Monday, December 8, 2008

Update

I have to continue on IV cancidas through Thursday. Dr. Kebriaei will re-evaluate me then pending my liver function tests. If I'm not able to safely tolerate voriconazole orally, then I'll have to be on IV cancidas for as long as I take Prograf (immunosuppressive). Since I'm taking 7mg of Prograf daily--the most I've ever been on, then the catheter in my chest will remain indefinitely. I'm starting to suspect that I'm either supposed to be learning a lesson in patience or trust.

3 comments:

Renee said...

Hi Ann,

Bummer- seems like you're darned if you do and darned if you don't, huh? You have low magnesium so you try to do everything possible to get that up (the Vit C)....and then that turns out to mess up your liver! Man. As far as the "who knew?" I had no idea Vit C could impact liver enzyme levels. I thought that since it's a water-soluble vitamin you just pee out any excess and the liver doesn't have to worry about it! I wonder what the deal is with that.
Hang in there. You have every right to be upset. Still thinking of you and praying for you.

-Renee

Nancy said...

Ditto to what Renee said. I'm sorry about the enzyme levels. I'm going to email you something that COH gave me. You probably have one from MDA but you can just compare them. Hang in there. love, nancy

Anonymous said...

Hi Ann. It's Judy (Julindy). I wanted to thank you for your so sweet post to me. I didn't know you were even aware of who I was! I have been following you and your journey daily. It's so interesting, isn't all of life? that I started with an empathic feeling for Chris. I could not believe the pain he was in, except for the fact that I had been living it for fourteen years. I had been the basket case, John stoic, brave, always smiling, me throwing up, as you say needing Imodium, and having severe depression. I could not fathom life without him and still can't.But Chris broke my heart. I wanted so much to talk to him and tell him "I get it, I get it". I encouraged him in an email to get professional help. I have no shame about needing a therapist and being on anti-depressants. But of course, as I followed along, I just fell in love with you. You are so funny, so beautiful, so endearing and so, so determined to get better. I worried a lot about you. Then when Chris said "We told them to throw everything at her" I thought, okay, she's gonna make it. You and Chris remind me of John and me. Only we could most likely be your parents. Married 37 years. But like you guys, we have fought like hell to get this disease under control, I have never left John in a hospital room in all these years and we have grown so much closer. I see this in you two. Here's what I see: Someday the phone will wring, and Chris will answer it and say "Hi Buddy,or Hi Cutie" and then say "Sure she's right here" and you'll take the phone, say hello and some sweet little voice will say "Hi Grandma" and you'll smile your beautiful smile with all your false teeth and you'll run a hand over Chris' grey hair. My email is julindy122@gmail.com Please write me some time. I really love you guys. Have a beautiful holiday. Love, Judy