Saturday, August 23, 2008

Update on AIH Happenings

What can I say, but when you cry out to God, and tell him your fears, He will calm them. This isn't something I didn't already know but I guess I needed a reminder.

This past Weds, I had opened my email and found the verse of the day from Air1 radio. It was Hosea 6:3 "Oh, that we might know the Lord! Let us press on to know him. He will respond to us as surely as the arrival of dawn or the coming of rains in early spring." This verse jumped out at me, I realized that in the midst of the last week, I've been on my pity potty feeling sorry for myself, and really scared. I read the verse over and over, and knew it was time to look towards God fully.

So that afternoon I get a call from my doc, I had emailed him and asked him about taking something to sleep, and that I was feeling very bloated and my feet were swollen. Doc called me that afternoon and said he wanted to see me Friday, and set up a CT scan of my abdomen. My feet have been so swollen that I can only wear flip flops, and since I just got the cutest Anne Klein shoes on sale at the outlet I was bummed that I couldn't wear them.

So Thursday morning, after Brett and Brinn went off to work, I sat down to read my bible, and I just started crying out to the Lord, I confessed all of my fears, frustrations, and then accepted God's will whatever it was. Then peace came into my heart again, I didn't know what His will was, but I knew that I could face more, my fear was leaving and being replaced by strength.

So yesterday I headed over to good old Kaiser SC, and was schedule to meet up with doc at noon, and have my ct scan at 1pm. Before that I had to go get my "smoothies" that you drink before your scans. Not to bad, I've endured worse.

Doc was taken back by my feet. I should have taken a picture really for the blog, they really did look funny. He said it was a combination of water retention, and fluid caused from the liver inflammation and the upped dose of prednisone. He said the ct scan would tell us if the fluid was building in my abdomen and he prescribed a diuretic.

So then we talked about the transplant scenario. And let me tell you Hosea 6:3 rang clear. To determine if you are referred out to UCSF to start you into the treatment center there and to be considered for a transplant listing they use a thing called a MELD Score. (Model for end stage Liver Disease) UCSF says in order to send a referral for transplant screening and monitoring your MELD Score should be 15. Doc and his other colleagues have done my meld scores to date and I came up at a 12. Thank you Jesus. This means at this time I won't be referred out. Doc still believes that it's inevitable that I will end up needing a transplant, but he's back on his old time frame of 12 to 15 years after my diagnosis. He said I could hang out at 12 for a while, and even people who are at 15 don't get transplants they just get monitored for the MELD score to go up. I left his office feeling so uplifted, and even my second "smoothie" tasted good.

Then it was off for my ct scan. They put in iodine through and iv tube, that was a weird sensation, it lights up your insides and they took my pictures. It made me tired, gave me a headache, and a bit of a stomach ache but I was better last night.

So I have another blood test next week, and if the numbers improve again like they did last time doc said they lowered my steroid a bit. Yeah cause this level is icky. He also reminded me that I have to stay laying low, and not to deny my body rest, and run myself tired. Which I have many loving friends and family members with Brett leading them all that are now keeping me in check. This means I need to stick to my work schedule, and not go over it. It means my quiet rest time is just that. It's not run around and do errands time. I have many people who have helped Brett and I arrange it so I can go in later to work, so that I can get enough rest to take me through the day.

So praise God. I'm giving him all the glory. This is a path that God has designed for me to walk, I don't always do it perfectly, but I know He doesn't expect me to. He also doesn't leave me to walk it alone. I have my Lord, my family, my friends, and now I've found a support group on Yahoo. Thank you for all the prayers, and support. Keep on praying for my illness to quiet down. I'll let you know next Friday how my blood tests come back.


1 comment:

Lily said...

Oh Carol, you are such a strong, beautiful soul. I'm so glad that you aren't letting this disease beat you down or question your faith