March 19, 2007

It is day+46. If you remember from my last update, I walked around Costco last week. Well that was a bad idea because it was too much too soon. I suffered for it, especially the next day. I had no energy and my feet / ankles looked like Nerf footballs from the edema (swelling from trapped fluids around the tissue) for the next couple of days. I just have to learn that as long as I sit around, I feel good. But, I can’t do much physically. My mind is going miles per hour from the effects of the steroids but my body can’t keep up yet.

Yesterday I bent over to plug in an electrical cord and I was stuck there with my feet and both hands on the floor. I couldn’t get up and I didn’t want to go to the floor because it is so hard to get up. I finally made it up after looking like a new born calf trying to stand for the first time. That was another reminder of baby steps, Art, baby steps. I still have to help with my hands as I go up the stairs, but with not nearly as much pressure as when I came home. It will be a red letter day when I can go up all the stairs without using any hands.

My diet is still very restricted and bland, but my appetite is back to full strength. I’m getting tired of chicken, chicken, chicken and I’d really like a salad, but I’m being very cautious because the GvHD was really a bad experience. I do not want to go through that again.

I’m currently taking 34-35 pills of various medicines every day and getting magnesium infusions twice a week. Hopefully I can quit taking so many chemicals soon.

During my last out patient appointment I found out that I probably had a bacterial infection that led to the diarrhea that caused my last trip to the hospital with GvHD. Because the doctor performed biopsies right away they found the start of GvHD very early and were able to get it under control before I felt the full effects.

The nurse practitioner said that mouth, throat, and gut pain for most people with GvHD causes the patient to quit eating. Most patients when GvHD attacks require IV nutrition both while in the hospital and for a while after going home. With IV nutrition my protein stores would be even more depleted as I am now and I would have been much weaker. ONLY GOD

It has been so great to be home. It relieves a lot of pressure on Barbara. We still live day to day, not knowing what God has in store for us. All we do know is that He is in control and has been very gracious to us.

Thanks again for your prayers. You are an important partner in my journey.