Here is what we do know for sure:
- My vision has once again gotten worse (went from 20/120 last month to 20/150 this month).
- The lesion in my eye is quite large.
- Surgery is NOT an option for me.
- God is in control and He is bigger than all of this. His hands are all over this. He has a plan.
- This is NOT the end of the world, in the grand scheme of things.
Even still, I am scared. I feel very much alone and helpless. At the same time, though, I know there are so many people who love me and are praying for me. The specialist was fairly certain that the hemorrhage is under control. He did have me get one more injection (just to make sure it stays that way). There is a lot that is still unknown about OHS [Ocular Histoplasmosis Syndrome]. He told us last night that before they realized that the Avastin injections were useful in stopping the bleeding, they would just have to let the lesions grow until they went dormant again and then go in to surgically remove all that they could get. It was not a very useful procedure and the results were not often very favorable. So, we are thankful for the advances that led to the Avastin injections. At least, they can try to stop this thing from growing any bigger. My God is bigger than OHS.
Even with my lesion being as big as it is, the specialist cannot understand the vision loss. I should have some vision loss with the lesion, but not as much as I am having. There are two options for why this is happening. So, next month, they will do a dye test where they inject some dye into the blood vessels of my eye to see if there is leakage anywhere else that they cannot see from the tests they have done so far. It is possible that this is the case. If so, we will continue the Avastin injections to see if they will help. If that is the case, Dr. Rafieertary is hopeful that we can get some vision back. That being said, he did tell me yesterday that my vision will never be "what I want it to be" again.
However, the other possibility is that the histoplasmosis has damaged my optic nerve. If this is the case, there is nothing that they can do to make it better. The size and placement of the lesion makes a laser procedure impossible. Trying to repair anything on the optic nerve could lead to total blindness. The dye test next month will get us closer to knowing which of the two scenarios is happening in my eye. Because I am nearsighted, my optic nerve is tilted back. There is no test right now that can tell them for sure if the nerve has been damaged.
I was able to get a picture of the lesion last night, as well as my optic nerve. I will post it later and try to talk you through what you are seeing. For right now, just know that I am okay. I have cried. I have cried a lot. It is scary to think that I might slowly be losing my sight and that it will not come back. It is scary to know that I have the same spots in my left eye that could reactivate at any time. However, there is a peace that comes in knowing that God is in control. I have seen what the power of prayer can do in my own life time and time again. I am not giving up on this. We will continue to do research on our own to see if there are other options for me.
Thank you for your prayers, calls, and text messages. I cannot tell you how it helped me yesterday to know that so many people were praying for me. Thank you for loving me and my family. We are so blessed and this is so little in comparison to what could be happening to us.
Heavenly Father, please reveal Yourself to us in this situation. Show us what You would have us do. Be with Dr. Raff as he determines what to do next. Open doors for us that You would have us go through in this process. Close doors that You want to close. Remind us - remind ME - that You are so much bigger than this. Use this situation for Your glory. Here I am, Father. I am Yours. Help me to remember that You will not leave me nor forsake me. Help me to always be willing to praise You - even right now. Thank you, LORD. Thank you.
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