Thursday, June 18, 2009


June 18, 2009

Dear Friends:

With my browser set at 24 point sized font and constantly titling my head "just right" I'm typing this hoping I'm not typing any words that would embarrass me. I'm learning, the hard way and five months too late that heart disease truly is a systemic (multi-system) illness. Today my ophthalmologist said that the same thing that is happening in my heart is happening in my eyes. And the bad news is that it can't be stopped and will never improve.

Today I went in expecting laser surgery on my right eye but five times I heard "If the doctor decides to do the procedure/" I was confused from the beginning. Then he explained, after looking at today's scan that the desired result of reducing the swelling was accomplished with the precious steroid injection. But neither the laser procedure or the injection improved my sight which means that what I have left in my right eye is all I can hope for. And because my blood pressure is not under control it will continue to worsen.

So then I mentioned my left eye and that ever since my recent hospitalization and several days of overly high blood pressures I have been having problems reading, seeing small things like my pills and reading on the computer. So it was back into the "photo" room and more tests with dye were done on the left eye. When the pictures were compared to ones from seven weeks ago it was evident that the swelling was indeed increasing in my left eye.

This swelling is fluid and lipids (fat particles) that enter the eyes from leaks in the blood vessels. Imagine the eye like a basement filled with pipes for a large apartment building. When those pipes begin to leak in hundreds of different places the basement begins to fill - and this is a picture of my eye. The laser procedure doesn't stop the bleeding like I was told back in March it only reduces the swelling so I'm not looking through the extra fluid and floaters (lipids) that look like hairs on your eyeball.

The solution today was to try to stop the same deterioration that is in the right eye to happen in the left. In other words, catch it before it is too late like it turned out in my right eye.

When the doctor said that what is happening in my heart is now happening in my eyes he meant that my eyes are no longer getting the proper blood and oxygen supply but unfortunately they can't put stents in eyes like they have my heart.

My distant vision is still okay in my left eye but I've lost more of the near vision which affects my computer experience and, of course, reading. I guess a large print subscription to Reader's Digest will be next on my wishlist.

The loss seems to be slow - which is good. And for now there are some simple solutions like increasing the sizes of my fonts, etc. But it is all still disconcerting especially when I can't properly proofread what I have written and I can't see the think red line under misspelled words.

I'm learning to fill my time with things I don't need to seem perfectly to accomplish. I've started crocheting again this time making hats and shawls since I am always cold. And I play card games like Quiddler which I can easily see even without glasses.

Next Tuesday (June 23rd) I will be having appointments with my Endocrinologist, Cardiologist and Pulmonologist on the same day. It may be grueling but it couldn't be helped because of strange scheduling. But there will be some tough discussions about the future, oxygen treatments, air and car travel and a plea for an honest and clear prognosis. Please pray for me AND the doctors as some of these discussions will be difficult.

So this is what the most "advanced and aggressive heart disease ever seen" by my cardiologists looks and acts like. It doesn't restrict itself to the heart and in my case it has already affected my kidneys (and vice versa), my lungs (and again vice versa) and now my eyes - a fact I never knew nor expected. Somehow losing my eyesight is more frightening to me than even losing my life. I know that must sound strange but it is just very difficult to imagine life without seeing even though I know millions of people do so every day.

It is a harsh reality and once again I feel pushed up against a wall of hard acceptance. I only have one prayer request - that I do not lose Faith. That is more important to me than even my sight.

If you've read this far and concluded that I have given up hope of being healed, let me assure you that is far from the case. But I have no problem with stating the truth of where I am physically which still believing in a God Who is sovereign, loving, all powerful and not a tormentor. I will not go into all the reasons I believe I am where I am right now but I will state without meaning to sound arrogant or haughty that I DO believe God heals and I have both seen and personally experienced His healing power in my own life. But I also will not live my life in what I call "spiritual denial" by refusing to admit to or speaking of my physical challenges and weaknesses. Paul asked his followers to not be ashamed of his chains and I am asking you to not be ashamed of my illness. I will write more on this later.

From My Heart,