NIH - 3 Month Checkup

This morning, Jo and I were in Bethesda, MD at the NIH for her 3 month checkup. Her platelets had dropped to 43,000 and I wasn't expecting good news.

We spent about 15 minutes with Dr. Young and he had nothing but positive things to say. His first words were, "You are clearly responding [to the ATG]." His second sentence was, "Your bone marrow is definitely producing blood cells." He explained to us that the patients that show this type of response by 3 months or 6 months are the patients that experience the best long-term results.

Dr. Young also explained that Jo could live for the rest of her life at the levels she is currently at. A level of 40,000 to 50,000 platelets is nowhere near normal, but it is a level that does not require transfusions. The only time she would need to be transfused is before any type of surgery, such as is required on her hips. He did say that Jo should start working with the orthopedic surgeons on a plan for her hips that could be implemented as soon as September!

Dr. Young went way over my head with a brief explanation of all the other things in Jo's blood that we are keeping an eye on. There is a lot of stuff happening that isn't considered life-threatening, but it must be watched. The bottom line is that he was extremely pleased with the progress so far and we'll just have to wait and see what happens between now and Jo's 6 month checkup.

The PNH Clones are still in Jo's blood and many of her red blood cells are bursting after they are created, but Dr. Young didn't feel this was a major issue right now. By year's end, a new "miracle drug" will be released that Dr. Young (and Dr. Childs) both believe will control the PNH problem.