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! 

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.

Cold? Flu? Still's Disease Flare?

If you are out of the loop see this post first: Angels and Prayer Warriors

Tuesday night we only got about 2 hours of sleep total the entire night, so needless to say yesterday was exhausting! We spent the entire day at the ER as recommended by Eric's Rheumatologist due to the fact that meciations like Humira, methotrexate, and Humira can allow for Eric's body to become ill at a much faster rate. Fears of Sinusitus or even meningitis were on the table of possibities. Early labs taken at the family doctor trended away from an HLH Relapse

We had full labs, 2 X-rays and a CT scan on his head.

They showed:
• white cells were trending down, but are still above normal range.
• lung X-ray is clear
• CT scan was clear

Eric trying to rest off this pain gave me the dead fish face and stuck out his tongue for laughs...

That being said it has been proven to be a less intense sinus infection or a Still's flare up, possibly both. We were discharged since its safer to be home that the hospital and no imminent danger showed.

This morning we went to the Rheumatologist to go over everything and map out a plan. For the time being we stopped prednisone and replaced it with Medrol which is another similar type steriod which sometimes works better for patients than the prednisone. Also started a stronger antibiotic to fight infection. Hopefully we'll see a difference in a few days to a week and if so we can monitor and begin to taper the steriods again to a better level.

 Sorry for the delay - I didn't get much to eat and was super tired so when we got home last night..I ate and fell asleep on the couch and my phone wasn't charged all night.

- Amanda

Calling All Angels

Just like the song by Train, I'm Calling all Angels. It's been a long week and a half for us. Excited with anticipation of dropping prednisone levels again, Eric got his wish. We went down to 5mg! That's pretty close to what your body naturally produces so were almost ready to see if he can begin to start making it on his own and get off prednisone all together.

Just a few days after lowering the prednisone Eric began having severe headaches/migraine and became a little more tired and exhausted easier than usual. So we drank healthier drinks, bundled him up more and hope for the best.

The work week started and the headaches continued. They'd come on strong in the late afternoon and peak highest just about bedtime and would linger all night long off and on, waking Eric every 30-45 minutes. I haven't had nights like that in over 6 months. It was pretty rough.

Eric went to work Tuesday and by the afternoon he was feeling as crappy as the days before. So as we normally do we contacted all his doctors and decided to increase his prednisone by .5 and go back to the usual drop of .5mg every two weeks. Wednesday came and went and the headaches did too. So Thursday I called te family Scott and we were able to squeeze in an afternoon appointment.

Typically most people wouldn't fret over he aches and tiredness, I mean seriously, who can't use a little extra sleep every now and then?

While we were there we took some blood work again to check Eric's inflammatory markers and his cell counts as well as some vitamin levels. He also got a B12 shot which might be a regular regiment after we consult his 4 other main doctors. She put him on Bactrim and Flonase in hopes that this might just be the start of a 'simple' ear infection or sinus infection and nothing worse. The thing is- the simple anything to the average healthy person can become easily more complicated and detrimental to someone like Eric because of all the immunosuppressant drugs and life threatening diseases he has.

So as Eric finally drifts off for who knows how long, I'm calling all ANGELS and PRAYER WARRIORS to surround him with their love and pray for this to be nothing more than a simple cold that passes soon and that the Stills Dragan lay dormant. For more information on Still's Disease visit: www.StillsDisease.org

-Amanda

http://youtu.be/TaG9SDxwPBg

December Labs

The doctors say to take the 'numbers' with a grain of salt. If I'm feeling 'good' or better and not worse --that's most important. These were taken in December but with the holiday Amanda didn't get them updated on our Quest App which is really helpful for any of my fellow HLH family reading this. It's called Gazelle by quest diagnostics and all you do is type in the date you had blood drawn and the doctors name and info and you'll have them on your phone app in just a few days. Then you can view them or fax or email them to another doctor with just one tap!

So my ferritin dropped back down and so did the CRP. They look at ferritin for several things. Ferritin is a measure of iron in your blood and is followed for HLH diagnosis, but my red and white cell counts don't indicate any crazy HLH stuff going on so it's likely attributed to my Still's Disease. CRP is a non-specific inflammatory marker they look at. Last time it was 4 something so this is a step in the right direction.

Just moved down to 6.5mg of prednisone last Thursday an I'm feeling it a little but I'm hopeful it will subside just like it has before so I can move down to 6 next week!

HLH Rash?

No one could ever explain what this rash was but it came and went over 5 or 6 days. It seems as though a lot of people who get HLH get it at some point.