Today started out like any other day for Eric. Morning alarm, stiff joints, trouble getting out of bed = something for the birds or a day when us "healthy" people would normally throw in the towel and call out sick. Eric worked and we went to Temple for our next check up with rheumatology. It was bittersweet because since we see doctors at a university hospital we usually see a fellow and then the attending. As inpatient, Eric had a fantastic fellow Dr.Fischkoff and attending Dr.Berney. Dr.Fischkoff graduated and we got Dr.R and now have moved onto Dr.Z. Dr.Z was knowledgeable and attentive to both diseases which many of you know is not very easy to find.
We discussed lowering dosages and alternative medications and other minor medical issues that need to be determined or rules out by other specialists that may help reduce some symptoms that are a result of "side effects" of the stills disease and lingering issues from being in the initial hospital stay for 3 months and sedated for two of that. Dr.Berney was on vacation and the current attending was a clear reminder of how fragile Erics health was, IS, and ALWAYS WILL BE. Pretty blunt right? For someone like Eric to have a case of Stills & HLH be triggered and spiral so fast and to overcome it is a blessing- one we know we don't take for granted, especially when we have seen so many lost to these very diseases. But overall, her cautiousness was a reminder that there's no place like home and we don't want to do anything that could bring Erics HLH out of remission or cause the dragon to fully awaken from his drunken slumber.
A few weeks ago Eric was feeling more down than normal and we had bloodwork done, Erics ferritin remains at 600+ and 200 is normal for adults. Eric will remain on his medications to control the Stills Disease indefinitely as of now so as not to rock the boat or let the sleeping dragon lye as our fellow Stillsies would say.
A second booster was opened and those who'd like one of these nifty shirts, as seen above on Eric, can buy one knowing the money raised will go to Liam's Lighthouse Foundation to benefit Histiocytosis research at the HLH Center of Excellence and Texas Children's Hospitals. https://www.booster.com/histioawareness2015
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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