It's amazing how far Eric has come in the last year. This time last year we began to see some great changes in Erics labs. A few scary moments throughout the year, but since Eric's pneumonia in the summer, his inflammation has gone down.
Our first appointment was at 8:15 with Dr.Essex. It had been a while since we last saw him. We're pretty much on a maintenance schedule with him now that we believe Eric's HLH is in remission. We had some lab work done to see where he stood from last month when it was discovered that he had a slight pneumonia. Below you can see two of the main number we follow with the Quest iPhone app since Eric has been an outpatient in May 2012. You can see the high white cell count at 25.9 in February when Eric went to the ER and had a Still's Disease flare up. Most notably in the ferritin was 1385 last month when Eric had some inflammation in his lungs. Both of them are still out of 'normal' range, but show a trend that has been much more usual for the diseases that Eric has and shows that he is once again on the mend.
The increased counts usually relate to his Still's Disease being managed well, but not curing him of the pain and inflammation it causes.
We spent some time back in the Temple cafeteria, which has pretty decent hospital food - and i'm sure Tom would agree that it kind of feels like comfort food after eating it for 3 months! It was breakfast still so we both Enjoyed their awesome Texas style french toast with Strawberries on top! Yum! We hoped to see many familiar faces, but then realized many of those were fellows and they have all graduated and moved on.
The afternoon was filled with a whole lot of waiting! Eric had a follow up CT scan on his chest to check his lungs and get an idea how his liver and spleen are. Last check his spleen was still enlarged, which is a symptom of HLH & Still's Disease as is monitoring the white cell and ferritin counts. At times, it can be quite confusing to see if it is a Still's flare or the dreaded HLH returning.
After that he had a breathing test where they motored his oxygen levels while exercising to make sure he was not losing any during those times.
We have not received final results on the last two, but think they went well. Overall, this long, boring day was a positive marker for Eric's health going forward.
Eric was diagnosed with HLH & Still's Disease at 27 years old in 2012 and given only a 5% chance to live. This is his journey.
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