Headed back to Cleveland tomorrow and I'm a little anxious to say the least! I am not looking forward to the esophagus test that I have to do tomorrow at 1:30. I can't eat anything from 7 am tomorrow until after the test...which I'm not a breakfast person anyway, so I won't eat anything past dinner tonight. Tomorrow is mainly a bunch of tests and then Wednesday will be the appointments with the doctors. Doug and I won't head out until tomorrow morning since I don't have to be there until 10:30 for bloodwork. My last appointment of the day is at 1:30 for the lovely test...then who knows what. If anyone knows what we can do in Cleveland for the afternoon/evening, please let me know! :)
Wednesday will start out with my usual lung function test and 6 minute walk. I'm a little nervous about those results as well since my lung capacity has decreased 10% in just one years time. We'll meet with the gastro dr. and I'm going to ask him about the possibility of acid reflux surgery. I've found some things online linking acid reflux and my specific lung disease. Acid reflux can aspirate into the lungs and actually cause what's been going on with me. I've been told I have mild reflux, and I've also found that having acid reflux surgery could help improve lung funciton. It's worth a shot, right?!? I'm also going to ask my pulmonologist the same questions in hopes that I could get at least some relief in the meantime. Doug and I will also meet with one of the surgeons and see what he has to say.
We were told the last time we were there in September that the doctors will then all sit down and discuss my case and then decide if it's time to list me or not. I am not sure how long of a process this is...I'm hoping that it won't take too long for a decision as I am so impatient now as it is! :) My blood type is AB+, which is more rare...so maybe that will work in my favor and get me on the list. That is the part that really stinks and is really hard...knowing that someone else has to die in order for me to live. I really wish that there was some other way!
On a happy note, I had a most wonderful weekend full of love and laughter. :) My cousin came in from Montana on Thursday and stayed with us until yesterday morning. It was so great to see her and spend time with her even though it was for a short amount of time. She and I went to pick up our grandpa on Saturday and bring him back to my house for a little while so that we could all visit and he could see his great-grandkids. He will be 88 tomorrow and he looks great! He was telling me that he has cheated death 5 times and told me about each time. He told me that he knows I am strong and that I just have to keep fighting. I told him about my butterfly story and how I know that grandma Neff is always with me.
I'm still that caterpillar...but I'm making my way up that tree hoping to make my cocoon soon! :)
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