? :)
prettyh From: prettyh Date: October 13th, 2010 05:21 am (UTC) (current file)
Well, aside from the (rather significant) money thing, that IS great news! ♥ I'm hereby a cheerleader for Team Em!

Is there anything we, as your ~online family~, can do to help offset the costs? Raise some money? Is that something you'd be okay with people doing? 'Cos I'd certainly offer myself up to help if so. ♥
foresthouse From: foresthouse Date: October 15th, 2010 05:02 am (UTC) (current file)
Aw, thanks doll. I like having cheerleaders! (And/or friends thinking good thoughts at me. Anything helps!)

You know...I am ordinarily 100% "no no, I can do it all myself" and proud about things like that, but at this point, I am a bit desperate, so...I don't know. I'm just...not sure how comfortable I am with the idea. Let me think about it? It's very kind of you to offer.

*hugs* ♥

Edited at 2010-10-15 05:02 am (UTC)
txvoodoo From: txvoodoo Date: October 13th, 2010 05:45 am (UTC) (current file)
I'm very glad you're having it done. And I echo what others said here - can we get a donation thing going?
foresthouse From: foresthouse Date: October 15th, 2010 05:04 am (UTC) (current file)
Thanks. And I really appreciate the offer of financial help. It's very kind. In general I am very "I can take care of myself" about things, but given the situation, I'm not seeing a ton of options...let me think about it? I wouldn't ever want people to see me as one of those people who tries to get "money from the internetz" or anything; but I know that you and the others offering obviously don't see it that way, of course. I am not sure. *hugs*
(Deleted comment)
foresthouse From: foresthouse Date: October 15th, 2010 05:04 am (UTC) (current file)
It is rather silly, isn't it? Thanks, my dear. *hugs*
(Deleted comment)
foresthouse From: foresthouse Date: October 15th, 2010 05:05 am (UTC) (current file)
Thanks so much.
emmacmf From: emmacmf Date: October 13th, 2010 10:17 am (UTC) (current file)
It saddens me that you're having to worry about money when you obviously need this surgery.

Fingers firmly crossed.
foresthouse From: foresthouse Date: October 15th, 2010 05:05 am (UTC) (current file)
Thanks! Mine are too. Heh.
(Deleted comment)
foresthouse From: foresthouse Date: October 15th, 2010 05:05 am (UTC) (current file)
Thank you! I accept all good luck wishes and am sure they help.
lady_findel From: lady_findel Date: October 13th, 2010 07:03 pm (UTC) (current file)
Good luck with the cross-linking, dear. I hope it stabilises the right eye, so you won't have to worry about the deterioration anymore. And I'm so happy for you that transplantation is now off the table!

As for lenses, there's the piggy back system I forgot to mention. It involves putting a normal keratoconus lense on a soft lense for comfort. It did not work for me, but it has worked for others.
foresthouse From: foresthouse Date: October 15th, 2010 05:07 am (UTC) (current file)
Thank you for the good wishes.

And I did actually talk to my doctor about that possibility after you mentioned it (I think you did mention it? I know someone did and I thought it was you, so thanks) before. He said that is an option that works for some people; once I have had the procedure and recovered enough to wear contacts again, I am sure we could look into it.
cill_ros From: cill_ros Date: October 13th, 2010 11:06 pm (UTC) (current file)
The best of luck for the surgery. It is scarily soon, but there's less time in which to be worried, I suppose.
foresthouse From: foresthouse Date: October 15th, 2010 05:07 am (UTC) (current file)
Thanks. Yes, that's a good way to look at it.
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