Anemia of Chronic Disease

Today was a very discouraging day for Kourtney and I. Kourtney had blood work drawn before her iron infusion and we found out that her hemoglobin is in her boots still and has remained unchanged since her blood work from last month. This is the shortest amount of time between iron infusions and the least amount of change. This means her anemia has gone from iron deficiency anemia to Anemia of Chronic Disease(ACD).

Basically the best way to describe ACD that Kourtney has enough iron stores, yet her bone marrow is so overwhelmed that it cannot work hard enough to transfer the iron from circulating iron to "stored" iron. It is the stored iron that the body uses not the circulating iron. Only in the last few years has ACD been understood at a molecular level and fortunately for us there are ways to increase the hemoglobin. Kourtney still needs the iron but the levels need to be monitored so that the iron does not accumulate in her system and cause toxicity in the heart and liver.

If there was a bright side to our day, it was the hematologist that was covering for Dr. Davis. He was from London and has treated many children and adults with EB. He was very impressed by Kourtney's growth and development and her skin. He said that we had to be grateful that she was able to have IV's because in most children with EB it is very difficult to find veins. His wife is a nephrologist (a kidney doctor), they have a good understanding of ACD so he was going to speak to her about how much iron Kourtney needs to be on and also about getting her started on EPO (a hormone produced by the kidneys to make red blood cells). EPO is what athletes use when they "blood dope". Kourtney's kidneys are working well but giving her EPO will help stimulate RBC production. So.....hopefully it will help. The hematologist is looking at a long term goal for Kourtney and wants to monitor for the next couple of months before starting Kourtney on this. He is speculating and giving us some Hope that Kourtney's hemoglobin may stabilize on its own, since her skin has settled down so much over the last 6 weeks.

Yes, Kourtney's skin is doing well, but she does find it hard to walk and really enjoy life like she used to due to her anemia issues. We have to push her to play Wii or walk around the house. Lexi makes her smile and she is able to bend down far enough to scratch her head. When we arrived home from Children's today Lexi nuzzled up next to her and gave her a huge leg hug . . . it made her feel so good. Kourtney remains very stooped when she walks but straightens out considerably after a swim in the pool or playing on the Wii.

Yesterday Lexi went and to the "groomers". As Todd put it, she looked like someone from the Gaither Homecoming Tour. Her hair was so fluffy and soft. Tomorrow we are starting doggie school. It will be a family learning curve to get this puppy trained. She has been very good, but we want to make sure we get her trained right and we are all on the same page.