Florida, Fluids, and Fatigue

Well, we managed to make it to Savannah and Florida last week. We spent one night in Savannah. I had never been, but had been told it was a small Charleston. It really was!! It was very charming. We dined on the riverfront at the Chart House Restaurant and had a very relaxing evening. The streets all have squares every few blocks which reminded Jason and me of Venice. The houses were very old and beautiful like the ones in Charleston. I wish we could have stayed there longer.

We headed to Florida and went from coast to coast. Jason had never seen the Gulf Coast, so we went to Tampa and St. Pete Beach and then came back to Daytona. The difference in the water temperature on each coast was amazing. St. Pete Beach felt like bath water.. it was THAT warm. Daytona was as cold as any south Atlantic beach.. very cold because of the north Atlantic waters drifting south. I have stayed in St. Pete Beach many times before, and we are planning on going back next year and taking Casey for a week. She was in the OBX all week with her dad and his entire family last week. She had a blast. Casey's dad flew them out there, so they were able to get there in 2 1/2 hours instead of 7 1/2. Because the roads going to the OBX aren't that great, it takes sooo long to get there from where I live.. which is in the same state.

We will be heading to the beach with my family on Saturday. I am a little hesitant to go away after the week I've had. Monday morning I had an appointment with my nephrologist in Charlotte. When I woke up, I wasn't feeling well, but just thought I hadn't gotten enough sleep. After arriving at the doc's office, I started getting very dizzy and feeling like I was going to pass out. They took my blood pressure and it was 80/40. The doc came in and said I was very dehydrated, so they gave me a liter of fluid there in the office. I was so thankful they had the supplies and the staff there available to access my port. We were there for 3 hours so that I could get fluid. He then asked if I was feeling ok, and I said that I was much better, so he sent me home.

Later that day, I started running a fever, and was feeling horrible, so I eventually went to the ER. My new port had been more sore than the ones in the past, so I thought it might have become infected. They just said I was dehydrated again and had some kind of virus they thought. They gave me more fluids. They also said my hemoglobin was only 7.7, which is very low. This is a major reason I have been having so much fatigue. My nephrologist called again the next day and said that they were going to start me on IV iron when I got back from the beach. They won't do a blood transfusion, because it can interfere with my compatibility with my mom (as far as her being a match to me in order to give me a kidney).

Tomorrow I am going to Duke for a follow-up appointment. My weight has gotten so low that I'm afraid he is going to recommend another feeding tube. I had a g tube prior to my lung transplant that was removed about 3 months post-transplant. My nephrologist talked about putting me on a few months of dialysis soon, to help me gain some strength and some weight before my kidney transplant. I will see him again in a couple of weeks to discuss that.

We just bought a new camera and I am so excited. It's the Canon Digital Rebel XSi. We have been without a camera for way too long now. We have a really cheap one that my dad found at a yard sale, but it doesn't take good pictures of course. The one we bought is very nice, and I just hope I can figure out how to use it. I will probably be reading the manual all the way to the beach. Jason prefers to video everything, but I would rather have pictures. The video camera is basically his and he says the camera is my birthday present.

That's all I've got for now!