Monday, July 11, 2005

Developments

Over the weekend, I noticed that my vision was a little off--a couple times, there would be a small blue glowing sphere hovering over things I looked at. That's been happening on and off ever since the permanent blind spot I have first appeared a year and a half ago, and so I didn't worry about it too much, but it's gotten worse yesterday and today. The blind spot that's been there has gotten bigger and I'm having trouble adjusting between dark and light conditions. Driving in to work this morning, when I looked at the sky, it was almost like a thin sheet of rippling water was lying over my eyes, causing tiny waves in the flat plane of the sky here and there. When we had our Monday-morning meeting at work today, I was sitting along the side of the conference room, and the speaker was backlit against windows that had the blinds drawn. When I looked from the speaker to anywhere else, an almost perfect outline, down to the reverse colors, was still lingering on my retinas, for a lot longer than it normally would. It was such a clear outline that stayed there that I was able to see in it the number of fingers the speaker held up as he talked, and I wasn't looking at him--just at the afterimage of him against the flat white wall, red surrounded by a yellow halo.

Needless to say, I'm freaked out by this whole situation.

My lung condition is called histoplasmosis, and it can make you blind if it gets into your bloodstream. It happened to someone I've known since I was about five. He gradually lost his ability to see, over a couple years. When I first had this blind spot show up, I was scared to death, thinking it was the beginning of the end. I had it checked out by a doctor who specializes in eye diseases. He was terrible. I still don't know what he looks like, because every time I see him, I have my eyes dilated so that I can't see his face. I've been to his office three times. His tone of voice is very angry. He told me that all my other doctors (pulmonary specialist, GI, and infectious diseases specialist) were terrible for not warning me that this could happen and that I needed to get all new doctors. He claimed that he tried to contact all of them and none of them responded to him. On my third visit, he said my eyes looked "better" and that I didn't need to see him anymore. That was about ten months ago.

I don't really know what to do. I have an appointment today to see the pulmonary specialist so he can tell me the results of last week's CT scan. I don't think he's ever treated anyone with histoplasmosis before; he tells me that since the condition is stable, there's no need to treat it with the intensive course of IV treatment that the acute phase of the condition requires. So, basically, I have this active infection in my lungs that is going untreated because it's not getting any bigger. I don't know if it's related to the asthma or not; I don't know if the fact that my lungs feel and act *worse* than they did two years ago is because of this infection. The CT scan measures its size, but not its intensity. I don't know if the histoplasmosis is what caused the original blind spot, or if it's causing these new problems. I don't know how to make doctors communicate with one another.

I scheduled an appointment with the eye doctor (same guy as last time, apparently there are very few specialists of his sort in Cincinnati and they're all affiliated with the Cincinnati Eye Institute) for Thursday. Today, I'm going to the appointment this afternoon with the pulmonary guy with a list of questions and the contact info for the eye doctor, and I'm going to ask him my questions and ask that he contact the eye doctor about this.

It stinks that the people you're supposed to go to when you have problems like these, the supposed "experts," either have never treated someone with what you have before, or have terrible bedside manner and act like it's a huge drain on their mental energy and time to treat you in the first place. I just want some answers. I don't want to go blind.

I was so scared this morning about it, turning it over and over in my head--what will happen if I really am going blind? I'll lose my job, for sure; a blind person can't proofread websites. How will we afford the house? What will I do for work? I could sell the car; I wouldn't need that any more for sure. I won't be able to skate anymore. What would be the point of most vacations? You could just put me in a room two miles away and tell me I was in Omaha and I'd never know it. And other thoughts.

I feel a bit better about things now. I've got until Thursday at least before I'll know anything at all. If I'm going blind, I'm going blind. If I'm not, I'm not. There is absolutely zero I can do about it until Thursday, other than what I'm doing, which is planning a question list and trying to get my pulmonary guy to talk to the eye guy. What I can do is enjoy the shimmery look of things, and try not to worry.

Here's hoping I can pull that off.

3 Comments:

At July 11, 2005 12:56 PM, Anonymous M said...

Things you'll still have and will appreciate more: smells (food cooking, people, poo (OK, maybe that's not a plus), flowers, fresh cut grass.), taste (again with the food, the air, the spring, the dew, the fog), sounds (MUSIC, music, music, music).
What you're going through must be scary as hell, and I don't envy you. And I don't have anything useful to say besides keep your chin up and don't sign off on anything until you get the tests back.
Hoping those bastard doctors tell you good news...

 
At July 11, 2005 3:22 PM, Anonymous E said...

Wow, friend. Scary stuff. You'll be in my thoughts this afternoon and until you have all of your answers. I'll try to send out some positive energy your way! Hang tough...

 
At July 18, 2005 9:04 PM, Blogger kb said...

Thanks for dropping by my site. You've scared me now dude. My husband has a CT scheduled for Friday morning. I hope they don't throw around the H word when they read the results.

Doesn't sound like a fun thing to have at all.

I'm glad your not going blind. And how did you like the new Harry Potter book?

 

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