Tuesday, July 30, 2013

Just when you thought the appointments were letting up.

Sorry for the late update. Thank you all so much for your love and support!

Friday we went to see the pulmonologist and he showed us Eric's X-ray we took Tuesday in comparison to the one he had in February during his last Still's Disease flare. You could see a small hazy white patch in the bottom of his right lung - it appears to be fluid-like. We could most likely attribute this to allergies or something he picked up. The symptoms started a few days before we left for NY (which was awesome and we have an update coming this week for that at well).

One theory causing the mild chest pains during large breaths is that Eric may have neuropathy up in his chest as well. We know he has some scarring on his lungs from the extended time he was on ventilator support and has a chest tube when his left lung collapsed, as well as the ECMO lines being stitched to his body. We're going to follow up on this at a later date and Eric will begin the recommended dose of his Neurontin again to see if this helps with his chest.

We follow up with rheumatology next week to talk more about the deterioration in his shoulders and what type of shots they will give him. We're hopeful we can reduce the Medrol/Prednisone at that time. We got his labs back from last week and they were ok for the most part, but his CRP went from 2 to 16! And the Ferritin went from the high 600s to 1300+! We'll have labs done again soon for comparison and hope this was a lab error:/ 

In September, Eric is scheduled to get a sleep study again if we can get the insurance to cover it- a CT scan of his lungs and abdomen which will show us his liver and spleen and we can compare from his last CT scan to get an idea how things are healing. He'll also do some exercises and have a blood has exchange draw to see how well he breaths while doing physical activities. For now he is on a 5lb weight lift restriction until his lungs heal up. We also have a follow up with Dr.Essex from hematology in September. Actually the last 3- CT scan, blood gas exchange and hematology are all on the SAME day... Unfortunately, it's what must be done when you're short on leave and you travel 40 minutes to see good doctors :)

Just when we thought the doctors appointments were letting up...

1 week till Eric's 29th Birthday! 

Tuesday, July 23, 2013

Impromptu X-Ray

Eric has been feeling a little better or about the same over the last 6 weeks since our last rheumatology appointment. The days are very tiring for him and nights are often uncomfortable. Shoulder and elbow pains are persistent on a regular basis. He has taken an injectable form of methotrexate over the past 6 weeks as well. It's a higher dose than allowed by pill and he takes it once a week.

Today we have a new fellow rheumatologist and Dr.Shookory who spacialises in Adult MAS as well. Dr.F has left Temple and went to north jersey. He will be missed. The new fellow doctor seems nice and knowledgeable about Still's and how it presents. Lately, Eric has had some headaches and minor chest pains. The headaches appear to be attributed to his sinuses and most likely allergies . He'll continue to be on allergy meds and to try using some Flonase again to see if that helps reduce the headache. As far as the chest pains, the docs advise a chest X-ray just to be safe given the recent past. We have a follow up with Dr.Desai Friday late afternoon and we will be attempting to get a sleep study scheduled again. We had a failed attempt due to the run around the insurance face us last fall.. We follow up with rheumatology in 2 weeks and hope to reduce his Medrol to 2mg at that time. He will also have an injection in his shoulder as well.

Busy day! Waiting for labs then going for our X-ray. 

Histio awareness weekend update coming soon!

Update July 24, 2013 12PM:

The doctor called and said eric has some slight cloudiness in his right lung. Although with the pains at deep breaths and crackling they heard, I suppose it's what we expected. Thankful it's nothing to be admitted over! Antibotics have been ordered and we will pick them up after work today. Hopefully when we visit the pulmonologist (lung dr) on Friday he will hear clear air exchange! -or be less concerned at the least.

Sunday, July 7, 2013

Team Eric to Travel to NYC

We are just two weeks away from joining non-profit Liam's Lighthouse Foundation(LLF) and many others who continue to fight for a cure for Histiocytosis!

The weekend event will take Place in the heart of New York City! We will be participating in 3 of the 4 days of events to take place July 20-23. Our itinerary will include a Meet-and-Greet event at the Marriott Marquis in times Square on Saturday night to kick off the weekend. Sunday morning we'll gather with family to walk in the 1st Annual Liam's Lighthouse Foundation 5k to Fight Histio which will take place along the Hudson River. Team Eric and all the other teams that will join us there have raised over $65,000 this year since the fundraising started in early 2013. July 22nd  we will be standing outside the Today Show which broadcasts on LIVE TV! We along with other warriors and families who have lost a loved one will hold posters of the faces of Histiocytosis! This will be the end of our NYC trek, but LLF and others will continue awareness efforts outside of Good Morning America in July 23. 

It is truly amazing how just a few years ago Michelle Schultz and two others started out on this journey and now dozens will flock the streets of New York wearing blue with pride; to support, to educate, to FIGHT BACK!

To learn more about Team Eric's fundraiser or Join Team Eric visit:

Liam's Lighthouse Foundation 5k to Fight Histio Fundraising Page